We are proud to announce A New Hope | Well-Being in Rare, a new initiative at Cure VCP Disease where we will be offering access to genetic counseling and testing, educational programs, and mental health support for young adults, made possible through a grant from Alexion Charitable Foundation.
What is the need for A New Hope | Well-Being in Rare?
VCP disease impacts the whole family and can introduce a number of challenges. These challenges include barriers to genetic diagnosis, the familial burden of caring for a parent or family member, and the psychological burden of planning for a potential future with a disability.
What are the goals of A New Hope | Well-Being in Rare?
A New Hope | Well Being in Rare will provide informed genetic testing resources to family members, while counseling, education, peer support groups, and more will be offered specifically to teens and young adults who are potential caregivers and future patients.
Who can participate in the initiative?
Family members of patients with VCP disease, specifically teens and young adults. While support and discussion groups will be limited to individuals between the ages of 18-29, genetic testing and counseling are available for all ages.
Why is genetic testing important?
Genetic testing can provide participants with more information about their own health and future while also supporting research advancement. Through A New Hope | Well Being in Rare, not only do we aim to provide access to genetic testing resources, but we also plan to provide access to genetic counseling.
Who will be conducting genetic testing?
We will work with a private genetic counseling company who has designed a special program for Cure VCP Disease.
How much does it cost to participate?
There is no cost to participate due to a grant from the Alexion Charitable Foundation
How can we get involved?
Please fill out the interest form here and someone will be in touch to provide next steps.
What is the duration of the program?
The program is currently scheduled to run from March - December 2025, however we hope to extend it pending additional grant funding.
Will my information be shared?
No. Our top priority is to protect the privacy of all participants whether you are participating in the support groups or looking to receive genetic testing and/or counseling.
Meet Ashley:
Ashley Thompson, MS, CGC, is a genetic counselor who is dedicated to supporting rare disease communities. She brings years of experience in research and advocacy to lead the A New Hope | Wellbeing in Rare initiative, helping young adults impacted by VCP disease access education, mental health support, and genetic counseling.
“Navigating a rare disease diagnosis or caregiving journey can feel isolating, but the right resources can make all the difference. This initiative is about giving young adults the knowledge, support, and community they need to feel empowered and prepared for the future.”
Meet Tammy:
Tammy channels her expertise as a social worker to serve our community. She leads the Care Partner Happy Hour support group, providing a safe space for families to share, learn, and find solace. She will assist in leading the peer support groups with A New Hope | Well-Being in Rare.
Tammy captures the essence of why she volunteers with her heartfelt words:
"Why am I involved with Cure VCP Disease? I receive the answer to that question a million times every day, every week, every month, and every year. Every time I move my body easily, I am grateful—and aware that my brother, Tom, does not feel this strength. My why is because I can, when so many can’t."