2016 Ohtahara Syndrome Family Gathering

posted Apr 13, 2016, 7:40 PM by Aarons Ohtahara

We are so happy to be hosting our next Ohtahara Syndrome Family Gathering. This year we will be hosting the event in beautiful and exciting Mammoth Cave National Park! We are taking on this adventure with five families; taking our children into nature and even a cave or two! How cool for our children to be experiencing nature. As far as we know this will be the first time that any of our children have been to Mammoth Cave NP. We have been busy talking with the park and looking up various trails that are accessible to us. We have hiking, tours, and Junior Ranger badges on our agenda! I'm so excited for our children to be Junior Rangers at the end of the trip.

In 2016 the National Parks will be celebrating 100 years. They are doing this with a theme of every child in the park/Find your park. We are taking this to heart and creating an experience where EVERY child can be in the park and experience to the best of their own abilities! Please follow our Twitter and Facebook pages for photos and information. Please contact us for more information or register to attend https://www.eventbrite.com/e/2016-ohtahara-syndrome-conference-and-family-gathering-tickets-19923920984

Mammoth Cave National Park
Sunday, May 29, 2016

Rare Disease - Love So Rare Dinner and Fundraising Event

posted Jan 28, 2016, 8:55 AM by Aarons Ohtahara

There are over 7,000 rare diseases impacting the lives of 350 million people worldwide. Join Aaron's Ohtahara Foundation to increase awareness for rare disease and hear two voices of rare disease. Dan McDonald and Lauren Gibilisco will speak about the impact of rare disease on their lives.

The evening includes a sloppy joe dinner, dessert, speakers, and basket bidding option. The evening’s proceeds will go towards advancing rare disease awareness efforts for both Ohtahara Syndrome and Wolfram Syndrome.

Ticket Information: $10  Dinner tickets (Age six and over)
                                  $5  Child Dinner tickets (Age five and under)

Facebook Event Page: https://www.facebook.com/events/956541701050155/



Volleyball For Epilepsy - July 25, 2015

posted May 11, 2015, 8:44 PM by Aarons Ohtahara   [ updated Jul 21, 2015, 8:55 PM ]

New Location but same great tournament!

Sinnott's Sand Bar in Papillion NE will now be the location for this year's tournament. We will miss the Digz but sadly the location closed its doors last year. We loved having the first three tournaments at the Digz and we are looking forward to many more with Sinnott's!

This is a double elimination, coed (we are asking for min. 2 female players per team) volleyball tournament to raise awareness and funds for Aaron's Ohtahara Foundation. Funds will support our objectives of Research, Awareness, and Family Support.

Date: Sat., July 25, 2015
Location: Sinnott's Sand Bar 204 E Lincoln St, Papillion, NE 68046
Time: 11:00-5:00pm
Cost: $90/team

Registration forms are below! Please contact us if you have any questions!!

Rare Disease Day 2015

posted Jan 19, 2015, 8:55 PM by Aarons Ohtahara

Another new year and another time to celebrate RARE! Rare Disease Day is February 28, 2015. We will be celebrating and honoring all those with a rare disease (but especially Ohtahara Syndrome - of course!) at the Sanford CoRDS Rare Disease Day Symposium.  We are honored to be celebrating with them for three years now. It is such a blessing to speak with other parents and families that have family members diagnosed with a rare disease, not to mention learning from a variety of medical professionals regarding their work.  One day perhaps Ohtahara Syndrome will be featured as a topic and with the current research from Boston we may not be far off!

We hope you will celebrate RARE with us on February 28th 2015. Check back for photo updates and some symposium highlights! Here is a photo from last year

World Ohtahara Syndrome Awareness Day - November 15

posted Oct 23, 2014, 9:58 PM by Aarons Ohtahara   [ updated Sep 27, 2016, 3:35 PM ]


Mark your calendars!!
Save the date!!
Share about Ohtahara Syndrome!!

A special thank you goes out to the families that participated in our survey, our board of directors, and our regional representatives for designating and recognizing November 15th as the first annual World Ohtahara Syndrome Awareness Day! This day is for remembering and honoring ALL of our children diagnosed with Ohtahara Syndrome, this day is for awareness.  Please join us in our awareness efforts by sharing with someone about Ohtahara Syndrome. Our children may not speak, but they can still have a voice! Be their advocate, be their voice!!

5 Ways You Can Help Be Part of World OS Day

  1. Share with others about Ohtahara Syndrome, how is has impacted your family and definitely share about your child!
  2. Use the hashtag #WorldOSday for social media posts and photos
  3. Share the below save the date or the save the date that has your child's name represented
  4. Wear purple
  5. Send in a proclamation to your state in order to have World Ohtahara Syndrome Awareness Day recognized in your state (see file attachment below)





Please see the attached files for a draft proclamation to recognize World Ohtahara Syndrome Awareness Day in your state, then let us know you are sending one in! Thank you!!

Volleyball For Epilepsy 2014

posted Apr 21, 2014, 12:21 PM by Aarons Ohtahara   [ updated Jul 15, 2014, 7:43 PM ]

Summer to us means Volleyball Tournament!  We are hosting our third Volleyball For Epilepsy Tournament and hope you can join us for another great day!! 



Saturday, July 12, 2014
Starting at 9:00am

The Digz
4428 South 140th Street
Omaha, NE 68137

Cost: $90/team 
        Six (6) person max and one female minimum
                                                Co-ed/Double elimination tournament

                                                            Free single topping pizza to each team day of tournament!!

                                                        VOLLEYBALL FOR EPILEPSY UPDATE

We had a fantastic day complete with a lot of volleyball, great teams/players, good food, and some sun! Did I mention all of this to raise awareness of Ohtahara Syndrome and to help us in our goals to meet our objectives of research, awareness, and family support?!  Accomplished!!

We are so blessed with the support of so many, this tournament began three years ago and has lead us to meet some wonderful, kind people- who all love volleyball!  Thank you to all who joined us for the tournament, we are looking forward to next year.  See you next summer!

2014 Ohtahara Syndrome Conference and Family Gathering...

posted Mar 14, 2014, 7:41 AM by Aarons Ohtahara   [ updated Jun 29, 2014, 7:55 PM ]

We are excited to announce our second conference!  Thank you to those that are making it possible, we appreciate your help so much!!! 

Boston, MA

We have been working with the Boston Children's Hospital Neurology department (also conducting the Ohtahara Research Study) to plan this conference.  Together we have worked to find the best deals for hotels, conference locations, and speaking topics for the conference day.  We are also working with a wonderful family living in the Boston area, whose little girl will be our child ambassador; welcoming all of our families!  This family has helped tremendously in the planning of our family day on Saturday.  It is nice to have a family in the area that is able to help! Thank you!!

Dates:  Friday, June 20, 2014 - Saturday, June 21, 2014

Location:  Boston/Waltham, MA, USA

CONFERENCE UPDATE AND PHOTOS

We had an amazing trip to Boston this year for the Ohtahara Syndrome Conference and Family Gathering.  In total, nine families joined us for the event and we truly were blessed to have each and every one of them in attendance.  To say the children are an absolute delight, is an understatement by far.  The conference room on Friday was full of children- siblings playing together ( and seeing that there are other siblings out there that have a brother or sister with Ohtahara Syndrome) and the children cooing and babbling - or even yelling at us during the conference.  These are noises that are music to my ears.  We truly love and appreciate the laughter and joy of children; it just brings such comfort and happiness to the group!  Thank you families for keeping the children with us in the room, I loved their input! 

We had eight speakers for Friday lined up.  This meant most of the day was full for conference, but it was full of some wonderful information too.  We are currently working on uploading the videos to our YouTube page (for now you can view last year's conference videos).  We will share when they are uploaded and available for viewing.  For now I will share a few of the slides and photos, but stay tuned to the upcoming July newsletter, Ohtahara Syndrome Community Newsletter, for more info and updates. 

Thank you for the wonderful welcome Boston Children's Hospital!!


We had the great opportunity to tour the zebrafish lab while we were in Boston.  We were so happy to be able to see what the research efforts of the Boston Neurology Department and Epilepsy Genetics Program have been able to accomplish and where they are moving to.  The zebra fish lab is huge, however the zebrafish are quite small!  They have small stripes on them when they are full grown, giving them their name.  In the lab we did not see any zebrafish having seizures as they are not in the lab as of yet, however, we did get to see the other research that is going on for Muscular Dystrophy and skin tumors for example.  This is fascinating and gives us so much hope that at some point answers can be found for a treatment option for Ohtahara Syndrome!  Can you imagine that? Can you?!!  I can say that I will be crying tears of joy when that day happens and yes I say when because I know that this team has their heart in their work and are so dedicated to the families and children.  I don't know when, but I still have hope!!  On a side note, working with zebrafish enabled researchers to find a medication that may be effective in children with Dravet Syndrome.  Dravet Syndrome is another rare pediatric epilepsy.  This in itself brings me hope that it can be possible for our children with Ohtahara Syndrome.  Why not??  I have been praying for better treatment options since Aaron was diagnosed, four years now and I know there are families that have been praying for it much longer.  It seems with continued research and participation there might be an answer in their future.  Overall the zebrafish lab was so interesting to see and really made us hopeful and thankful to the team for continuing with Ohtahara Syndrome.  We are so grateful.




You may have  to enlarge this photo to view it clearly, however, a brief overview is of the differential diagnosis between EME, EIEE, and Infantile Spasms.  This distinguishes seizure type, EEG, etiology, and outcome for each diagnosis.  EME and Ohtahara Syndrome are very similar and may also be given interchangeably in a diagnosis.  Each one- not good.  When you see this data, you just know that something has to be done!  Something is being done, I will remind families and those just interested in rare disease or epilepsy; between our conference and nonprofit, the research team, especially all of us families, and the children - we are making strides in the right direction. 


This one may also have to be enlarged, but it is showing some of the genes that are associated with Ohtahara Syndrome or Early Onset Epileptic Encephalopathy (EOEE) Please note that EIEE and EOEE were used interchangeably throughout the conference and for good reason.  Research is finding links between the rare and early onset epilepsies such as Dravet and Ohtahara Syndrome, many have the same genetic mutations that link to both or a few possibilities.  This is showing the importance of expanding research and including many rare forms of early onset epilepsy as information could be shared and linked together. What could help one, may possibly benefit another. 


As a foundation, we had a very proud and exciting moment on Friday, where we surprised the research group with a donation!  We are so proud an honored to continue our support for their research into Ohtahara Syndrome and are so happy with their efforts and information they are bringing back to us and the families.  There are a few more families that have heard recently the genetic mutation that has been linked to their child's OS through their initial research.  Moving forward will then bring more answers and potentially treatment options.  This is why we continue our efforts for research with this team. Without their work, very little research would be ongoing with Ohtahara Syndrome and we are honored to have them dedicated to our children.  It is for the children!! 

One of our main objectives is research. To be able to continue to donate to this group and help in their further reseach endeavors, we are so proud and thank all that have contributed.  Thank you!!  It has been a blessing to be able to contribute to them and see where their work will lead.  Our cup runneth over!! :) 

Please stay tuned for more information on the conference in our upcoming July newsletter and check out our newsletters in the Newsletter Archives. 

Rare Disease Day Symposium 2014...

posted Feb 25, 2014, 8:41 PM by Aarons Ohtahara   [ updated Mar 4, 2014, 12:13 PM ]

We will be attending the Rare Disease Day Symposium this year on February 28th.  We are excited to be attending this for the third year.  We will have our table set up again to share information about Ohtahara Syndrome! We truly love attending these events; they are great ways for us to share information and definitely awareness about Ohtahara Syndrome with others.  With a rare disease, especially as we are told with Ohtahara Syndrome being one in a million, not a lot of information is available; we are working to change that!  Here are some photos of the past years of us attending the Rare Disease Symposium.

For more information on Rare Disease Day, please check out the following links...
1) Rare Disease Day  http://rarediseaseday.us/
2) Rare Disease Symposium  http://www.sanfordresearch.org/cords/newsevents/sanfordrarediseasesymposium/


Amy (Regional Representative) and Brianne (President) hosting our table at the Rare Disease Day Symposium 2013


Aaron's Ohtahara Foundation table; bringing awareness of Ohtahara Syndrome! Rare Disease Symposium 2013

Now adding our 2014 photos and information.  We had a great time in South Dakota again this year; three years and running strong!  Looking at our booths from the past, I think we have upgraded! I loved the signs we created initially and will continue to use them for other events, but we are very excited about the new signs we have for Aaron's Ohtahara.  They show our information and more importantly information on Ohtahara Syndrome. They are great pieces, that go well with our brochures and table themes of purple and showing off our wonderful children! 

This year we were able to speak with a handful or more of parents and medical professionals.  I loved walking around, looking at the other booths, and definitely seeing others grab our information and purple ribbons set out.  The rare disease symposium hosted by Sanford CoRDS is a wonderful awareness event.  One that we would like to continue to attend! Check out our photos and our upcoming March/April Newsletter for more information!


2014 booth upgrade :)


Our new sign and graphics for events, complete with interchangeable photos


Another view of our table


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