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

March 5, 2018 Dr. Perlman's Latest Updates for John Paul Jr. 

The UCLA Huntington’s Disease Center of Excellence continues to be the largest clinical research center for Huntington’s Disease west of the Mississippi River. Under the leadership of Susan Perlman, M.D., they provide consultation, clinical care, and clinical research opportunities to over 200 patients and families living with HD. They continue to collaborate with an international research consortium for HD in the investigation of the natural history of HD and in the development of new biomarkers to track disease progression and improvement. They have worked with a national consortium on better ways to support the caregivers. This past year, they completed two trials of new drugs for HD and are now in the middle of a third trial. The basic research lab is exploring a new possible disease modifying drug. They are currently working with two companies that have neuroprotective drugs that could be tried in HD. They are on the threshold of trials for drugs that could block the HD gene and make HD a treatable disease.

 

Dr. Perlman and her team cannot thank John Paul, Jr., enough for his advocacy on behalf of the HD community. John is an incredible person who inspired a movement worldwide to raise awareness and funds for Huntington’s disease research.

We are  Involved in two new clinical drug trials that are translating new drug development into human use

•         Two additional clinical drug trials to launch later this summer which will again involve application new drugs to HD patients

•         In negotiations for two additional clinical drug trials of novel new drugs that might be neuroprotective

•         Continuing to collaborate with a national research consortium for HD in the investigation of the natural history of HD and in the development of new biomarkers to track disease progression and improvement

SEBRING 2013 HSR FINALE BENEFITS UCLA HUNTINGTON'S DISEASE RESEARCH
IN HONOR OF JOHN PAUL JR. DECEMBER-2013

The Department of Neurology, David Geffen School of Medicine at UCLA sincerely thanks the drivers, fans, and volunteers at the HSR event who came together in support of Huntington’s disease (HD) research. More than $30,000 in gifts (and counting) have been made to the John Paul Jr. Huntington Disease Fund.

 

Drs. Susan Perlman and Yvette Bordelon are leading the way in HD research in the Department of Neurology.

 

HD research progress:

 

  • Beginning two new clinical drug trials that are translating new drug development into human use

 

  • Preparing a third clinical drug trial to launch this the spring which will again involve application of a new drug to HD patients

 

  • In negotiations for a fourth clinical drug trial of a novel new drug that might be neuroprotective

 

  • Continuing to collaborate with a national research consortium for HD in the investigation of the natural history of HD and in the development of new biomarkers to track disease progression and improvement

 

Thank you for helping us “drive” our research forward in the race to find better answers for HD patients and their families.

Historic SportsCar Racing offers fans a chance to watch classic cars compete at Sebring International Raceway today and Sunday. 

Special to Highlands Today 

Published: December 7, 2013

      Seven champion race-car drivers and one rock star racer will compete in a Porsche 935 JLP HD1 on Sunday to help raise funds and awareness for Huntington's Disease.

      The 4-hour endurance event at the famed 3.7-mile Sebring International Speedway is sanctioned by Historic Sportscar Racing Ltd.

      The race has internationally-acclaimed drivers Rob Dyson, John Fergus, Hurley Haywood, Roger Mandeville, Jim Pace, Brian Redman and Dorsey Schroeder.

     Fans and supporters around the world are encouraged to visit http://ucla.in/171Fd00 (go to "Please Direct My Fund to..." and scroll down to "John Paul Jr.") where donations will be accepted in the name of the event and former racing champion John Paul Jr., who suffers from the disease.

     John Paul Jr. is the youngest champion in IMSA GT Series history, and has won races at the 24 Hours of Daytona, in CART and the IRL.

      In 1982, at age 22, he became the youngest winner of the prestigious 12 Hours of Sebring. Other former race drivers are known to suffer from Parkinson's, Multiple Sclerosis and Alzheimer's - all related to Huntington's. Paul Jr. is expected to join the Saturday evening reception through a Skype hook-up, along with other West Coast-based race-car drivers lending their support.

     "This is such a debilitating disease, which has taken its toll on so many of our friends and others throughout the world," said Redman, a three-time U.S. F5000 champion (1974-76), and the 1981 IMSA Camel GT champion, who is coordinating the fund-raising effort. "This is a great opportunity for many of us in the racing community to give back and help support a great cause."

     The funds raised will benefit HD research by the Department of Neurology, David Geffen School of Medicine at UCLA. Huntington's is an inherited and fatal degenerative disease that progressively robs patients of the ability to think, judge appropriately, control their emotions and perform coordinated tasks.

     The proceeds will also benefit the Huntington Disease Society of America's mission to improve the lives of people affected by HD and their families by supporting the UCLA Center of Excellence.

According to UCLA, it is an exciting time in HD research, and UCLA Neurology is confident that many groundbreaking discoveries are within reach. The understanding of the brain processes that are affected by the mutant huntingtin protein has increased dramatically over the past decade, and UCLA specialists are now poised to begin treatments that may have a dramatic impact on delaying the onset and slowing the progression of this disease.

     "We thank Historic Sportscar Racing, Brian Redman, and all of the participants in this event to raise awareness and support for HD research. We extend our deepest appreciation to John Paul Jr., for his tireless drive and passion to improve the lives of HD patients and move our research forward," said Susan Perlman, M.D., Director, UCLA Huntington's Disease Center and Clinical Professor, UCLA Department of Neurology.

     The JLP HD1 encompasses all the great 935s that John Paul Jr. raced in the '80s and beyond. The eight-driver team will compete against sports racers from the '50s, '60s and '70s, as well as GTP/Group C cars of the '80s and later, including Courage, Pescarolo and the Audi R8.

     "I'm proud and honored to compete in this 4-hour enduro on behalf of the UCLA Huntington's Disease Center," said Haywood, a two-time Sebring 12-Hour and five-time Daytona 24-hour champion. "John Paul Jr. was a great competitor whom I had the privilege of racing against in the early IMSA days, and giving back to help in the research to eliminate this disease is an important goal."

When she's not working on research for HD, Dyna Shirasaki is lead singer for the band

Thund Her Struck and Hammer of the Broads.

We hope to see them perform at a future fundraising event.

PRESS RELEASE From Mauro Borella

Castell'Arquato Italy… The "Vernasca Silver Flag Concours

d'Elegance" during the weekend of June 28-30, JLP-4,

entered under the "Ecurie Tycoonaire" flag, has been one of

the central attractions at the "Vernasca Silver Flag" in

Castell'Arquato Italy. The "Vernasca Silver Flag" is

a dynamic "Concours d'Elegance" for race cars, that two times a day were able to run on a closed road course that once was the site of a famous hill climb race. The format of the event is much similar to the "Festival of Speed" in Goodwood, with rare historic cars arriving from all over the world. Well apart from being surprisingly able to go up the hill without any particular problem despite the tight corners and the Daytona-geared gearbox with blocked differential, JLP-4 has been awarded by the famous British auction house Coys with the prestigious and much sought-after "Spirit of Motoring" trophy. JLP-4 also won the special prize offered by Porsche for the most prestigious racing Porsche present at the event, despite the participation of other important cars like 907, 906, a Porsche 934 and the formerly owned Steve McQueen's Porsche 908. During the event the car was displayed and a lot of people asked about the JLP-HD Foundation project.