Yesterday, Congenital Hyperinsulinism International (CHI) took part in The Million Dollar Bike Ride for Orphan Disease Research for the fifth consecutive year. Sunday, May 20, 2018 was another magical day! For those new to the event, it’s the day of the year when people living with rare diseases and their communities come together in Philadelphia for a bike ride. There are short and long rides, but all who are riding are raising awareness of rare diseases and funds for pilot projects that may lead to new treatments and cures.
Every year, CHI has a small but mighty team. Leo Brown has been the Raring to Go for CHI Team Captain for 5 years and has done a fantastic job of getting us to over $300,000 raised for hyperinsulinism research. Leo was with us again yesterday and had a great cheering squad of family and friends in Philly.
This year’s team included Dr. Charles A. Stanley, Founder of the Congenital Hyperinsulinism Center at CHOP. Dr. Stanley is the only person to ride all 5 years! I had hoped to share that distinction with him, but a sore knee kept me from riding this year. Dr. Stanley was joined by an enthusiastic crew of children and grandchildren on the ride.
Dr. Lisa States not only heads up the PET Scan hyperinsulinism study at CHOP that leads to cures for many babies and children with focal HI, she’s a dynamo on her bike, and rode 34 miles yesterday along with her husband.
This year, Dr. Amanda Ackermann, an attending physician and HI specialist at CHOP, joined the ride. She rode 72 miles! We are so impressed with her dedication to the cause.
Dr. Changhong Li, a research scientist at CHOP focusing on fuel metabolism in islets and regulation of insulin secretion in congenital hyperinsulinism also joined the team for the second year in a row.
My husband Mark not only rode the 34-mile course for the 4th year in a row, he drove 400 miles the day before so that our son Ben who was in Vermont, finishing up his junior year of college, could be “reunited for a cure” at the Million Dollar Bike Ride. Ben has not been able to master riding a bike because of challenges resulting from prolonged hypoglycemia due to HI, but Ben is “Raring to Go for CHI,” and he worked the CHI table at the event with Clinical Research Nurse Coordinator at CHOP, Susan Becker, and CHI Board Member, Sheila Bose — two of CHI’s most dedicated supporters and volunteers.
Chris Wilson, Director of the Orphan Disease Center at Penn Medicine, shared with the crowd that since the ride’s inception, over 6 million dollars has been raised for Rare Disease Research. Pretty Amazing!
Since we know that not everyone in our community can make it to Philadelphia, we have created an opportunity to create remote fundraising Crowdrise teams. There are currently five teams and there’s still time to create more: https://www.crowdrise.com/RaringtoGoforCHI2018. All the funds raised by these teams will contribute to the 2018 Raring to Go for CHI research award, and the funds raised by these teams will also be matched by the University of Pennsylvania. Funds can be donated to this cause through June 15, 2018. Choose any team you like or start your own! You can also donate on the CHI website for the cause: https://congenitalhi.org/donate/: https://congenitalhi.org/donate/. We are beyond grateful to all who have contributed to this year’s research funding cycle either by donating directly to this event or through any other donations to CHI.
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