By John Cannon
I never imagined that a simple decision to participate in a fundraising bike ride could have changed our lives so much. The New England Parkinson’s Ride is an extraordinary event. It is organized by a woman named Edna, in her mid 70's, to support her son who has Parkinson's disease (PD). Her son rode his bike in other fundraising events for many years so she felt it was only fitting to create a ride with Team Fox to support PD. The ride had 28 participants during the first year and it grew to over 200 during the 3rd year in 2010. Her son completes the 100 mile ride each year and he plans to do it again in 2011.
The bike ride was such an inspiring event that permanently touched us. I do a lot of bike riding and usually come home exhausted. Meeting people who ride 50 or 100 miles with PD is something that humbles you to say the least. It was so well planned and managed that you didn’t have to think about anything but riding and the loved ones you are riding for.
Then came the invitation from Team Fox to attend the annual awards banquet, and it is in New York City!!!! I only have two experiences in NY City in my “exciting” 48 years. One when I was too young to remember, and a second when my wife Maureen and I drove through Manhattan, got lost and had to find our way out. I do much better when I see cows and corn fields on the side of the roads.
This is a major event for us country folk!
Of course we toiled for days thinking about the best way to get there. On the day of the event, we decided the train out of New Haven is the option of choice. Now I have to confess that this is our first time on a train (not including the subway). It was a good choice, relaxing and uneventful. Once in the city, we were able to enjoy our first NY city cab ride. I loved it but that is probably because I am a NASCAR fan. Not sure that Maureen felt the same way. She had that seatbelt on tight and was holding on to anything that looked like a handle. The hotel was very nice until you look out the window. Let's just say that NY city is much better looking from the ground.
The Team Fox awards banquet was held in a facility called Guastavinos. It is built under the Queensboro Bridge and the arch of the stone bridge is inside the building. Really cool, and only in NY. I can only imagine the politics required to build that establishment.
The event started with a cocktail hour. Open bar of course. It worked out really well because we were able to meet up with the organizers of the ride and most of them were family so they knew each other. I must say that after about 20 minutes we felt like family. We also met up with a very nice woman who I happened to ride with throughout most of the event. We saw each other for a few minutes after the ride (and had a hard time recognizing each other without bike helmets) but we never exchanged any information. It was great to catch up again and now we are Facebook friends as I am sure we will be friends for many years to come.
The event moved upstairs for the banquet where we were seated at tables with family members and riders as well as representatives from Team Fox. One woman at the table is afflicted with PD and her smile was infectious all night. She rode with her husband and young child on a bike with three seats. I am pretty sure they rode 100 miles. What a special couple!
The formal program started with traditional presentations about how much Team Fox does for PD research. Team Fox is a branch of the Michael J Fox foundation. Team Fox is established for individuals who want to raise funds. Many people run in marathons for the team but they also have events like pancakes for Parkinson’s. The foundation has raised over $400 million for PD research and Team Fox is over $20 million with $4.4 million in 2010. You can watch this Video to learn more about Team Fox.
Next they showed a new film produced to show the faces of Parkinson’s. It was very touching. These types of films are so important because PD would be forgotten without the Michael J. Fox Foundation. I expect it will be on teamfox.org soon.
The highlight of the night was obviously Michael J. Fox speaking. He gave a very inspiring and appreciative talk. The man is amazing. He looks great and you can hear the passion in his voice. The excitement in the room is unbelievable when he enters. We hoped to meet him and came within inches however the timing just wasn’t right. I have to figure out a way for Maureen to meet him since he is the number one person in the world who she wants to meet. All she wants to do is say “Thank You” for everything that he has done. I am on a mission! Watch this video about the evening.
The service and food was amazing. I brought a beer to the table from the cocktail hour and the waiter asked what I was drinking. Anytime the glass was almost empty, another magically appeared. Even though I do not drink much, this was really, really cool!! Even better than having the bridge inside the building. It was also great to hear that the entire event was funded by Teva Pharmaceuticals. This means that the precious Team Fox research dollars are used where they are needed.
The evening ended with another taxi ride to see the Empire State building. April 8, 2011 was proclaimed the Michael J. Fox Foundation for Parkinson’s Research Day in New York City and they lit the Empire State building in orange in honor of the day. We just had to see it. Of course, we also made the taxi driver stop in the road so we could take pictures, however I can’t take credit for this picture since it was taken by a friend through his apartment window. It is much better than the shot I took from the hood of the cab considering all those glasses of beer that kept appearing at the table.
This whole experience has changed the both of us forever. Meeting all of the great people who are supporting the research is so inspiring but seeing the spirit in the people who are affected by PD is something that we will never forget. It’s like they have such an appreciation for each and every day that we take for granted. We also came away very confident that this disease can be cured thanks to the drive of Michael J. Fox and his entire organization. There is so much research and clinical trials happening because of his efforts that it has to be cured.
The generous contributions that we received for the ride in 2010 were amazing. Our original fund raising goal was $2,000. In the end we were over $9,000. We were not the real heroes. The late Bob Bell, Frank Marhefka, and Bill Schmidt were the real heroes. They were all such wonderful and honorable people that provided the inspiration for so many to come forward, some without even being asked. There were also many people who contributed in the names of others who have been affected by PD. We could not have raised a nickel if all these individuals weren't so loved and respected by so many.
Our deepest appreciation goes out to all of you who contributed. We are also very thankful to Edna and the Woods family for their dedication to finding a cure and for building such a first class event and we can’t forget Michael J. Fox and his entire organization for the amazing things they have done.
Together, we WILL make a difference.
I am planning to ride the 100 miles again this year and our 13 yr old daughter, Jacqueline, is planning to ride in the 30 mile event for “Grampy”. Maureen will also ride with her. They have new bikes and have been training hard. There will also be a rest stop dedicated to my late father-in-law, Bob Bell. This ride meant so much to him last year that he kept my event picture from the ride in his room to show all who entered. The special edition “New England Parkinson’s” shirt that I wore in the ride is now with him to eternity and I hope it will provide comfort for his soul and be a symbol of how much he has given to this world.
Thank you for taking the time to read this and please consider donating.
Now the Rest of the Story!!!!
All that you read above was the end of the story until I was contacted by my cousin Gail Nanof. She is the daughter of my uncle Frank Marhefka, mentioned above. She wanted to let me know that she was diagnosed with Parkinson’s Disease in July of 2010. She did not want to tell anyone because she didn’t want people to think differently about her or to feel bad for her, however after thinking about it for a few days, she made the heroic decision that she can do a lot more good by letting people know what is going on. She also decided to ride the in the Parkinson’s Ride. She was so excited to tell me that her husband Jim and their daughter Beth will join her in the 30 mile ride. Her son Chris will be in Florida so he can’t ride but he will certainly be there in spirit.
Gail started telling family and close friends and the support has been amazing. Many people have agreed to ride with us and help with raising funds. We decided to create a team and Family Ties was born. This name is very symbolic and describes what we are all about. We are family and friends coming together to make a difference by raising awareness for Parkinson’s, raising funds for this critical research, remembering those who lived with the disease and supporting great people like Gail who have Parkinson’s disease. Together we can all make a difference.
Gail is an amazing person who is full of life and determined to make a difference herself. She has been out riding her bike to train for the ride. Look at the following message that I received from her after she started riding:
“Just an FYI Had a great appt. today. She said I was actually doing fantastic and better than I was 5 months ago. Don't have to go back for 6 months. I swear it is the bike riding. Thanks:)”
You can only imagine how good I felt when I received this message. It is all from a simple decision to ride. I hope everyone who reads this story will make a similar decision and join us or contribute. You will be making a huge difference for many people and you can also say that you helped Michael J. Fox cure a disease when he accomplishes his goal!