Perseverance on the Trail and in Living with a Rare Disease: Connecting Vermont Rare and IgG4ward! through Community and Hope.
Jack Bailey is both the proud father of a thirteen-year-old son, Shane, and a dedicated gravel cyclist. Shane lives with a rare genetic disorder known as Cardio-Facio-Cutaneous Syndrome (CFC), a developmental syndrome. Thus, when Jack first envisioned the Vermont Rare Gravel Bike Ride, it was more than just a passion project about his avocation. The ride, inspired by his own experience navigating the complexities of his son’s journey, was a way to shine light on the strength, resilience and perseverance of the rare disease community.
Jack’s initial inspiration came from a blend of gravel cycling events and rare disease advocacy efforts. “I suppose it was a combination between ‘The Million Dollar Bike Ride’(MDBR) and the Vermont Overland that inspired me,” Jack explained. The MDBR, hosted by the Orphan Disease Center at UPENN, raises money for rare disease research, while the Vermont Overland is a popular gravel race among this community. “My first idea was to bring an awesome gravel ride to our Southern Vermont community, while also raising awareness about rare diseases like Shane’s.”
As Jack participated in gravel rides, he began to notice parallels between the unpredictable nature of gravel riding and living with a rare disease. “It’s hard,” he said, “There are so many unexpected twists and turns—not only on the dirt roads but also with your bike, your fitness and how you are feeling in the moment. And once you are 20, 40, 60 miles in there is no place to throw in the towel!”
This statement from Jack struck me, particularly when I think about my husband, Andrew, who lives with IgG4-RD. This year Andrew and I participated in the Vermont Rare Gravel Ride, for the first time. Just a week before the ride, Andy had infusion treatment for his IgG4-related disease. Although he knew he was not feeling his best, he still pushed through the 50-mile course. Much like his journey with IgG4-RD, Andy took on the ups and downs with determination, using each climb as a reminder of his resilience. For him, cycling is not just physical exercise, it is a way to prove to himself that he can still persevere, no matter the obstacles thrown his way.
The Vermont Rare Gravel Bike Ride is a way to bring people together and find connection and support within community. “Over the years, I have met so many incredible people in the rare disease community,” Jack reflected. At this year’s ride, he even discovered that Tanya Wolff, a gravel enthusiast, had done genetic research on a category of diseases – RASopathies - that includes Shane’s condition.
The ride has grown into a gathering point for people from all over the East Coast as well as other parts of the country. As Jack described, “the perseverance of the riders parallels the perseverance of individuals living with rare diseases.”
Andrew and I were deeply moved seeing a group of riders, some of whom have never been personally impacted by a rare disease, come together for this cause. It helped to remind us that while rare diseases may not affect the majority, they unite entire communities in a powerful way. The ride helped to make Andy and me feel less alone, more hopeful and excited to build upon our own IgG4-RD community. It is events like these that show how combining forces across different rare diseases can amplify all of our voices. No matter how rare the disease, everyone deserves to be heard and cared for.
When asked about the role of community support for those affected by rare diseases, Jack offered a thoughtful response: “Rare diseases are rare—that is the challenge,” he said. “Most people don’t know much about them because they are not mainstream. But rare diseases aren’t really that different from any other disease or sickness. My advice? Try not to be judgmental, help where you can and just be a good person.”
Jack’s words may certainly resonate with anyone connected to the rare disease community. Support is not about having full understanding about the intricacies of each disease. Rather, it is about being present and offering kindness, whether you are part of a family impacted by a rare disease or a person who wants to make difference.
As Vermont Rare has grown, it has expanded its mission beyond awareness and now provides direct support to families in need. “We have dedicated funds to help families pay hospital stays that would otherwise be a burden and for travel expenses to disease-related conferences.”
In addition to financial support, Vermont Rare collaborates with organizations like Bart Adaptive, Vermont Family Network and local children’s hospitals. These efforts show how the ride’s impact goes beyond raising awareness: it is about practical support for the families dealing with the complexities of rare disease such as Shane’s CFC and Andy’s IgG4-RD.
Through his passion for gravel riding, Jack has built more than another fun cycling event—he has created a platform where people can come together, share their strength and draw parallels between the challenges of the trail and the rare disease journey.
“It is tough, it is unpredictable, but we keep going.” Jack said, which is a statement that applies both to cycling and life.
This ride also reinforced the importance of perseverance for me personally, as I watched my husband tackle both the physical and mental challenges of a long-distance ride, just as he does in his journey with IgG4-RD. The sense of community—of riders coming together for a cause that affects so few but is so powerful—made us both feel seen and supported.
Andrew and I continue to witness the power of community, not just in our own rare disease space but across all rare disease communities. Whether it is through Vermont Rare or the IgG4ward! Foundation, events like these bring people together, amplifying voices and showing that no matter how rare the disease, everyone deserves the same care.
This event made us even more excited about The JAM which will serve as an opportunity for our community to unite, raise awareness and provide valuable education. In a similar way that Vermont Rare Gravel Bike Ride brings together a diverse group of cyclists, The JAM aims to bring together a diverse group of patients, caregivers and healthcare professionals dedicated to improving the lives of those affected by IgG4-RD. It is through these gatherings that we strengthen our bonds, share our stories and continue the journey forward, together.
Thank you to Jack, Marybeth and Shane – Vermont Rare, for reminding us all that as we continue to build and strengthen the rare disease communities, we never ride alone.
