Raising More Than Money: The Importance of Fundraising Events for the Fabry Disease Community
Part 1 of 2 It can be a confusing, emotional, and isolating experience when someone is diagnosed with a rare disease, including for their family members and loved ones. While an accurate diagnosis may bring some sense of relief by identifying the cause of symptoms – something that can take many months or even years in the rare disease community – it also often introduces many questions and challenges and is just the start of a lifelong journey. Given the very nature of rare diseases, there is often limited information and support available for patients, their families and caregivers who are also impacted. As a result, many patient advocacy groups have been established to serve as a support system for people affected by a certain rare disease, including helpful disease information, lifestyle tips, personal testimonials, financial support services, and support for clinical research. As the co-founder of an advocacy group in Fabry disease, called the Fabry Support & Information Group (FSIG), I have learned over the years that these types of services are critical for people impacted by rare diseases. It can make people feel like they have a lifeline and are not alone. Fundraising events have also become a popular way to raise money for these types of organizations to help expand their services and reach. Many of these events have grown into something more important than simply raising money because they are opportunities for people to share their stories and educate their communities about their disease.
As part of the fifth generation of my family to live with Fabry disease, I know the importance and impact of having a support system in place. My family was able to discuss our experiences and challenges regularly with each other. Before treatments were available, we also shared tips and tricks for managing symptoms, such as taking cold showers, avoiding extreme temperatures, and taking anti-seizure and pain medications when needed. Symptoms of Fabry disease can include an inability to sweat, gastrointestinal difficulties, kidney damage, heart abnormalities, strokes and chronic pain. Eventually, my symptoms became so crippling that I could not exercise, play sports or carry on my family’s farming business due to the physical demands. The effects of Fabry disease, like many other rare diseases, are devastating, but it was comforting to know that others in my family could listen to me and understand my experiences.
I cannot imagine what this is like for others who do not have that support system in their lives. Others deserve to feel the sense of camaraderie that I had with my relatives. In 1996, I co-founded FSIG as a national source of information and resources for people affected by Fabry disease.
FSIG was initially created as a kitchen table support group, but I’m proud to say it has grown into a leading U.S. Fabry disease advocacy organization. From the beginning, our mission has been to build broader awareness of Fabry disease and the significant need for access to effective treatment options. It is incredible that there are now several different approved treatments, with one recently approved in both the U.S. and European Union in May 2023. We are also focused on creating a safe and open community where people can connect to discuss any challenges they are facing or share information that might help others. We work hard to provide educational materials about how to best manage Fabry disease and support from a physical, emotional or financial perspective. We host in-person and virtual gatherings across the country to help foster connection among patients and families, and these events are often the most rewarding.
Since FSIG was founded more than 20 years ago, we have participated in and hosted many events that I am proud of, but the one closest to my heart is our Annual FSIG Fun Run & Walk. Every April, we recognize Fabry Disease Awareness Month with this event where people are encouraged to take a one mile walk or jog in their neighborhood and share photos online using the hashtag #RunningForFabry. Although this event takes place virtually to allow anyone across the country to participate, it has been extremely powerful and rewarding. This year marked our 10th annual event and involved almost 100 participants and raised nearly $10,000. The money raised from the Fun Run & Walk supports FSIG’s “Rapid Assistance Fund supporT” (RAFT) program, which provides short-term financial assistance to patients requiring transportation to Fabry disease support meetings, childcare during treatments or doctor appointments, diagnostic and genetic testing, communication devices and cooling vests.
The financial resources generated by the Fun Run & Walk are very important to the Fabry community, but the broader impact of the event is invaluable. Participants can use the event as an opportunity to in