Updated: Jul 31
In preparation for the CMD Community's Externally-Led Patient Focused Drug Development Meeting with the Food and Drug Administration, Cure CMD partnered with long-time rare disease advocate Levi Gershkowitz and his team at Living in the Light to create a film highlighting the CMD experience.
The Tenacity of Hope features the journey for eight affected individuals living with congenital muscular dystrophy, along with two of our incredible expert clinicians, Dr. A. Reghan Foley and Meganne Leach, MSN, PPCNP-BC.
"Beyond the goal of sharing these stories with the FDA, we hope this film becomes a resource for the affected community to connect with and share, so that their own personal and professional networks can gain a better understanding of what this life is like," says Executive Director Rachel Alvarez. "We also intend to use The Tenacity of Hope to broaden the general public's awareness about this group of ultra-rare conditions and drive more resources toward the development of treatments and improvement in our community's quality of life."
Joe Koch shared, "Seeing [and being in] this film gives us a lot of hope for things to come, and for people not affected, to see what it really is. You don't always want to talk about bad news with someone, but a video like this can share what families like us go through day to day."
"This was a wonderful way for us to talk in depth about what our day to day life is really like and how hard [our affected son] works to navigate his condition and persist and persevere," says Lindsey Curley. "This is such a great mechanism to be able to show people why we need help, why we need funding, and why we need to rise to the top."
Watch the full film, three short clips, and our May 21 Talk Back with cast and crew in celebration of Cure CMD's 15th anniversary. And consider a gift to help us continue our work for this incredible community.