Cure HSPB8: a new patient advocacy group for people living with HSPB8 myopathy
Calabasas, California, United States – April 2024. Cure HSPB8, a new patient advocacy group, officially launches as a charitable project of Social and Environmental Entrepreneurs to support individuals and families affected by HSPB8 Myopathy, an ultrarare, adult-onset muscle-wasting condition. As the only charitable project dedicated to overcoming the challenges of this debilitating disease, Cure HSPB8 brings together a multidisciplinary team of patients, families, advocates, researchers, and healthcare professionals with one goal: to find a treatment and eventually a cure.
The overarching mission of Cure HSPB8 is to improve the lives of all people affected by HSPB8 Myopathy and their families. We do this by accelerating the drug development process, building a strong and empowered community and advocating for the community. Our goal is to find a treatment and a cure using state-of-the-art technologies and advances in science.
“After being diagnosed with an HSPB8 mutation in 2016, I dedicated years to collaborating with leading academic research organizations to deepen our understanding of the myopathy it causes. In the meantime though, my health has declined substantially. The list of maladies is quite lengthy, but it includes severe leg muscle weakness, dramatically lowered breathing capacity, and constant hip pain, among other issues. In 2023, I founded Cure HSPB8 to drive progress and advance solutions for those affected by this condition. While my health and quality of life have waned, my resolve to find a treatment has not – I vow to my dying breath that a treatment for HSPB8 Myopathy will be developed.”
Todd King, founder & HSPB8 myopathy patient
Cure HSPB8 invites patients, caregivers, researchers, and supporters to get involved:
- Join our global patient registry to advance research efforts
- Visit our website https://curehspb8.org/ for updates and resources
- Subscribe to our newsletter to stay informed and connected
- Follow us on social media using the buttons below
Together, we can drive change and create a future where HSPB8 Myopathy no longer defines lives.
CONTACT INFORMATION:
Cure HSPB8, a charitable project of Social and Environmental Entrepreneurs (SEE)
Dr. Ania Kordala
