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50/50: John Paul Jr. and His Battle with Huntington’s Disease
50/50: John Paul Jr. and His Battle with Huntington’s Disease
By Sylvia Wilkinson
Initially described as “hopeless” by a professional driving instructor, John Paul Jr.’s driving career began in 1979 driving Formula Fords. The following year he joined his controversial father’s racing team as co-driver in the IMSA series. After only two years of competing, John Paul Jr. started the 1982 season with back-to-back wins
at Daytona and Sebring, and by the end of the season, he had clinched the championship at the age of 22, becoming
IMSA’s youngest champion. He won the Michigan 500 CART race in 1983, followed by a second-place finish at Le Mans in 1984. Additionally, John Paul Jr competed in the Indianapolis 500 seven times. Symptoms of the neurodegenerative disorder Huntington’s disease began to appear at age 39, and John Paul Jr. began his fight against this deadly disease. This book chronicles John Paul Jr.’s life story and his continuing battle with Huntington’s. All profits from “50/50 -The Story of Champion Race Car Driver John Paul Jr and His Battle with Huntington’s Disease” will go to John Paul Jr.’s funds to fight Huntington’s disease, (all proceeds go to UCLA Neurology, Dr. Perlman’s research), please order it from www.JohnMortonRacing.net/5050. You will need to fill out a form online, and Sylvia will reach out to you to complete the order.
50/50 Fundraising Dinner
for John Paul Jr Huntington’s Disease Research
On August 29, 2019, a “50/50 Dinner” was held at an exclusive facility in Essex, MA for the John Paul Jr. Huntington’s Disease Foundation. The purpose of this event was to raise much needed funds to further research towards the cure for Huntington’s Disease (HD). This was the result of a brainstorm shared between Peter Bourassa and Paul Russell after reading Sylvia Wilkinson’s book “50/50 -The Story of Champion Race Car Driver John Paul Jr and His Battle with Huntington’s Disease.” Peter enlisted the aid of racing legends Lyn St James and Tommy Kendall and together, this vision became a reality.
It was an unforgettable evening of celebrity racers, rare automobiles, generous and exclusive items for silent auction, heart-warming videos and priceless conversation / stories.
This exclusive fund-raising dinner was by invitation, and thanks to the generosity of those who became a part of this evening, we are happy to announce that John Paul Jr. Huntington’s Disease Foundation was able to present a check in the amount of $16,200 to the UCLA Department of Neurology, to further Dr. Susan Perlman’s research towards the cure to end this disease along with the related diseases Alzheimer’s and Parkinson’s.
Dr. Susan Perlman is the Director of the UCLA Ataxia Center and HD Center of Excellence. John would not be in the “holding pattern”, (as he refers to it), if it were not for Dr. Perlman’s relentless dedication and determination to end this disease. Her efforts have given John hope that he may indeed live to see the cure.
Words cannot express our gratitude and appreciation to the legends of motorsports who came together for this cause. Lyn St James, Tommy Kendall, Justin Bell, Derek Bell, Bob Varsha, Judy Stropus, David Hobbs, Derek Daly, Sylvia Wilkinson, Kevin Buckler (AdobeRoadWines.com the wine was awesome) Boris Said, Paul Russell, Burt Levy, Darlene Gray, Ardy Arani, Paul Chenard are just some of the people that attended to support the event and make it an unforgettable night. The evening was filled with laughter (and some tears) as notables shared their stories about John.
“I’m blown away by what incredible friends I have and what they did to help Dr. Perlman find a cure for Huntington’s, Parkinson’s and Alzheimers. You guys all give me (and the others) hope. The cure can happen. I believe it. I could never say thank you enough. Love John”.
The event, the donations - monetary and in the form of auction items, raised much needed research dollars. These efforts also spread awareness of Huntington’s Disease, and gives John Paul Jr., and others afflicted with these horrific neurological diseases, the love and encouragement to keep fighting.
Additional fundraisers are in the works for Los Angeles 2021 - “50/50 in 2021”. We hope that you will all continue to spread the word about Huntington’s Disease and support John’s efforts in finding a cure. To stay in touch follow John on his Facebook page at https://www.facebook.com/JPJRacing/ or the foundation website at https://www.JohnPaulJrhd.com
Below is a letter from Dr Susan Perlman :
Dear Darlene and Laura,
Words cannot express my sincere gratitude to you both and John for your incredible philanthropic support and friendship over the years. I hope you know that my one goal in life is to discover answers for the HD community as quickly as possible, which requires partners like you to fuel the research activity.
The funds donated to support Huntington’s disease (HD) clinical trials at UCLA make an immediate impact to accelerate the pace of our research. In other words, your donation helps discover promising drugs & bring them to patients in clinic faster.
UCLA offers the largest Huntington’s disease clinic west of the Mississippi River. This is important, because having access to a large population of patients who are eager to participate in research helps advance clinical trials.
My team relies upon donations from generous people to fuel the research activity. John’s philanthropic efforts helped UCLA complete four studies last year. We are also continuing to progress with two additional studies, and will soon launch 2 new drug trials. In addition, a multi-center biomarker study involving HD centers on the west coast will be starting.
Thank you for helping people living with HD and their loved ones find better answers.
Sincerely,
Dr. Susan Perlman, M.D.
Clinical Professor of Neurology
Director, Ataxia Center and HD Center of Excellence
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John is part of a clinical study program at UCLA. His major concern and hope is to help with the advancement of finding a cure for Huntington's Disease. Not only could this help him, but more importantly it will help the future of his children and other children in the future. Huntington's Disease has some similarities with Parkinson's disease, Alzheimer's disease, and other neurodegenerative disorders. Huntington's disease is unique, however, in that the gene that causes the disease has been identified. This makes research on Huntington's disease even more important in the field of nuerological disorders as genetic medicine becomes more and more of a reality. Developing better treatments and finding a cure for Huntington's disease will be vital for improving treatments and curing other conditions too, like Parkinson's and Alzheimer's disease.
Send donations to
John Paul Jr Huntington's Disease Foundation
@ 6526 S. Kanner Hwy. PMB 284
Stuart, Florida 34997