As a patient-led research organization, we at Cure VCP Disease celebrate that every one of the enormous strides made in VCP research, awareness, and patient support is because of the commitment and dedication of our patient community
Because of VCP disease’s hereditary nature, families across generations are impacted and in need of support in various ways. But, together, we are supporting each other. We’re honored to share the story of an extraordinary family whose courage, determination, and compassion inspire us all.
Tom’s Story: Facing VCP Disease with Determination
Living with VCP disease comes with challenges that test resilience, but Tom’s approach is one of unwavering hope and purpose. He’s not just living with VCP disease; he’s actively fighting back for future generations.
“Living with VCP disease can feel like an uphill battle, but it’s a fight worth fighting,” Tom reflects. “I’m driven by the hope that our collective efforts will lead to a cure. Every conversation I have at events like the Mobility Expo is another step forward in making VCP disease known and building a stronger support network.”
Tom’s optimism is contagious. His ability to channel his experience into meaningful action helps drive awareness that fuels progress. He’s not just a patient—he’s a critical part of the movement for change. At the recent MO Better Foundation’s Mobility Expo in St. Louis, Tom took the stage—not literally, but figuratively—to represent Cure VCP Disease. His goal? To connect with others, share his story, and ensure that this rare condition gains the visibility it deserves.
Family Support: The Power of Coming Together
Tom’s journey isn’t one he walks alone. His brother Tim, and sister-in-law Kris, and his sister Tammy have stepped up in remarkable ways to support him. It was through their efforts that Tom connected with the MO Better Foundation, paving the way for his impactful participation in the Mobility Expo. The DeWald family embodies the power of family coming together, planting seeds of awareness that grow into life-changing opportunities, demonstrating how a unified family effort can amplify the impact and inspire others to join the mission. Whether it’s reaching out to organizations, fostering connections, or simply being present, their actions remind us that together, we can amplify our impact and create meaningful change.
Tammy’s Story: A Sister’s Love and Advocacy
For Tammy, supporting Tom isn’t just a family responsibility; it’s a deeply personal mission that shapes her everyday life. As a social worker, Tammy uses her professional expertise to guide and uplift others in the Cure VCP Disease community. Leading the Care Partner Happy Hour support group, she provides a vital space where families can connect, share, and find strength in their collective journey.
Her motivation to give back is rooted in her experiences with Tom, as she movingly explains in her own words:
"Why am I involved with Cure VCP Disease? I receive the answer to that question of myself a million times every day, every week, every month, and every year. Every time I move my body easily and every time I move my sore body after a good workout, I am grateful for what I have and aware that my brother, Tom, does not get to feel this strength from his body. Every time I think about scheduling a medical appointment, think about insurance, medical equipment, or growing older, I’m aware of the financial and personal burden these seemingly commonalities have on Tom and others with VCP disease. Every time I think about the holidays and hosting family and friends in an environment that allows a power wheelchair in the door so we all truly can gather, that is my why. Understanding the difficult role of family, friends, and loved ones who often feel powerless against a horrible disease and having the professional clinical background to help validate those feelings, that is my why. My why is because even when it’s hard or I don’t want to, my body can do what I need it to and for someone with VCP disease, their body can’t. That’s why a million times every day, every week, every month and every year. My why is because I can, when so many can’t."
Together, the DeWald embodies the resilience, love, and hope that define the spirit of community. Their story shares the intricacies of how different members of each family are impacted as well as how they go on to make an impact for others. While Tom’s work drives awareness and visibility, Tammy ensures that families and care partners have the support they need to face each day.
Looking Toward the Future
Tammy is joining Cure VCP Disease in yet another program to support patient families now and for future generations. Through the support of Alexion Charitable Foundation and the help of professionals like Tammy, we are proud to launch New Hope | Well Being in Rare. This new initiative aims to create a mental health and education program to support teenagers and young adults who are potential caregivers and future patients in the rare autosomal dominant disease space. Participants will have access to genetic testing, counseling services as well as other resources. Our goal is to provide essential support and preparation for participants as they make decisions about their future career, personal health, family planning, and care needs.
For more information about A New Hope | Well-Being in Rare visit our blog: