Articles
Royal Purple raffle supports Troy's Trail
Group connects, supports those with Hydrocephalus and Spina Bifida
Author of the article:
Jeffrey Ougler
Published Jun 21, 2023 • Last updated Jun 21, 2023 • < 1 minute read
Troy Chandler at Clergue Park for Troy's Trail in June 2019. BRIAN KELLY SunMedia
Article content
Proceeds from Royal Purple’s 50/50 cash raffle fundraiser draw #6 go to Troy’s Trail, a support group created to connect and help those in Sault Ste Marie with Hydrocephalus and Spina Bifida.
Sales end June 30 and the draw is July 1 at 207 Spruce St.
Blowing bubbles at Troy's Trail
Author of the article:
Brian Kelly
Published Jun 10, 2023 • Last updated Jun 11, 2023 • < 1 minute read
Ava De Rubeis, 10, blows bubbles during Troy's Trail at Clergue Park on Saturday, June 10, 2023 in Sault Ste. Marie, Ont. (BRIAN KELLY/THE SAULT STAR/POSTMEDIA NETWORK)
Article content
Ava De Rubeis, 10, blows bubbles before the start of the 12th annual Troy’s Trail Sault Ste. Marie Spirit Walk at Clergue Park on Saturday. Troy’s Trail helps Sault Ste. Marie residents affected by hydrocephalus and spina bifida. The event drew 75 participants and raised $2,200 for Hydrocephalus Canada.
Annual Troy’s Trail walk aids those with debilitating illness
Author of the article:
Sara McCleary
Published May 30, 2023 • 3 minute read
Some participants from a former walk.
Article content
Troy’s Trail’s annual walk, always scheduled to fall within Spina Bifida and Hydrocephalus Awareness Month, is set to take place on Saturday, June 10.
This is the organization’s 12th year hosting the walk to raise both awareness and funds for Hydrocephalus Canada, the national organization fighting hydrocephalus and spina bifida. Troy’s Trail was created and is managed by Troy and Annette Chandler after Troy’s own diagnosis of hydrocephalus in 1994 at the age of 28.
“We had no idea what it was and no local support group to turn to,” he told Sault This Week. “We were scared and felt alone. Since then we have made it our mission to create a supportive community here in Sault Ste. Marie for people with hydrocephalus and spina bifida.”
With Hydrocephalus Canada celebrating its 50th anniversary this year, Chandler is particularly excited to host the Spirit Walk to raise much-needed funds for the organization.
“They do so much to help those whose lives have been affected by Hydrocephalus and/or Spina Bifida,” he said.
In addition to the walk, Troy’s Trail is also supported by the Canadian Royal Purple, which has selected the organization as the beneficiary for its June online 50/50 raffle.
Troy’s Trail will also host an online auction via Facebook thanks to donations received from the community. “It is going very well,” said Chandler. “Thank you again to all the businesses and individuals that have given something to us. It is much appreciated.”
Some of the donations include a Bluetooth speaker from Best Buy, a one-month family membership donated by the YMCA, underarm laser sessions from The Ten Spot, and several other items from local individuals. The auction can be found on Facebook by searching “Troy’s Trail SSM Online Auction.”
While much of the focus is on funds and awareness, the walk is also an opportunity for those with the conditions to come together for connection.
“Troy’s Trail is a support team for Hydrocephalus and Spina Bifida that is available anytime all year, but this once a year event allows us to spread the word about the conditions and let people know that they are not alone,” said Chandler. “So for this one day, we can gather physically and talk and share and have a good time — to celebrate us, so you don’t feel different or isolated. We are in this together!”
Hydrocephalus and spina bifida are complex conditions that are not well-understood by those who don’t have them. Hydrocephalus is a build-up of cerebrospinal fluid in the brain that causes increased pressure in the skull. It can develop in any one at any age. Spina bifida is a neural tube defect that develops in the first four weeks of pregnancy, permanently affecting the development of the spinal cord.
The two conditions are closely related and create similar difficulties, including learning disabilities, memory loss, pressure sensitivity, visual impairment, seizures, hormonal imbalance, and poor motor skills. Families often struggle with physical and social barriers, medical complications, and financial burdens. The roller coaster ride a diagnosis takes a person on is where Troy’s Trail got its name.
“We tried to come up with a unique catchy name that told my story,” said Chandler. “So Troy’s Trail – trail for walking and taking the journey with the ups and downs. Trails are sometimes bumpy and rocky, and sometimes they can be smooth.”
He added, if he could teach the public only one thing about hydrocephalus, it would be just how complex and unpredictable the condition is.
“It can strike at any age, from newborns right through to the elderly, and with varying conditions for everyone. It’s lifelong and incurable, and everyone deals with it in their own way, the best they can. We may present as looking or acting normal sometimes, but those scars, and scars upon scars, can tell a different story. They have affected us beyond words. So please love us, and be patient with us, because we’re a little different.”
Registration for the Troy’s Trail Spirit Walk will start at 11 a.m. on Saturday, June 10, with the walk to start at 11:30 a.m. Those who would like to make a donation can do so online via CanadaHelps by searching Troy’s Trail, or by e-transfer to hydro.troy@gmail.com. Those with questions can contact Troy and Annette at hydro.troy@gmail.com or 705-946-453
Troy and Annette Chandler, local representatives on behalf of Hydrocephalus Canada, created the first Troy’s Trail Spirit Walk in 2012.
It was designed to be able to help others gain a deeper understanding of those affected by hydrocephalus and spina bifida who are living with the daily challenges brought on by these serious disabling and life-long neurological conditions.
Sault Ste. Marie is one of several communities across Canada that participates in the annual Spirit Walk to create a supportive community through research, awareness, care and advocacy.
This year the Chandlers are excited to be back in person organizing the annual awareness and fundraising campaign ahead of the walk, which is slated for this Saturday.
Over the past 10 years, the local community has generously supported Troy’s Trail.
To date Troy’s Trail has successfully raised over $25,000 for Hydrocephalus Canada, which is a a registered charitable organization with a 49 year history responsible for delivering programs and services that empower and improve the quality of life of children, youth, and adults impacted by hydrocephalus and spina bifida to experience the best life possible.
Troy’s Trail is striving to make a difference one step at a time. Together, we can continue to increase awareness of Hydrocephalus and Spina Bifida in Sault Ste. Marie.
TROY’S TRAIL DETAILS
Saturday June 11.
Registration: 11:00 a.m.
Walk Starts: 11:30 a.m.
619 Bay St. Active Living Centre (park off Foster Dr. or Clergue Park)
Friends and family can pre-register and donate anytime between now and up to the day of the event.
Drop Off for Donations: 382 North Street
E-TRANSFERS: chan_clan@shaw.ca
Or contact: Troy & Annette Chandler 705-946-4532 or 705-989-4349
Pledge forms also available.
A small group of Troy's Trail supporters gathered for last year's mostly virtual event. SUPPLIED jpg, SH
Troy’s Trail makes virtual optional this year
In-person fundraiser for hydrocephalus and spina bifida takes place this Saturday behind the Seniors’ Centre on Bay Street
Author of the article:
Publishing date:
Jun 07, 2022 • June 7, 2022 • 2 minute read • Join the conversation
Troy’s Trail looks forward to a return to a full in-person event for its 11th annual Spirit Walk on June 11 at 11 a.m.
The event is hosted by Troy and Annette Chandler, creators of Troy’s Trails, to raise awareness of hydrocephalus and spina bifida, as well as funds for Hydrocephalus Canada.
This year’s in-person walk comes after two years of virtual events due to COVID restrictions.
“We are really looking forward to reconnecting with our Troy’s Trail members, and as always hoping to welcome new people,” Troy Chandler, event organizer, told Sault This Week.
Although they are making a full return to in-person, they are also offering a virtual option for those out of town or who can’t make it the day of the event, he added.
Chandler said they saw a drop in participation during the virtual years.
“From what we’ve heard, people are looking forward to an in-person event this year. Doing it virtually just wasn’t the same, and isn’t for everyone.”
Walkers will gather that morning at the back of the Bay Street Active Living Centre before setting out to walk through Clergue Park.
Due to the changes brought on by the pandemic over the last couple years, Chandler does not know how many people might take part this year.
“Unfortunately we really have no idea how many people will show up,” he said. “At the height of the walk we were getting over 100 people, but now we do not know. Each year we hope to reach and meet someone new, so we are hoping for a nice day and a good turnout, but no matter how many people come out we are still excited to have our in-person walk this year.”
In addition to the walk, Troy’s Trail also hosts an online auction leading up to the walk to help build the excitement and get the word out. The auction, hosted on the Troy’s Trail Facebook page, includes a variety of items, such as gift cards for various local businesses.
To date, Troy’s Trail has raised almost $26,000 for Hydrocephalus Canada. The link for online donations can be found on the Troy’s Trail Facebook page, or donors can send an e-transfer to chan_clan@shaw.ca.
“Our community has always been and continues to be very supportive,” said Chandler. We are very thankful and appreciative for all the donations received from our local businesses throughout the last 10 years.”
Troy’s Trail and the walk came out of Chandler’s own diagnosis of hydrocephalus in 1994 at the age of 28.
“We had no idea what it was and no local support group to turn to,” said Chandler. “We were scared and felt alone. Since then, we have made it our mission to create a supportive community here in Sault Ste. Marie for people with hydrocephalus and spina bifida.”
Troy’s Trail returns to real thing
Fundraiser and vehicle for generating awareness about hydrocephalus back to in-person, set for Saturday
Author of the article:
Publishing date:
Jun 06, 2022 • June 7, 2022 • 3 minute read • Join the conversation
Troy Chandler and Troy’s Trail supporter Jessy LaFord,12, are excited about this year’s in-person walk.
Troy’s Trail is on the path of returning to its roots.
Forced by pandemic safety protocol to do virtual walks the last two years, participants in the annual Sault Ste. Marie fundraiser and vehicle for generating awareness about hydrocephalus will once again stroll in person.
Event co-founder Troy Chandler couldn’t be happier.
“It’s just not the same doing it virtually,” Chandler told the Sault Star this week. “We did get the financial participation, which was great. But the face stuff was missing. We miss the connecting with the group.”
Pine no more. The 11th annual Troy’s Trail 11th Annual Walk for Hydrocephalus and Spina Bifida is set for Saturday, rain or shine. Registration is at 11 a.m. and the walk begins at 11:30 a.m.
The event returns to the Clergue Park boardwalk, consisting of a 15-minute loop but, this time, from the Bay Street Active Living Centre, located at 619 Bay St., to the Civic Centre. Both the Art Gallery of Algoma and Sault Ste. Marie Public Library were booked Saturday.
“So, in case of bad weather …” Chandler said. “It’s a nice place to set up, so we might just set up there and have the walk right in Clergue Park.” Park off Foster Drive or at Clergue Park.
Despite COVID-19’s disruption, support has remained solid.
Chandler and his wife, Annette, are well aware of the power of positive re-enforcement and wish there would have been more of it locally in 1994 when, at 28, he was diagnosed with hydrocephalus, a disorder in which fluid buildup causes pressure inside the head and can injure the brain and cause it damage.
At the time of Chandler’s diagnosis, he was a young, married father of a daughter, 2, and he and Annette were expecting. The Sault Ste. Marie couple knew nothing about the condition. Although frightened about their future, the pair was proactive, reaching out to the Spina Bifida & Hydrocephalus Association of Ontario in Toronto. They became members and, since 2010, have served as the association’s Sault Ste. Marie contacts and seeds for the walk were sown.
Chandler said he’s heard from Troy’s Trail faithful equally enthusiastic about the event being held in-person. But he said he understands there may still be those who are “reluctant” to gather physically “with everything going on.”
“We went to a stag and doe last weekend and it was our first real outing with people,” Chandler said. “It felt weird, but it shouldn’t feel weird. There might still be people on the fence about it, but from what we’re hearing, (the walk will be) a nice way to just put it behind and get together again.”
Chandler assures there will be plenty of hand sanitizer on site.
“If you feel comfortable (masking up), you definitely won’t be shunned, that’s for sure,” he added. “If that’s the way you feel safe about it, then by all means.”
June is Hydrocephalus and Spina Bifida (H&SB) Awareness month in Canada. It is estimated that 120,000 Canadians are living with hydrocephalus; 85 per cent of those impacted by hydrocephalus also have spina bifida. Hydrocephalus Canada bridges research, awareness and innovation, with advocacy, education and support to empower people impacted by hydrocephalus and spina bifida to “experience their best life.”
Troy’s Trail has not only been a sound means of raising research funds, but serves as a solid way to connect with others, including those who do not necessarily have hydrocephalus, but whose disorders are similar.
Not everyone who has the disorder gets seizures, but because Chandler, 55, does, he must take medication, which, in his case, brought on osteoporosis. His work as a Shoppers Drug Mart merchandiser had to be scaled back to part-time following the diagnosis. And, like so many, COVID-19 put Chandler on the employment sidelines for a time; he returned to Shoppers in spring 2021.
“Everything’s good,” Chandler said. “It’s nice to put that other stuff behind us and move on to our regular walk again.”
For further information, call 705-946-4532.
E-transfer donations: chan_clan@shaw.ca
Online donations: https://p2p-can.keela.co/troys-trail/donate
jougler@postmedia.com
SOOTODAY
Troy’s Trail likely to go virtual again this year
Troy’s Trail supports individuals and their families living with hydrocephalus and spina bifida
SooToday Staff
May 14, 2021 5:33 PM
File photo from 2019 walk. James Hopkin/SooToday
NEWS RELEASE
TROY'S TRAIL
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Hydrocephalus (water on the brain) is a chronic condition that impacts the brain. It can affect anyone from unborn babies to older adults, and the condition can lead to challenges with movement, memory and learning as well as headaches, seizure and incontinence. Left untreated, hydrocephalus can be fatal.
Troy and Annette Chandler are committed to reaching out and making a positive difference in the lives of individuals and their families whose lives have been impacted with the daily challenges brought on by these serious disabling conditions.
Troy’s Trail supports individuals and their families living with hydrocephalus and spina bifida. The annual walk, created in 2012, brings people together in Sault Ste. Marie to celebrate and honour loved ones who are living with, or who have passed away from these neurological conditions.
June is the month to highlight the importance of the cause through awareness and fundraising activities.
It is through public awareness, media relations, and social media that promotes a community that is supportive and appreciates the challenges faced by people living with these lifelong neurological conditions.
Community support is welcomed to help raise much needed funds and awareness. Hydrocephalus Canada relies on fundraising efforts and generous donors to continue essential programs, services, and research that help improve the quality of life for people living with these conditions and their families in our communities.
In light of the evolving situation with COVID-19 and the guidelines set out by the provincial government, Troy's Trail will likely be going virtual again this year. While we may not physically be able to get together for this year’s celebration, we can still come together virtually to make this year a memorable one!
Troy and Annette would like to take this opportunity to thank the community for their continued support over the years.
You can still make a difference, to help fund event costs, and direct more money toward providing community awareness, education, and resources.
If you would like to contribute toward this year’s fundraising goal, please click on the link below. Any donation amount will be greatly appreciated! Your support will go a long way to help make Troy’s Trail 10th Annual event a success.
Donation can be made here. E-transfers accepted here.
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SAULT STAR
Troy’s Trail strides along again virtually
Author of the article:
Publishing date:
Jun 15, 2021 • June 15, 2021 • 3 minute read • Join the conversation
Troy and Annette Chandler (centre) gather with supporters during a pre-pandemic Troy’s Trail fundraiser. Supplied
Virtual Troy’s Trail fundraisers aren’t exactly walks in the park
Certainly not for organizers, supporters and participants, who proudly wear their hearts on their sleeves.
“We are a very … I don’t know if the word is huggy. But we’re just a very touchy kind of group,” says Troy Chandler, co-founder of the annual Sault Ste. Marie fundraiser and vehicle for generating awareness about hydrocephalus.
“You lose that with a virtual walk. But at least we can stay together virtually,” he told the Sault Star in an interview.
Indeed. The 10th annual walk, slated for June 19, will mark the second time the event has had to be carried out strictly online due to the pandemic. The event is generally held at the Clergue Park boardwalk, consisting of a 15-minute loop from the Art Gallery of Algoma to the Civic Centre.
Chandler says he hopes any wrinkles were ironed out in 2020 and Saturday’s event will sing.
“For doing something for the first time, I think it turned out pretty good,” Chandler said of last year’s virtual effort.
Support, Chandler says, has remained solid.
Chandler and his wife, Annette, are well aware of the power of positive reenforcement and wish there would have been more of it locally in 1994 when, at 28, he was diagnosed with hydrocephalus, a disorder in which fluid buildup causes pressure inside the head and can injure the brain and cause it damage.
At the time of Chandler’s diagnosis, he was a young, married father of a daughter, 2, and he and Annette were expecting. The Sault Ste. Marie couple knew nothing about the condition. Although frightened about their future, the pair was proactive, reaching out to the Spina Bifida & Hydrocephalus Association of Ontario in Toronto. They became members and, since 2010, have served as the association’s Sault Ste. Marie contacts
Since launching Troy’s Trail Walk for Hydrocephalus and Spina Bifida, the couple has come into contact with dozens of people, and their families, confronting many of the same challenges they did early on. An informal support network is available all year, mostly via social media.
The Chandlers have also met many who do not necessarily have hydrocephalus, but whose disorders are similar.
Not everyone who has the disorder gets seizures, but because Chandler does, he must take medication, which, in his case, brought on osteoporosis. His work as a Shoppers Drug Mart merchandiser had to be scaled back to part-time following the diagnosis. And like so many, COVID-19 put Chandler on the employment sidelines for a time; he returned to Shoppers last week.
“It’s been OK. You have to make the most of it,” he said.
Troy’s Trail merchandise, such as coffee mugs, is on sale this year to celebrate the anniversary and Annette launched an online auction in early June — Hydrocephalus & Spina Bifida Awareness Month — primarily featuring items donated by area businesses.
“We’ve been blessed,” Chandler said. “The donations we get are incredible.”
To date, Troy’s Trail has raised more than $22,500 for Hydrocephalus Canada.
“Just to create a buzz,” Chandler said of this year’s heightened online fundraising and public relations. “Just something different to dip our toe inti the water and try something different.”
Troy’s Trail Details
— Troy’s Trail Page
https://www.facebook.com/TroysTrail10
— Troy’s Trail Group
https://www.facebook.com/groups/335507903188827
http://fnd.us/61ny16?ref=ab_a9zzGa_sh_bAD0R9
— Cheques made out to Hydrocephalus Canada
— Cash or e-transfer
hydro.troy@hotmail.com
— Contact Troy and Annette at 705-946-4532
jougler@postmedia.com
On Twitter: @JeffreyOugler
SAULT THIS WEEK
Troy’s Trail marks special year
‘Not exactly what we envisioned…’ annual walk to raise funds for hydrocephalus is virtual again in 2021
Author of the article:
Publishing date:
Jun 07, 2021 • June 7, 2021 • 3 minute read • Join the conversation
Troy and Annette Chandler are doing the best the lockdown allows and for their first 10 years say, 'Thank you Sault Ste. Marie!'
The annual Troy’s Trail Walk will be a virtual event again this year, on its 10th anniversary.
The walk is hosted by Troy’s Trail, an organization founded by Troy and Annette Chandler to raise funds for Hydrocephalus Canada, and awareness of hydrocephalus and spina bifida. The walk had to run virtually last year due to pandemic restrictions and it will be the same for 2021.
“Not exactly what we envisioned considering we are celebrating our 10th anniversary, but with government restrictions in place, we are doing everything we can to make the most of it,” Troy Chandler told Sault This Week.
The move to virtual does allow for more flexibility for participants.
“Do whatever you want, from wherever you are, near or far,” said Chandler. “Wear your colourful t-shirts, or make a sign highlighting a loved one, or who you are walking and showing support for.”
Chandler hopes those who complete the walk will take photos and videos showing their support for Troy’s Trail, sharing them on social media and posting them on the event’s Facebook page between now and June 19.
The walk had been regularly growing in numbers, starting with about 20 participants in 2012 and peaking at about 150 taking part in the 2019 walk. With the move to virtual last year, the number of participants dropped down to about 50, though it was still very successful and all had fun, Chandler said.
“We really don’t know who or how many people will participate this year,” added Chandler. “But we hope that with it being virtual it will open up the opportunity for more people out of town to take part. So I guess we will just have to wait and see. What we do know is that whoever does participate, and whatever we do raise, is very much appreciated.”
The Chandlers added an online auction to raise additional funds this year, recognizing the event’s special anniversary.
“We were able to receive some generous local business donations this year, and decided we would run a weekly auction beginning in June up to the time of the walk, with all proceeds going to Hydrocephalus Canada,” said Chandler.
So far, auction prizes have included a $100 Best Buy gift card and a $100 Station Mall gift card. The auctions are taking place in a Facebook group called “Troy’s Trail Auction.”
Troy’s Trail has raised more than $22,000 to date, for Hydrocephalus Canada.
“We feel very humbled as to what Troy’s Trail has become,” said Chandler. “It has far exceeded our expectations and it is making a difference. We have not only created a support group, we have made friendships to last a lifetime.”
When Troy and Annette started Troy’s Trail, they envisioned reaching out to others with hydrocephalus and spina bifida for support and to share their stories, but also those going through it for the first time so that they didn’t have to go through it alone, Chandler said.
“When I was diagnosed at 28, we had no clue what was going on and there wasn’t a local support group available for us to turn to,” he said.
They turned to Hydrocephalus Canada and with the support of that organization, they launched Troy’s Trail.
“On behalf of Troy’s Trail, Annette and I would like to extend our appreciation to our local businesses who helped make Troy’s Trail a success over the last 10 years,” said Chandler. “We couldn’t have done any of this without the support of our community. Thank you, Sault Ste. Marie!”
SAULT ONLINE
Troy’s Trail Celebrates 10th Annual Walk Event
File Photo: June is Hydrocephalus & Spina Bifida Awareness Month
By Content Team -May 16, 2021 @ 10:00 am
These two complex conditions are often closely related, with 85 per cent of babies born with spina bifida also having hydrocephalus.
Hydrocephalus is a build-up of cerebrospinal fluid in the brain, causing increased pressure inside the skull which can be caused by a variety of medical problems. Anyone can develop Hydrocephalus and may occur at any time during a person’s life. Hydrocephalus can be a serious condition, and must be treated. If it is not treated it can cause permanent brain damage or in severe cases, death. There is NO cure for hydrocephalus!
Spina bifida is a neural tube birth defect (NTD) which occurs within the first four weeks of pregnancy and affects the development of the spinal cord. This results in varying degrees of paralysis of the lower limbs and permanent damage to the spinal cord and nervous system. And nerve damage is permanent. There is no cure!
Physical and social barriers, medical complications, learning disabilities and financial burdens are some of the challenges that individuals with hydrocephalus and spina bifida, and their families must face each and every day.
Most people with hydrocephalus or spina bifida will have some difficulty in one or more of these areas: learning disabilities; memory loss; motor skills; pressure sensitivity; visual impairment; seizures; constipation; incontinence; hormonal imbalance.
Treatment for the variety of effects of hydrocephalus and spina bifida can also include medication, physiotherapy and the use of assistive devices.
In 2012 Sault Ste. Marie’s first TROY’S TRAIL Spirit Walk was organized and created to connect with others locally who are affected by these two conditions.
We are committed to making a positive difference in our community by spreading awareness, and offering support to others living with hydrocephalus and spina bifida.
Troy’s Trail sets the stage for mutual support and encouragement, information exchange and positive feedback. This atmosphere helps to provide personal growth, closer inter-personal relationships and increased self-esteem.
Therefore we feel it essential that family, extended family, friends, health & education professionals, including recreation and sport activities, and other community services are aware and informed of these conditions.
THE ANNUAL TROY’S TRAIL IS CELEBRATING 10 YEARS!
June is our month to highlight the importance of our cause through awareness and fundraising activities.
It is through public awareness, media relations, and social media that we promote a community that is supportive and appreciates the challenges faced by people living with these lifelong neurological conditions.
While we may not physically come together for this year’s celebration, we can still come together virtually to make this year a memorable one!
To date Troy’s Trail has raised over $22,500 for Hydrocephalus Canada.
We are making a difference! By working together we support each other to help improve the quality of life for all individuals.
If you would like to support Troy’s Trail and make a donation, please click on the link below
http://fnd.us/61ny16?ref=ab_a9zzGa_sh_0scvyC2Zjun0scvyC2Zjun
We do accept E-Transfers: ann_chan@shaw.ca
Any donation amount is greatly appreciated!
For more information please contact Troy or Annette Chandler 705-946-4532 or leave a message.
Annual Troy's Trail charity walk becomes virtual FUN-raiser
Online event happens June 13
May 19, 2020 10:30 AM By: SooToday Staff
NEWS RELEASE
TROY'S TRAIL
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COVID-19 has made it challenging to host our in-person our 9th annual Troy's Trail Walk this June. While we understand the importance of social distancing, we also recognize that now more than ever we need to be there for each other and stay connected.
We have decided on Troy's Trail FUN-raiser, from wherever you are.
So join us for our virtual event on June 13, 2020 by visiting our Facebook page at Troy's Trail.
We are encouraging individuals and families to take part and wear your t-shirts, make signs, do whatever you want to do and post your pictures or videos to Troy's Trail!
And if anyone wishes to, we will still gratefully accept donations but only if you are able. Donate here.
We realize this is a trying time for all of us, and many are struggling financially. But we can still celebrate Troy’s Trail “your” way! While we can’t physically walk together, we are taking virtual steps to stay connected.
There is no cure for Hydrocephalus or Spina Bifida, but together we can make a difference. Let's fun-raise for Hydrocephalus Canada.
Troy’s Trail Walk a ‘FUN-raiser’ this year
File photo of 2019 Troy's Trail Walk. James Hopkin/SooToday
Published on: May 25, 2020 | Last Updated: May 25, 2020 10:58 PM EDT
While many events have had to be cancelled over the last several weeks due to the ongoing COVID-19 pandemic, some have moved to an online format. The ninth annual Troy’s Trail Walk is one event that has gone virtual for 2020.
Troy’s Trail founders Troy and Annette Chandler took some time to decide what to do about the event intended to raise awareness of hydrocephalus and spina bifida.
“Our first reaction was to cancel the event altogether this year, just like so many other events have sadly had to understandably do,” Troy Chandler told Sault This Week.
“But after some pondering, we have decided that we are a small enough group that we could probably pull something off. We still want to reach out to try and help others who are maybe alone and need our support. It’s so important to us.”
For the last eight years, Troy’s Trail has held a walk in June to raise awareness and some funds for Hydrocephalus Canada. Since that is not possible this year, the couple decided to host an online event on June 13.
“While we can’t physically walk together, we are taking virtual steps to stay connected, increase awareness, and possibly raise much-needed funds for Hydrocephalus Canada,” said Chandler.
“So to celebrate Troy’s Trail 2020 FUN-raiser we are asking the community to post pictures or videos from wherever they are showing support for Troy’s Trail or recognizing a loved one affected by hydrocephalus or spina bifida. And to simply have fun doing it!”
Chandler hopes people will get creative in posting to the Troy’s Trail Facebook Group, he said. Participants can also email their contribution to troystrailssm2012@gmail.com and they will add it to the page.
Donations are also welcome, but the couple understands this is a trying time with many struggling financially, so the focus this year is really on awareness and bringing together the local hydrocephalus and spina bifida community.
“While we understand the importance of social distancing, we also recognize that now more than ever we need to be there for each other,” said Chandler. “This one day brings us all together and keeps us connected. It gives us all a sense of belonging. We all look forward to it.”
The annual Troy’s Trails Walk typically sees anywhere from 70 to 100 participants, but Chandler said he has “no idea” how many to expect this year.
“But we just knew we had to at least try and do something, even if it has to be through social media,” Chandler added. “To go two years without seeing our Sault Ste. Marie and beyond hydrocephalus and spina bifida family just doesn’t sit right.”
The Chandlers began Troy’s Trail after Troy was diagnosed with hydrocephalus in 1994 at the age of 28.
“We had no idea what it was and no local support group to turn to,” said Chandler. “We were scared and felt alone. Since then we have made it our mission to create a supportive community here in Sault Ste. Marie for people with hydrocephalus and spina bifida.”
They began hosting the annual walk as a way to bring together local people who share similar experiences and offer “mutual support, encouragement, comfort, information, and positive feedback.” The event is held in June to align with Spina Bifida and Hydrocephalus Awareness Month.
Since 2012, the annual Troy’s Trail Walk has raised more than $19,000 to support Hydrocephalus Canada and its programs and services. The organization has also brought together almost 40 local people living with hydrocephalus, spina bifida, or both.
“I believe that hydrocephalus was given to me for a reason, and we felt that it was our ‘calling’ to make the most of it,” said Chandler. “There is no cure for hydrocephalus or spina bifida, but together we can raise awareness and make a difference.”
Troy's Trail goes down different path
Jasmin Gaudette,Jessy Laford, Mayelynn Mergaert, and Kayden Sullivan SUBMITTED
Troy’s Trail is headed in a different direction this year.
With the COVID-19 pandemic putting a hold on gatherings of more than five people, the annual fundraiser for Hydrocephalus Canada will still run, but is leaving just what participants will do up to them.
“It’s a fundraiser to do whatever you want from wherever you are,” organizer Troy Chandler told The Sault Star. “We don’t really know how it’s going to go. You don’t know. You’re casting your line and hoping it turns out OK.”
Rather than gathering at Clergue Park during Hydrocephalus and Spina Bifida Month, Chandler and his wife, Annette, are encouraging supporters to send photos of their walk activities on June 13 between 9 a.m. and 6 p.m. to the event’s Facebook page. No pre-registration is needed. Signs could be made to show support for someone with hydrocephalus or spina bifida. A walk around the neighbourhood is another option.
The Chandlers initially considered not having a walk this year because of the pandemic. Further discussion nixed that idea after considering “all the hardships that some of our people in our group have gone through this year,” said Chandler. “We can’t go a year without staying connected somehow. We’re hoping this is something that’s going to keep us together.”
The couple also wanted to keep nurturing the event’s public profile for anyone who might not know their group exists and wants to join.
“We don’t want anybody to fall through the cracks that could really use the support,” said Chandler. “We want to keep it out there.”
He and Annette are aware of about 40 Sault Ste. Marie residents who have spina bifida or hydrocephalus.
Chandler plans to post a video to the event’s Facebook page in early June, followed by another address on June 13.
Troy’s Trail has raised slightly more than $19,000 since its launch, with the 2019 walk bringing in $3,635.
Raising cash is a secondary concern for the ninth annual event because of the economic impact the health crisis has had with business closures and residents urged by government and public health officials to stay home.
“It’s such a hard time for everybody right now and people are really struggling with this,” said Chandler. “We’re not really pushing money.”
Not meeting up at Clergue Park later this month will be tough, too.
“We’re such a hugging, shaking hands, face-to-face kind of group,” said Chandler. “It’s tearing us apart to not be together.”
The Chandlers still have to decide what they’ll do come June 13.
The couple is currently “juggling other things.
“We don’t really know yet,” said Chandler.
HYDROCEPHALUS CANADA
NEWS LOCAL
‘We’re doing it with both feet in’
Troy’s Trail organizers make it their ‘mission’ to assist those with spina bifida, hydrocephalus and more
Jeffrey Ougler
Published on: May 10, 2019 | Last Updated: May 10, 2019 5:04 PM EDT
Troy Chandler (wearing white ball cap at right) joins other Troy's Trail seventh annual Walk for Hydrocephalus and Spina Bifida participants in 2018 at Clergue Park.
SAULT STAR
Troy Chandler understands rubbing shoulders at public events is not necessarily everyone’s cup of tea.
But the co-founder of an annual Sault Ste. Marie fundraiser and vehicle for generating awareness about hydrocephalus says such wonderful support can be secured by showing up and shaking a few hands.
“Everybody needs help sometimes,” said Chandler in an interview with The Sault Star. “We can’t do stuff alone or just with a partner. Everybody needs support and it’s nice to know there is someone there if something happens, they can just pick up the phone and call them.”
Chandler and his wife, Annette, know first-hand the power of positive reenforcement — and wish there would have been more of it locally in 1994 when, at 28, he was diagnosed with hydrocephalus, a disorder in which fluid buildup causes pressure inside the head and can injure the brain and cause it damage. Since launching Troy’s Trail Walk for Hydrocephalus and Spina Bifida eight years ago, the couple has come into contact with dozens of people, and their families, confronting many of the same challenges they did early on. An informal support network is available all year, mostly via social media. But the walk physically brings people together, keeps them connected and offers a “sense of belonging,” Chandler said.
“Come on out to the walk and give it a try,” he added. “Just come out and see what it’s all about.”
About 100 attended 2018’s event.
I don’t want to push people, either,” Chandler said. “They just need to have their own time.”
This year’s walk is June 1 at Clergue Park boardwalk. Registration is noon and the walk kicks off at about 12:30 p.m., consisting of a 15-minute loop from the Art Gallery of Algoma to the Civic Centre.
The event has raised more than $15,000 to support programs and services provided by Hydrocephalus Canada to thousands Canadians.
At the time of Chandler’s diagnosis, he was a young, married father of a daughter, 2, and he and Annette were expecting. The Sault Ste. Marie couple knew nothing about the condition. Although frightened about their future, the pair was proactive, reaching out to the Spina Bifida & Hydrocephalus Association of Ontario in Toronto. They became members and, since 2010, have served as the association’s Sault Ste. Marie contacts.
The Chandlers have also come into contact with individuals who do not necessarily have hydrocephalus, but whose disorders are similar. For example, one woman has chiari malformation, a condition in which brain tissue extends into the spinal canal. Another has diopathic intracranial hypertension, a condition characterized by increased pressure around the brain without a detectable cause.
“They’re looking for a group to belong to,” Chandler said. “It’s kind of branching out a little bit, too.”
These people are now linked via Facebook and have increased access to others with similar conditions. The Chandlers are also considering fall and winter events, not necessarily fundraisers, but mainly get-togethers.
“I can see it happening,” said Chandler, adding he and Annette have made it their “mission” to create a “supportive community” for people with spina bifida and hydrocephalus.
“It’s very rewarding … We call it our baby,” Chandler said. “We’re doing it with both feet in. We love it.”
To support Troy’s Trail, call the Chandlers at 705-946-4532 or email troystrailssm2012@gmail.com
jougler@postmedia.com
On Twitter: @JeffreyOugler
Published on: May 13, 2019 | Last Updated: May 13, 2019 11:51 PM EDT
Turnout sought for Spina Bifida and Hydrocephalus walk
Sault This Week
For the eighth year running, all are welcome to ring in Hydrocephalus and Spina Bifida Awareness Month by coming out to the Troy’s Trail Spirit Walk on Saturday, June 1.
Organized by Troy’s Trail founders Troy and Annette Chandler, the Spirit Walk will start at Clergue Park, with registration opening at noon and the walk to begin at 12:30 p.m. After a short speech, walkers will walk along the boardwalk to City Hall then turn back to Clergue Park.
Annette told Sault This Week the walk “is a place to come and meet with other people who share similar experiences, and bring them together for mutual support, encouragement, comfort, information, and positive feedback.”
Although the event typically sees anywhere from 70 to 100 people come out to walk, those are primarily family and friends of individuals living with hydrocephalus and/or spina bifida.
They’d like to see more members of the community, particularly those who haven’t participated in the past, come out this year to help share stories and offer support, Chandler said.
All funds raised through the walk go directly to Hydrocephalus Canada. But the walk is also about raising awareness of the conditions.
“It is through public awareness, media relations, and social media that we gain public support, strengthen community engagement, and increase investment in our cause,” said Chandler. “We are able to expand our resources, and offer more improved services that benefit families and others locally. By working together we support each other to help improve the quality of life for all individuals.”
Though the Spirit Walk started in 2012, its origins can be traced back to 1994 when Troy Chandler received his diagnosis of hydrocephalus at age 28.
“My wife and I made it our mission to create a supportive community here in Sault Ste. Marie for people with spina bifida and hydrocephalus,” said Troy. “We knew nothing about this condition or what it meant for our future as a young new married couple with a two-year-old and another one on the way. We didn’t know anyone who had it; there was no local support. We felt scared and alone.”
The couple did a lot of research in the years following Troy’s diagnosis, and in 2010 became the local contacts for Hydrocephalus Canada, formally known as the Spina Bifida & Hydrocephalus Association of Ontario (SB&H).
Now the couple is connected with more than 30 local individuals, along with their families, who live with one or both of the neurological conditions, offering year-round support whenever needed so that nobody needs to face the conditions alone.
“I believe that hydrocephalus was given to me for a reason, and we felt that it was our ‘calling’ to make the most of it,” said Chandler.
Annette pointed out that being very complex conditions, “unless you or someone you know has it, hydrocephalus and spina bifida are much unknown.”
Spina bifida is a neural tube birth defect that develops within the first four weeks of pregnancy, affecting the spinal cord’s development, and resulting in varying degrees of paralysis of the lower limbs and damage to the spinal cord and nervous system.
While spina bifida is a condition you are either born with or not, hydrocephalus can occur at any age or stage of life. It occurs when cerebrospinal fluid builds up in the brain and causes increased pressure inside the skull. If the condition goes untreated, it can cause permanent brain damage or even be deadly.
The conditions are closely related, as 85 per cent of babies born with spina bifida also have hydrocephalus.
Those living with either or both condition face a number of physical and social barriers, medical complications, learning disabilities, and financial burdens. These often impact family members as well.
That’s why the Chandlers wanted to help make life easier for those living with hydrocephalus and spina bifida, and so organized Troy’s Trail.
They wanted to be able to tell his story of life with hydrocephalus through the name of their organization, Troy said.
“Trail for walking and taking the journey with the ups and downs,” he said. “Trails are sometimes bumpy and rocky, and sometimes they can be smooth.”
Over the years, Troy’s Trail Spirit Walks have raised more than $15,000 in support of Hydrocephalus Canada and the thousands of people across the country living with the conditions.
FOR THE LOVE OF JESSY
Jessy Needs Your Help
Local resident Jessy James is a very special little girl, there may be only one other person in the world like her.
Unfortunately, what makes Jessy special is a rare neurological disorder, she was diagnosed with hydrocephalus three years ago when she was six, but that’s not all, the doctors also found 3 cysts in her brain, one of which is on the base of her skull.
These cysts cause excruciating headaches and Jessy must travel back and forth to Ottawa to CHEO for treatment. Several other cysts where also found inside the third ventricle and she needs surgery to remove the cysts which are growing.
Removing the cysts however will not be an easy operation due to their proximity to a main artery.
On Wednesday October 17th, Jessy underwent her first surgery, which she came through wonderfully. Dr. McCauley, Jessy’s surgeon, is determined that Jessy stay in Ottawa until he finds all the answers.
Jessy’s family is asking everyone for their prayers and positive thoughts during this trying time.
Troy’s Trail, a local support for people with Hydrocephalus & Spina Bifida, is asking anyone who would like to help the family with the expenses for travel, accommodations, or food can contact them at 705-946-4532 or send an email chan_clan@shaw.ca a PayPal donation can be made here.
Troy Chandler, of Troy’s Trail and Jessy’s aunt, Diana James joined Riley Smith in the ONNTV studios to discuss Jessy’s condition.
Watch the video.
To follow Jessy’s Journey Click here.
To follow Troy’s Trail Click here and here
7TH ANNUAL WALK 2018
The Chandlers find a sense of family through annual walk
for spina bifida, hydrocephalus
People living with spina bifida and hydrocephalus converged at Clergue Park Saturday afternoon for the annual ‘Troy’s Trail’ fundraising walk.
Troy Chandler and his wife, Annette, started the walk seven years ago as a way of creating a network of people who have had similar experiences with their conditions.
“This is our get together where everybody with a condition can come out, guards are down,” Chandler said.
Chandler was diagnosed with hydrocephalus - a condition where fluid builds up in the brain - when he was 28 years old.
“When I was diagnosed with hydrocephalus and I went to Sudbury, and found out that we had to have this shunt surgery for hydrocephalus to clear fluid from my head,” Chandler said.
“We came back to the Sault all alone, not knowing anything. I couldn’t even pronounce the word.”
The Chandlers then began reaching out, hoping to find others living with the condition locally.
“Let’s not let anybody else go through this alone, let’s put our thing out there,” Chandler said.
“Maybe other people will come and want to share their story too and similar experiences,” added Annette. “It just keeps growing.”
Seven years after the first Troy’s Trail walk, Chandler says that the idea seems to be working.
“I got a call last Christmas from a guy in Toronto, just got admitted to Toronto hospital,” Chandler said. “Laying in bed, waiting to go in for his shunt surgery, wanted to talk to me.”
Chandler says that there are roughly 30 people in town who live with either hydrocephalus or spina bifida - or in some cases, both.
“This is why we started this, and I think I got this for a reason, for a better reason, and we’re trying to use it to our fullest potential and try to help as many people as we can,” Chandler said.
“We’re like a family now, we consider everybody family,” added Annette. “They’re not friends, they’re family, and we look forward to this day.”
“Everybody does.”
Pledges from the Troy’s Trail event will go to Hydrocephalus Canada
Troy takes on Mother Nature and wins!
By Craig Huckerby - June 5, 2016
For the first time in five years, Troy and Annette Chandler were forced to make last minute plans for their annual “Troy’s Trail” – a walk to bring highlight and raise money supporting awareness of the Spina Bifida & Hydrocephalus Association of Ontario. The weather seemed threatening with showers and clouds moving in for the weekend.
The couple made plans to hold the registration and walk indoors at the near by Public Library on East Street instead of the beautiful boardwalk stroll at Clergue Park if Mother Nature decided to rain on their event.
But the Chandlers’ have faced bigger battles than a little rain.
Troy suffers from hydrocephalus. The term hydrocephalus is derived from the Greek words “hydro” meaning water and “cephalus” meaning head. As the name implies, it is a condition in which the primary characteristic is excessive accumulation of fluid in the brain.
The couple have spearheaded awareness of both Spina Bifida & Hydrocephalus in Sault Ste. Marie and beyond.
Chandler told the crowd gathered Saturday afternoon, that the Ontario headquarters of the association in Toronto is well aware of the success of Troy’s Trial. “They talk about us in Toronto , they notice how much attention we get in the media” Chandler said.
The event has grown by leaps and bounds by attendance alone including attracting good friend and former employee of Chandler’s, Mayor Christian Provenazano who spoke about Troy and his cause. The Mayor made the walk along with his wife and new born baby girl.
As the 1pm start time approached, cloudy conditions gave way to overcast and no big threat of rain and another successful Troy’s Trail can be written into the history books.
More of this year’s walk in the gallery!
By Jeffrey Ougler, Sault Star
Wednesday, May 11, 2016 5:00:11 EDT PM
Participation up for fundraiser and vehicle for generating awareness about hydrocephalus
Troy Chandler mixes with Troy's Trail participants during a previous fundraiser. Last year, more than $2,000 was generated for research and support of programs and essential services provided by the Spina Bifida and Hydrocephalus Association of Ontario.
SAULT STE. MARIE - It appears as more and more talk the talk, more and more walk the walk.
A dozen laced up five years ago for the the Troy's Trail debut; last year more than 75 took to Sault Ste. Marie's waterfront to walk in the fundraiser and vehicle for generating awareness about hydrocephalus. Growing interest, organizers say, is the product of many helping to get the word out.
"Starting with 12 people and going to what we have now … Would we have expected that? We just hoped that would have happened, and it has," Troy Chandler told The Sault Star in a recent interview. "It's a feel-good story."
Troy’s Trail fifth annual Walk for Hydrocephalus & Spina Bifida takes place June 4 and one of the event's key architects hopes last year's numbers can be beaten, both in terms of participation and dollars generated.
Troy, now in his late 40s, was just 28 when diagnosed with hydrocephalus, a disorder in which fluid buildup causes pressure inside the head, which can injure the brain and cause it damage. Not everyone who has the disorder gets seizures, but because Troy does, he must take medication, which, in his case, brought on osteoporosis. His work as a Shoppers Drug Mart merchandiser had to be scaled back to part-time following the diagnosis.
Troy and his wife, Annette, came up with the Troy's Trail concept to also network affected individuals. The fact that's happened is the root of much satisfaction.
"Still, throughout the year, even after the walk, you meet more people who are reaching to you," Chandler said. "It's cool. You can say it's growing because, every year, you're reaching out to more and more people."
Since Sault Ste. Marie does not have a hydrocephalus support group, the couple became members of the Spina Bifida & Hydrocephalus Association of Ontario (SB&H) and have been putting the word out via traditional methods and social media.
Last year, more than $2,000 was generated. All proceeds go toward research, support programs and essential services provided by the Spina Bifida and Hydrocephalus Association of Ontario.
Registration is at 12:30 p.m. — donations can be made then, as well — and the walk commences at 1 p.m. on the boardwalk in Clergue Park, by the Art Gallery of Algoma.
Like last year, this year's event received corporate donations in the form of gift certificates and other such things that will be distributed via raffles and give-aways. There will also be refreshments.
To donate, call 705-946-4532, e-mail chan_clan@shaw.ca or go online
(www.canadahelps.org/en/pages/troys-trail/).
The momentum the event has generated still amazes Chandler.
"Going for five years … It's almost like it has wheels of its own," he said. "It's like it's going by itself, which is really good. It's nice to see."
jougler@postmedia.com
On Twitter: @JeffreyOugler
Troy's Trail about generating awareness about hydrocephalus
Monday, June 8, 2015 3:39:24 EDT PM
Troy Chandler was just 28 when diagnosed with hydrocephalus, a disorder in which
fluid buildup causes pressure inside the head, which can injure the brain and cause it damage.
SAULT STE. MARIE - It’s become as much about networking as netting funds.
The fourth annual Troy’s Trail, the annual Sault Ste. Marie waterfront walk geared as both a fund-raiser and means of generating awareness about hydrocephalus, both brings together those affected by the disorder, commonly referred to as water on the brain, and generates research dollars for hydrocephalus and/or spina bifida.
"It is a good feeling … It's basically about connecting with others and getting that awareness out there,” said Annette Chandler, who along with her husband, Troy, are chief architects of the event.
“We feel that maybe that it is helping to make a difference just because of the response and participation."
Troy, now in his late 40s, was just 28 when diagnosed with hydrocephalus, a disorder in which fluid buildup causes pressure inside the head, which can injure the brain and cause it damage.
"Every year it's always a learning curve,” Annette said.
Each year, the couple meets people of all ages being diagnosed with hydrocephalus. Last year, it was a man well in his 70s and, most recently, they learned of a girl, 6,
who was also found to have the disorder.
"You just never know,” Annette said.
“Any age, any time. You're thinking when you hear hydrocephalus, it just happens with babies, the water on the brain thing. But, so much, it does go directly with spina bifida."
Most people who have spina bifida have hydrocephalus. But not always.
“Some have one or the other. You start to learn a lot,” Annette said. “We share stories."
Dollars, too.
Last year, more than $2,000 was generated.
This year, corporate donations in the form of gift certificates and other such things will be distributed via raffles and give-aways. There will also be refreshments.
"That makes it good for everybody,” Annette said.
Since Sault Ste. Marie does not have a hydrocephalus support group, the couple became members of the Spina Bifida & Hydrocephalus Association of Ontario (SB&H) and have been putting the word out via traditional methods and, perhaps most effectively, through social media.
This year’s event kicks off Saturday at 11:30 a.m. at Clergue Park, by the Art Gallery of Algoma. The walk to the Civic Centre and back takes about 10 minutes.
Troy’s Trail donations can be made by calling 705-946-4532 or 1-800-387-1575, or online at https://www.canadahelps.org/GivingPages/GivingPage.aspx?gpID=18698.
All proceeds go toward research, support programs and essential services provided by the Spina Bifida and Hydrocephalus Association of Ontario.
As important as the actual walk is, it’s post-event networking that makes everything worthwhile, Annette said.
"It is more personal because, basically, it’s the people who have the condition and it's their families and friends who come out for their support and the association,” Annette said. "It's twofold. It's just wonderful. We just pray for nice weather and hope everybody has a good time. It's just awesome."
Not everyone who has the disorder gets seizures, but because Troy does, he must take medication, which, in his case, brought on osteoporosis. His work as a Shoppers Drug Mart merchandiser had to be scaled back to part-time following the diagnosis.
When Troy was diagnosed, the couple had an infant daughter — a son would arrive that same year, 1994 — and the Chandlers faced an uncertain future. Especially given the fact they knew hardly anyone here who shared their dilemma. Since then, they've met several families also affected.
Annette said despite “memory issues,” Troy is doing well; he will partake in the walk.
"He keeps himself busy,” she added. “He's one of those, he can't sit still, so he tries to do what he can when he can."
Troy salutes his wife as the one who rarely rests, being a great support throughout his illness.
"She keeps the wheel going, doing the organizing and the co-ordinating of all the little things that have to be done," he added. "She keeps me positive and I am forever grateful and lucky to have her by my side."
SAULT ONLINE
By Content Team - June 3, 2015
WALK WITH TROY
Celebrate National Spina Bifida & Hydrocephalus Awareness Month at the 4th Annual Troy’s Trail Spirit Walk Run at Clergue Park Boardwalk this Saturday, June 13.
Spina bifida is the number one permanently disabling neural tube birth defect in Canada where the brain and spine, or just the spine, fails to develop properly within the womb. One in 1,300 babies is born with spina bifida and even more have hydrocephalus,known as water on the brain. In Canada, hydrocephalus is the number one cause for brain surgery in babies. This build up of fluid can lead to swelling and can permanently damage the brain causing both physical and mental growth, or even death if not treated. Both of these disorders are disabling and lifelong presenting daily hardships.
As representatives of Sault Ste. Marie for the Spina Bifida & Hydrocephalus Association of Ontario, our goal is to continue creating awareness. We want people to know that we’re here, that we’re a support system, and we don’t want anyone to feel like they have to go through this alone like we did.
Troy’s Trail is part of an Annual Ontario-wide one-of-a-kind grassroots event where families living with the challenges of spina bifida and hydrocephalus raise awareness of these neurological conditions at the local level. SB&H is the only organization in the province providing support and comprehensive information to thousands of parents, youth and adults living with SB&H. These funds are critical to the Association’s ability to provide vital programs and services as the association receives no government funding
Each year we have met and talked with several nice people, shared our stories and experiences, and have truly been there and helped one another.
The awareness is spreading…we are growing, and we feel we are making a difference!
Troy's Trail Spirit Wheel Walk Run
Join Troy's Trail, the first Spirit Wheel Walk Run (SWWR) in Sault Ste. All proceeds will go to the Spina Bifida & Hydrocephalus Association of Ontario (SB&H) to support vital programs, services and research.
Troy Chandler, who has hydrocephalus, and his wife, Annette are organizing this SWWR to raise awareness and show support for all Sault Ste. Marie residents with hydrocephalus and spina bifida. To support Troy's Trail, please contact Troy at 705-946-4532.
NEWS RELEASE
Wednesday, June 03, 2015 by: SooToday.com Staff
SPINA BIFIDA & HYDOCEPHALUS
*************************
June is Spina Bifida and Hydrocephalus month
Hydrocephalus, also known as water on the brain, can lead to swelling and can permanently damage the brain causing both physical and mental growth.
Spina Bifida, is a neural tube birth defect in which either the brain and spine, or, only the spine, fails to develop properly in the womb.
Both of these disorders are disabling and lifelong presenting daily hardships.
We are representatives of Sault Ste. Marie for the Spina Bifida & Hydrocephalus Association of Ontario. Our goal is to continue creating awareness.
Therefore, on behalf of everyone and their families in Sault Ste. Marie and surrounding area who are affected by these 2 conditions, we are holding TROY’S TRAIL, a fundraising walk, scheduled for June 13 at 11:30 a.m. down at the Clergue Park Boardwalk by the Art Gallery.
This is our 4th year holding the event.
We have been collecting pledges and we will continue to do so up until the walk.
Every dollar raised goes to the Spina Bifida & Hydrocephalus Association of Ontario to help with research, support programs, and other services to help families whose lives are affected by these conditions.
The Association does NOT receive any government funding, so anything WE members can do to help, goes a long way.
Each year we have met and talked with several nice people, shared our stories and experiences, and have truly been there and helped one another.
The awareness is spreading…we are growing, and we feel we are making a difference.
*************************
TROY'S TRAIL -- Teija Lappaloinen, 5, Matti Lappaloinen, 3, Oliver Bennetto, 4, Troy Chandler, Raine Whalen, 4 and Annie Martin, 9, are a few of the faces seen during the fourth annual Troy's Trail walk at Clergue Park, a fundraiser and means of developing awareness about hydrocephalus..........................
Years ago, a young Christian Provenzano applied for a job at the Stel Hotel in Sault Ste. Marie and got it.
It was his first job. His manager was Troy Chandler.
25 years later, now Mayor Christian Provenzano helped with bringing awareness to a rare disease known as hydrocephalus or water on the brain. He was there for his now friend, Troy Chandler.
Provenzano was joined by Ward 2 councillor Susan Myers and several others to take part in the fourth annual Troy’s Trail.
It’s that kind of support that means the world to Troy and Annette Chandler. The couple took it upon themselves to organize a yearly fundraiser and awareness campaign for Spina Bifida & Hydrocephalus in Sault Ste. Marie.
Chandler was diagnosed with hydrocephalus in 1994, since then he has undergone 12 surgeries. Discovering their was no support group, he and his wife Annette began to research and then bring awareness to both hydrocephalus and joined the Spina Bifida & Hydrocephalus Association of Ontario.
Ironically, the Sault is one of the largest walks in Ontario for the association. The walk is staged at Clergue Park and the waterfront. All proceeds raised locally go to the provincial office.
The walk continues to get bigger each year. Approximately 70 people took part in the walk under ideal conditions on the city’s waterfront Saturday.
Hydrocephalus and Happily Ever After
It’s Victoria Day and I’m standing on the front steps of the Chandler home. Annette swings open the door before I can knock and warmly welcomes me in. Her husband Troy is standing behind her smiling, his hands clasped together. This is the first time we’ve all met. Troy has lived with hydrocephalus for his entire life but wasn’t diagnosed with the condition until he was 28 yrs. old. That was almost 20 years ago.
Before we get down to business to talk about ‘Troy’s Trail’ – a local walk organized by the Chandlers to raise money for the Spina Bifida and Hydrocephalus Association of Ontario (SB&H), Troy goes off into the kitchen to make me a tea. Annette and I head to the living room and I feel a bit guilty as I settle into a big overstuffed lazy boy draped with a Bruins throw. I’m pretty sure I’m sitting in Papa Bear’s chair.
As Troy and Annette begin to talk I realize that this is going to be a love story.
*****
The Spina Bifida and Hydrocephalus Association provides a concise definition of hydrocephalus.
“Hydrocephalus comes from the Greek word “hydro,” meaning water, and “cephalus,” meaning head. It is a neurological condition that exists when excess cerebrospinal fluid (CSF) builds up in cavities, called ventricles, inside the brain. Fluid accumulates in the ventricles when the body produces more CSF in a day than it can reabsorb. This accumulation causes enlargement of the ventricles, resulting in hydrocephalus.”
The accumulation of CSF could create potentially harmful pressures on the tissues of the brain. In the worst cases, the condition could result in severe brain damage or death. Untreated hydrocephalus has a 50 - 60% death rate, with the survivors having varying degrees of intellectual, physical, and neurological disabilities.
Hydrocephalus is a congenital condition that cannot be cured. It is usually treated by surgically implanting a shunt that takes excess CSF from the brain to another part of the body. A shunt consists of two catheters and a one-way valve. The valve regulates the amount, flow direction, and pressure of cerebrospinal fluid out of the brain’s ventricles. As the pressure of cerebrospinal fluid inside the brain increases, the one-way valve opens and the excessive fluid drains down into the stomach.
*****
Troy and Annette are high school sweethearts. They met in 1984 and were married in 1991.
It was March 1994. Troy had finished his shift at the work and headed home. He got home around 2:30 a.m.. Annette and their two and a half year old daughter were upstairs sleeping. He fixed himself a rum and coke and plopped down in front of the TV to try to unwind a bit before heading off to bed about half an hour later. And that’s the last thing he remembers about that night.
Annette was jostled awake by Troy who was seizuring in the bed next to her. Annette did not know what was happening but she did know that they needed an ambulance. Arriving at the hospital Troy was immediately sent for a CAT scan.
“My head was all ballooned up with fluid. They knew right away. They told us that we had to go to Sudbury to see a neurologist immediately. So went down to Sudbury thinking that we were going for a consultation. But once we were there the doctor told us that we weren’t going home. I needed to have the surgery right away.”
It was a huge shock for the couple and Annette was terrified for her young husband’s life.
Since the condition is typically congenital Troy is very lucky that he did not have a far more serious outcome from being untreated for twenty-eight years. However, there were a few red flags when as he was growing up.
“When I was younger I was always teased for having a big head. Well I do- but I just thought nothing of it. And then when I was in high school and university I used to get numbness in my arm and my face and I would get so many headaches. The doctor told me it was just stress and to take a couple of Tylenols.”
Troy’s first surgery went well. For five years there weren’t any problems but the years that followed after that were a nightmare. Troy’s shunt malfunctioned nine times. During the worst of these trials Troy underwent surgery four times in one week.
Annette remembers that time very well. Her eyes widen as she tells the story- like she’s reliving it all over again. “His shunt kept blocking and they didn’t know why. I thought I was going to lose him. I really did. I didn’t know what I was going to do. We had two children at the time.”
Thankfully the shunt stopped blocking. Today Troy has gone ten years without complications with his shunt or seizures. Troy’s condition of hydrocephalus can trigger seizures. Though it’s been a decade since his last seizure he continues to take medication daily to ensure that it stays that way. The trade-off is osteoporosis caused by the seizure medication.
Annette has become finely attuned to Troy’s warning signs. She often knows before he does when something is wrong. “Now when it blocks he doesn’t know that it’s happening. He just becomes progressively lethargic and sometimes one of his pupils is dilated.”
There aren’t any neurologists or for that matter neurosurgeons in Sault Ste. Marie. Though these specialists travel to the Sault monthly any consultation for Troy’s condition happens in Sudbury. However, Troy has been fortunate to make a special arrangement with his optometrist.
“There’s an optic nerve behind the eye that swells up if fluid is building up. That’s why his pupil might be dilated. We have an arrangement with his optometrist- it’s covered through OHIP, that he can go in without an appointment. She can look into his eyes and observe the condition of his optic nerve. So when there is a sign that something might be going wrong we can get it checked out right away. We panic all the time. We never know if he’s having a normal headache or if it’s the shunt. This at least puts us at ease.”
As Annette is telling me this Troy is watching her with admiration and smiling. “She actually knows more about this stuff then the doctors you know!”
*****
Over the past twenty years Troy and Annette have become expert in living with hydrocephalus. And they have found humour in what the condition sometimes brings and laugh where they can. The family often teases Troy about his short-term memory loss, a side effect of hydrocephalus.
Troy loses numerous items at a time including the car. But he’s adapted. “I’ve gone into the Station Mall a couple of times now and I walk out the wrong entrance and I can’t find the car. So now I’ve trained myself. Every time I have to go somewhere I know before I get there where I’m going to park. I park in the same spot every time.”
Even throughout our conversation every now and then Troy will look to Annette for confirmation- to make sure he got a date or a location correct. And every now and then Annette will softly correct a detail that Troy might have confused slightly.
After his diagnosis the Chandler’s felt like they were adrift without a paddle. Troy and Annette looked for support groups or foundations that could provide information and guidance but there were no such entities in Sault Ste. Marie.
They took a bad situation and made something good out of it. Annette decided to create Troy’s website . She wrote about Troy’s story and their collective experience living with hydrocephalus. Annette also linked information about the condition to the page. The website was a tool to reach out and to hopefully have someone reach back. And people did.
“It was great. I thought ‘wow, we’re really making a connection here.’ And that’s what we really wanted to do. To find other people like us,” said Annette.
Around the same time the SB&H did a feature story about Troy and posted it on their website. The story received a great response. The Association approached the Chandlers and invited them to be the local contacts for SB&H. They accepted. The Chandlers became the ‘something’ that they had been seeking for so long- the support for people who suffer from hydrocephalus and also for those with spina bifida.
It was Christmas morning when the Chandlers received a phone call. It was a man calling from a hospital bed in Toronto. He had read Troy’s story on the website and wanted to speak to him.
Troy talks about the phone call with a lot of passion. “This guy was flown in from New Brunswick to Toronto. He was just diagnosed with hydrocephalus and was waiting for his surgery. He was completely alone. We talked for a long time. I get goose bumps thinking about it because I was able to be there for someone. I was able to help somebody.”
*****
June is Spina Bifida and Hydrocephalus Awareness month. The Chandlers are organizing the second annual ‘Troy’s Trail: Spirit Wheel Walk Run. On June 8th families, friends, strangers and those living with spina bifida and hydrocephalus will gather at Clergue Park at 11 a.m.. The route is a manageable length. Participants will walk along the boardwalk and back. Money raised for the event goes directly to SB&H.
However the event isn’t just about raising dollars. Troy and Annette hope to educate and develop new connections in the community.
“The walk was started to create awareness about this condition. And if we could reach a couple of new people every year that live with this that would be great. We want people to know that we’re here, that we’re a support system. They can send us an email, pick up the phone or we can get together for coffee,” Troy pauses a moment. “We don’t want anyone to feel like they have to go through this alone like we did. Were still living this life right now but we’ve been through everything. Now we want to pay if forward.”
After meeting the Chandler’s I’m convinced that this couple could teach people about a lot more than living with hydrocephalus. The still young couple have loved each other for thirty years through the ups and downs of the condition; the uncertainty of what’s around the corner; the financial hardship that families experience when dealing with perpetual health issues; and then the everyday obstacles of raising a family and holding down jobs.
At the end of the day Troy and Annette are like every other married couple. They settle in for the night, enjoy a glass of wine or two and watch Survivor. Of course the PVR is taping the episode as they’re watching it. Sometimes Troy wakes up the next morning and can’t remember who was voted off the island. He gets to watch it twice!
Troy and Annette haven’t just stuck out for better or worse, for richer or poorer and in sickeness and health- they’ve kicked it in the butt. But more so, they have figured out the happily ever after bit too.
By Steffanie Petroni, Local2 - Sault Ste. Marie
Troy's Trail takes off again
By Jeffrey Ougler, Sault Star
Sunday, June 5, 2016 12:59:05 EDT PM
SAULT STE. MARIE -
Troy Chandler and his sister, Kallie Chandler, stretch Saturday in preparation for Troy’s Trail fifth annual Walk for Hydrocephalus & Spina Bifida, a fundraiser and vehicle for generating awareness about hydrocephalus, launched by Troy and his wife, Annette. About 100 partook in the walk, which began at 1 p.m. on the boardwalk at Clergue Park, by the Art Gallery of Algoma. And $2,500 was raised, which Chandler said, is the most collected so far.
Spina Bifida & Hydrocephalus Association of Ontario
Thanks The Sault Star for sharing the story about this upcoming SWWR event - Troy's Trail! For Troy Chandler raising awareness about hydrocephalus is important all year long but he makes a special effort every June. On Monday afternoon he'll be at City Hall in Sault Ste. Marie when June is proclaimed Spina Bifida & Hydrocephalus Awareness Month in his city.
Local News
Troy's trail leads to greater awareness and $2,000
Monday, June 10, 2013 by: SooToday.com Staff
NEWS RELEASE
TROY'S TRAIL SPIRIT WALK
*************************
The Troy's Trail Spirit Walk for Spina Bifida & Hydrocephalus awareness month held Saturday, June 8 down at the boardwalk in Clergue Park was a huge success.
The weather was beautiful, and the turnout was great.
Friends and families including children and pets participated in the walk this year.
We couldn’t be happier.
Everyone seem to enjoy themselves and had fun.
Media played a huge part in the success of this year’s spirit walk.
Not only did we succeed in creating awareness, but we were able to meet and connect with some new people, as well as raise just over $2,000.00 in donations and pledges.
When people come together great things happen.
Troy Doesn’t Walk Alone
By Craig Huckerby - June 29, 2014
In 1994, Troy Chandler was starting to experience the unknown. “Out of the blue he started having headaches and seizures” Annette , Troy’s wife and organizer told saultonline.com Saturday at the third annual “Troy’s Trail” for hydrocephalus and/or spina bifida.
Chandler was diagnosed with hydrocephalus (water on the brain) and has since undergone 12 operations with no guarantee that he won’t need another.
The annual walk attracted more than 50 people supporting the cause.
With no support group locally, the couple joined the Spina Bifida & Hydrocephalus Association of Ontario and started a local fundraising event to bring awareness to the illness.
Saultonline.com caught up with the Chandler’s as the 3rd annual walk was getting underway to tell us more about their personal story.
For Grandma
Ali Pearson/Sault This Week
Wednesday, July 2, 2014 5:59:10 EDT PM
Cousins Alaina DeRubeis, 4, and Teija Lappalainen, 4, were out Saturday morning in Clergue Park in support of their grandmother, Christine Deluco, during Troy’s Trail, the 3rd Annual Spirit Wheel Walk Run to raise awareness and offer support for all Sault Ste. Marie individuals who have hydrocephalus and spina bifida.
Ali Pearson/Sault This Week
OUTSTANDING MEMBER CONTRIBUTION
Our members contribute tremendously to the mission of SB&H in many ways. Some volunteer by organizing support groups and social events, others work bingo events, sell lottery calendars, organize third party and Spirit Wheel Walk Run events across the province. These activities engage those living with the conditions in their communities, increase awareness of sb/h, generate community support and raise much needed funds for our programs and services. We would like to take this opportunity to acknowledge a few of these individuals for their outstanding achievements and who have consistently shown their spirit and passion for the Association.
Troy & Annette Chandler
As an adult living with hydrocephalus in Sault Ste. Marie, Troy wanted to connect with those in a similar situation. His wife, Annette created a website about his experiences and they connected with SB&H. They readily volunteered and became the community contacts for the region. We have featured their story in Current magazine and on our website. Since 2012, the Chandler’s have raised the profile of hydrocephalus and spina bifida in their northern Ontario community by selling lottery calendars and organizing an annual Spirit Wheel Walk Run event called Troy’s Trail. The walks have garnered the attention of the media, raising the profile of the conditions and the Association. To date, Troy’s Trail has raised over $5,000. This couple’s commitment to each other is inspiring and their commitment to supporting families living with hydrocephalus and spina bifida is the reason we are honouring Troy and Annette today with our Citation of Merit award.
Spina Bifida & Hydrocephalus Association of Ontario
Troy & Annette Chandler have been honoured with the 2014 SB&H Citation of Merit Award for their outstanding contributions as SB&H members.
The community contacts for their region, their journey with Troy’s hydrocephalus has been inspirational.
They have raised the profile of hydrocephalus & spina bifida in Sault Ste. Marie & area by and organizing the annual Troy’s Trail Spirit Wheel Walk Run & selling lottery calendars.
Read more about the Chandlers & other remarkable SB&H volunteers at http://www.sbhao.on.ca/volunteer-opportunities.
NEWS
Walk, cycle, run or roll for spina bifida and Hydrocephalus
By Mike Verdone/Sault Star
Troy Chandler lived a relatively normal life growing up in Sault Ste. Marie.
He completed elementary school then went on to attend St. Mary's College and Bawating Collegiate.
Chandler married his high-school sweetheart and graduated from Lake Superior State University with a bachelor of science in business administration.
He and his wife, Annette, had two children in the early '90s.
But nothing prepared him for what happened a few years later when he was diagnosed in 1994 — at the age of 28 — with hydrocephalus, a buildup of fluid inside the skull that leads to brain swelling.
“There's no cure for it. It's just something that happens,” Chandler says.
The local man underwent an operation to have a shunt inserted that allows the fluid around his brain to drain. But other symptoms have also appeared in recent years.
“I've been to Sudbury probably about 10 times now for shunt revisions because the shunts malfunction. There's stuff going on now (with me) with seizures, with osteoporosis, memory loss, all stuff associated with it now,” says the 45-year-old local man.
Chandler does not have spina bifida, but he says most people afflicted with spina bifida also have hydrocephalus.
June is awareness month for the Spina Bifida and Hydrocephalus Association (SP&H) of Ontario, which is sponsoring Spirit Wheel Walk Run events in communities across the province for the fifth straight year.
Events have been staged by (SP&H) in other cities over the years, but never in the Sault.
When Chandler was asked if he would consider organizing a local walk, he was eager.
“We're just trying to get awareness out there about spina bifida and hydrocephalus,” he says.
Besides family members and friends, Chandler is unsure how many people will participate.He says they'll start slow this year with a short trek along the boardwalk.
Participants can walk, cycle, run or complete the course in a wheelchair.
“It's our first year doing it. It's probably not going to be anything huge.”
Participants can donate money or seek pledges, but are not required to secure donations in order to take part. Everyone is welcome.
All money raised will go toward research, support programs and essential services provided by SB&H.
Although there are several people in the Sault with spina bifida and hydrocephalus, Chandler says there is “not a lot of support.” However, things are slowly changing.
“It's something that's building and we're finding that there are more and more people out there. You're starting to feel like you're not alone anymore,” says Chandler, who will walk the course on Saturday.
CLICK ON PICTURE ABOVE OR LINK BELOW
CTV Northern Ontario: Helping Others
A Sault Ste. Marie man with a rare brain disease is helping others with the same condition with his annual event
Troy's Trail 2015, most well-attended to date
Monday, June 15, 2015 9:31:22 EDT AM
A large crowd gathered Saturday, June 13 to participate in the fourth annual Troy's Trail, a walk to fundraise and spread awareness on hydrocephalus and spina bifida.
Troy Chandler, initiator of the fundraiser, expressed his gratitude that this event was the most well-attended Troy's Trail event to date. Among the many supporters were Mayor Christian Provenzano and his newlywed wife Kyleigh.
According to the even Facebook page, all proceeds from Troy's Trail will go towards research, support programs, and essential services provided by the Spina Bifida and Hydrocephalus Association of Ontario
Katie Huckson/SAULT STAR
The LaFord family takes part in their first Troy's Trail walk to fundraise and spread awareness about hydrocephalus at Clergue Park in Sault Ste. Marie on Saturday, June 13. Jessy LaFord (bottom left) has hydrocephalus and had surgery in April to receive a cerebral shunt.
NEWS LOCAL
To receive portion of Healthgear Medical
Mart sales on mobility aids
Tuesday, October 27, 2015 2:39:33 EDT PM
SAULT STE. MARIE - Troy’s Trail is getting more legs in its effort to both generate awareness about and research dollars for hydrocephalus and hydrocephalus and/ or spina bifida.
The annual fundraiser, launched by Troy and Annette Chandler, takes the form of a waterfront walk that has gained steam since coming into being. Last June, the Chandlers hosted the fourth annual walk.
Between Nov. 3-17, Healthgear Medical Mart, at 262 Queen St. E., will donate 10% of all sales made on mobility aids to give the 2016 walk a head start.
The cause hits home for the Chandlers. Troy has hydrocephalus, a disorder in which fluid buildup causes pressure inside the head, which can injure the brain and cause it damage.
All Troy Trail proceeds go toward research, support programs and essential services provided by the Spina Bifida and Hydrocephalus Association of Ontario.
To raise awareness of Troy’s Trail, Healthgear Medical Mart’s asks people to visit its Facebook page: https://www.facebook.com/HealthgearMedical?fref=ts.
Those who like and share the fundraiser awareness post will have a chance to win two Soo Greyhounds tickets, a $50 gift certificate for Solo Trattoria and a Healthgear Medical Mart coupon.
Troy’s Trail continues to attract more participation, interest from all over
Sunday, June 11, 2017 8:16:15 EDT PM
SAULT STE. MARIE - Bambang Sadewo
Special to The Star
The sixth annual Troy’s Trail walk, which aims to raise awareness about hydrocephalus and raise money for the Spina Bifida and Hydrocephalus Association of Ontario, took place on Saturday in Sault Ste. Marie’s waterfront.
Troy Chandler, who started the community event with his wife, Annette, said he can’t believe how big the event has grown.
“It has blossomed into something that even we can’t believe,” Chandler said. “First year we had 12 people. Now we’re pushing about 100 people every year. We’ve raised a lot of awareness in the city.”
He said the event has had a positive impact on making people in the city become more aware of the illness.
“People are calling us, people are calling our friends. It’s working, the walk is working. The support group that we didn’t have in town, it has kind of become its own support group now,” Chandler told the Sault Star, adding that the walk is also a time for people to come together and celebrate.
Ward 2 Coun. Susan Myers, who was there to show her support, said she’s proud of what the group has achieved.
“I’m really proud of Troy and Annette,” Myers said. “He raised the profile in such a way that now people know of this illness.”
She calls for the community to “learn, be educated, and come out and support events like this.”
While the day started on the dreary side in the morning, clouds gave way to the sun a few hours before the start of the walk at 1 p.m.
All proceeds go toward research, support programs and essential services provided by the Spina Bifida and Hydrocephalus Association of Ontario.
Chandler, 50, was just 28 when diagnosed with hydrocephalus, a disorder in which fluid buildup causes pressure inside the head, which can injure the brain and cause it damage. Not everyone who has the disorder gets seizures, but because Chandler does, he must take medication, which, in his case, brought on osteoporosis. His work as a Shoppers Drug Mart merchandiser had to be scaled back to part-time following the diagnosis.
Chandler said he hopes that he’ll be able to continue doing the event for years to come.
“We’ve grown it into something that we didn’t know where it was going to go. Now that we see where it’s going, we couldn’t be any more happier,” he said. “As long as they know that we’re out there and they can contact us — we’re doing something right.”
To donate, go to www.canadahelps.org/en/pages/troys-trail/
Troy's Trail trots for Spina Bifida and Hydrocephalus
As donations come in, organizers say they are on their way to raise more than last year's total of over $2500
Jeff Klassen/SooToday
Making a difference one step at a time
Around 110 people reportedly showed up to the Troy’s Trail at Clergue Park on Saturday. The event is an annual charity walk that raises money for the Spina Bifida & Hydrocephalus Association of Ontario and the money is used for research and services for those who suffer from the condition hydcrocephalus and the disease spina bifida.
Organizers say haven’t finalized their totals but so far they’ve raised over $2,000 and once all the online pledges and donations are in next week they expect to beat last year’s total of over $2,500.
In 1994 Troy Chandler was diagnosed with having hydrocephalus and one of the first things he did was start a website to try and connect with others that also have the condition. “I felt alone, (I thought) let’s find out if there are other people in the Sault with this,” he said. Since then Chandler has been helping to form a local network of people with the same issue.
Hydrocephalus is characterized as fluid build-up in the brain while spina bifida is a spinal cord malformation that can result in hydrocephalus.
In 2012 Chandler started Troy’s Trail as a way to raise money and connect with other locals. It built up from just over 10 people the first year to what it is today.
Chandler said he now knows 30-40 people locally with hydrocephalus and there are more out there he hopes to connect with.
“We’ve become a nice family. We didn’t know what would happen when we started it,” said Chandler. “It’s really working to bring people together and working to help people when they have a problem. I’m really proud of it.”
June is Spina Bifida and Hydrocephalus Awareness Month.
By Craig Huckerby -
June 8, 2017
It’s not a big walk, it may take 15 minutes of your day, but for the Sault Ste. Marie couple who has organized Troy’s Trail for the last six years, you being there means the world to them.
Troy Chandler and his wife Annette bring awareness to Spina Bifida and Hydrocehalus. The walk also raises funds for the S&H association of Ontario for research, programs and services.
“The walk brings everyone together for mutual support, courage, comfort, hope and friendship” said Troy Chandler who suffers from hydrocephalus . “It wouldn’t be a success without the support of the community”
To date, the annual walk has raised over $10,000 for the cause.
Sixth annual Troy’s Trail, a fundraiser and vehicle for generating awareness about hydrocephalus, set for Saturday
SAULT STE. MARIE - It’s fair to say Troy’s Trail keeps growing legs.
Now coming up on its sixth year, the annual fundraiser and vehicle for generating awareness about hydrocephalus continues to do its duty by raising money as well as creating contacts far beyond on Sault Ste. Marie and Algoma, says one of the project’s architects.
“This walk has given us a purpose, and we’re seeing it work,” says Troy Chandler, who, along with his wife, Annette, launched the campaign to assist others, such as himself, diagnosed with the disorder. “We’re really proud that not only do we get the support, but we’re seeing it work because people are calling us and we’re able to help them.”
This year’s event is Saturday, with registration beginning at the south end of Clergue Park by the Art Gallery of Algoma. The walk begins at 1 p.m. along the boardwalk, consisting of about a 15-minute loop from the gallery to the Civic Centre.
The event goes rain or shine. If there is precipitation, registration will be in a room downstairs at Sault Ste. Marie Public Library.
Since Sault Ste. Marie does not have a hydrocephalus support group, the couple became members of the Spina Bifida Hydrocephalus Association of Ontario (SBH) and have been putting the word out via traditional methods and social media. Last year, more than $2,500 was raised and about 100 walked. To donate, call 705-946-4532, e-mail chan_clan@shaw.ca or go online (www.canadahelps.org/en/pages/troys-trail/).
All proceeds go toward research, support programs and essential services provided by the Spina Bifida and Hydrocephalus Association of Ontario.
Chandler, 50, was just 28 when diagnosed with hydrocephalus, a disorder in which fluid buildup causes pressure inside the head, which can injure the brain and cause it damage. Not everyone who has the disorder gets seizures, but because Chandler does, he must take medication, which, in his case, brought on osteoporosis. His work as a Shoppers Drug Mart merchandiser had to be scaled back to part-time following the diagnosis.
These days, Chandler says he usually feels “pretty good” and, thanks to medications, has been free of seizures.
“One-hundred per cent honest, I wish it got better, but I’m a very nervous kind of guy,” he said. “Anxiety really goes hand in hand with this thing.
“I’m a very day-to-day person. I’m a very anxious, very nervous kind of on-the-edge person. But I’m a happy person.”
jougler@postmedia.com
On Twitter: @JeffreyOugler