On May 3, over 540 people rode their bikes in and around Philadelphia to raise money for rare disease research. In the process, the group of dedicated rare disease advocates raised over $1.4 million. Congenital Hyperinsulinism International (CHI) was one of 15 teams to participate in the race and the “Raring to Go for CHI” team raised a total of $56,534.00 for congenital hyperinsulinism research, including the matching funds provided by the University of Pennsylvania (Penn). The event was planned by The Penn Medicine Center for Orphan Disease Research and Therapy (CODRT), a new center at Penn focused on innovation and discovery in the field of rare disease research and therapy.
“Participating in the Million Dollar Bike ride was the most healing, exciting, and memorable experience so far on my journey through HI. Trekking through the beautiful hills of Philadelphia to raise funds for HI was powerful! Our team was an incredible group –bound together by our hope for a cure, and united in the effort to raise funds for HI research. I can’t wait to see our CHI team grow even stronger, and our HI research funds even bigger next year!” wrote Sarah Browne, HI mom and Chair of the CHI fundraising Advisory Board. Sarah flew all the way from Atlanta, Georgia to ride and raise funds for HI research. Her take on the experience was universally shared by the entire “Raring to go for CHI” team.
“I had a blast at the Million Dollar Bike Ride. It was a beautiful day in Philadelphia, and beautiful to be with so many people cycling to support rare disease research. I can’t wait to participate again next year!,” said Team Captain Leo Brown who made the trip down from Boston to lead the team, dedicating months to preparing for the ride and raising funds for the big day. Leo had such a good experience, he has signed on for another year as Captain. Leo has big plans for next year’s ride. While we had a wonderful team of impassioned riders and a great fundraising outcome, Leo hopes that next year even more people from the HI community and their friends and family will come out to ride with us and raise money for the cause.
“It was a beautiful day for a bike ride with a great group of people, doing what they could to raise awareness and money for HI. We were an enthusiastic and dedicated group of riders. We are hoping this will become a yearly tradition. We rode for those who couldn’t and recognized that we all have challenges but those with HI need more help than the rest of us. It was great to make new friends in our HI community, and I look forward to seeing them all again at our next event in August in NJ and in NY in November and beyond,” said Susan Becker, another top fundraiser for the ride, longtime friend of CHI, and coordinator of the PET Scan research program at Children’s Hospital of Philadelphia.
In addition to patient, patient families, and healthcare professionals, “Raring to Go for CHI” was joined by Beth Rada, Senior Director of Government Affairs for XOMA, and her family. We were truly a multi-stakeholder team! “It was a great honor to ride with such a dedicated group of people in support of building HI awareness. XOMA looks forward to future bike rides and events with the HI community as we work together towards developing new solutions for patients with HI,” Beth shared.
The impressions and opinions of the riders really say it all. The combination of riding for a cause so close to our hearts and the special camaraderie those of us touched by this condition developed for each other, over the course of the ride and the evening before, was truly memorable. And yet the friendships that developed and the day so stunningly perfect is not the whole story. The funds raised by the CHI community are also a major accomplishment and a meaningful contribution to future congenital hyperinsulinism research.
This summer there will be a request for proposals from CODRT and researchers all over the world will be able to apply for the funds we raised on May 3. CODRT will fully administer the grant. All administrative fees are being paid for by CODRT out of their own budget. The entire $56,534.00 will go to the congenital hyperinsulinism research project selected by the University of Pennsylvania team of medical experts.
The purpose of the CODRT/CHI Research Fund is to encourage innovative, pre-clinical or clinical studies designed to improve the diagnosis, therapy, or quality of life for those affected by congenital hyperinsulinism. The grant will be awarded to a researcher anywhere in the world, to initiate or augment a scientific, pre-clinical or clinical research study, the results of which could be used to obtain future funding from NIH, FDA or other funding agencies, or to attract a corporate sponsor. Evaluation of proposals will include careful consideration of value to the patient population, protocol design, objectiveness of parameters measured, and statistical evaluation proposed.” 2014 was a fantastic inaugural year for the ride and 2015 will be even bigger and better. As soon as we know the date, we’ll share it and urge you to save the date!
