It was 100 degrees Fahrenheit when we arrived in Philadelphia on Friday evening to be a part of the Million Dollar Bike Ride. Early Saturday morning, when we gathered for the ride, it was somewhat cooler, but the morning still sizzled with expectation and excitement. Through early morning bleary eyes, the Team CHIbra riders are always a welcome sight, and it was wonderful to greet and connect with many of the riders who return year after year, as well as the riders participating for the first time.
The Million Dollar Bike Ride has raised millions of dollars for rare disease research since rare disease communities participated in the inaugural ride in 2014. Congenital Hyperinsulinism International (CHI) has had a team each and every year, even through the pandemic years when our teams were virtual. Through these rides and its generous supporters, CHI has raised nearly a million dollars.
In this way, the bike ride has enabled many extremely important research projects spanning basic scientific research, pilot clinical trials, and the expansion of observational and natural history studies.
As many of you know, since 2020, CHI has gathered many of the leading world experts, together with seasoned hyperinsulinism patient and parent advocates, to create and act on a prioritized research agenda as part of the Collaborative Research Network. This year’s funding opportunity will be awarded to the researchers who best address the most important research needs in the community. Research topics that fit the agenda include new and better treatments, earlier diagnosis, improvements in glucose monitoring, improved quality of life, and projects that track the experience of living with HI to inform researchers focused on new treatments and better diagnostics.
It may seem like an oxymoron, but I actually didn’t ride a bike at the Million Dollar Bike Ride. This year, I walked in the Million Dollar Mile! This enabled our son Benjamin to get into the act with my husband, Mark, and me. All these years, it has been somewhat ironic and bittersweet that Ben, who was born with congenital hyperinsulinism, was not able to participate in the ride. For Ben, a consequence of having hyperinsulinism is not being able to ride a bike.
The walk was a blast. Just a quick mile through the streets of Philadelphia near the University of Pennsylvania, home to the Orphan Disease Center that sponsors the ride. Many people affected by rare diseases move differently and do not have the ability to ride a bike. It was with great solidarity that our family joined our larger rare disease family on this epic but short walk under the bluest sky.
”It was nice to walk and talk with people and walk around the City. Thank you to those who could show their support.”
–Ben Raskin-Gross
Mark, Ben, and I were joined by one of the bedrocks of the CHOP Hyperinsulinism Center, Heather McKnight. Before finishing her training to become a clinician as a nurse practitioner, Heather was actually a floor nurse at CHOP when Ben was born. Our family’s relationship with Heather spans 30 years, and in this time period, there have been many important research discoveries.
Some of the most important research discoveries that translate into improvements in care include a better way to image the pancreas (FDOPA scan), a surgical cure for focal hyperinsulinism, continuous glucose monitoring, many new discoveries of newly identified genes that cause hyperinsulinism, research protocols to find the best path to population-level screening, and many quality-of-life topics through the HI Global Registry.
Some of the pilot grants that have been given through this program still have the potential to lead to a new treatment.
So it is with great optimism that stems from the awesome insights of the research community and the extraordinary generosity of CHI supporters, that I can say the future will include a lessening of the burden of living with a condition that has been both hard to diagnose and treat. And there is still time to get into the act of giving! You can continue to support the wonderful cause of the Million Dollar Bike Ride by June 30th of this year.
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