Updated: Apr 6
Cure CMD is thrilled to announce a third year of funding from the Chan-Zuckerberg Initiative’s Rare As One Network, an effort to strengthen rare disease communities, connect them with one another, and build capacity to accelerate research. Along with a $150,000 grant for 2022 and the opportunity to network with others in the rare disease space, membership in the RAO cohort includes connections to partners, access to experts, and an extensive library of webinars.
In February 2020, the Chan-Zuckerberg Initiative (CZI) announced its cycle one grantees, and Cure CMD was one of 30 rare disease organizations to receive funding. Though the past two years hasn’t looked like anyone expected, the grant and network has been pivotal to Cure CMD’s activities and expansion over the last two years.
“Being part of Rare As One has undoubtedly made Cure CMD a stronger organization, not least because we’ve been able to work with new people who bring their expertise to our table,” says Cure CMD Executive Director Rachel Alvarez. “And while we may not always be able to speed up research, this additional funding does help accelerate progress. We’ve been able to develop community opportunities that we wouldn’t have otherwise, such as KSSK CMD Chats Pulmonary Web Series, a 2021-2022 webinar series on everything from back to school to mental health, the Virtual Happy Hour and Peer-to-Peer match programs, and a specific focus on young adult-relevant topics.”
This additional year of funding will support the Patient-Focused Drug Development meeting that is part of SciFam 2022, expansion of the Congenital Muscle Disease International Registry, mobile app updates, a research roundtable series, and more. Though the pandemic has stalled part of our plan—to initiate pulmonary traveling clinics to educate non-expert respiratory clinicians how to recognize and treat early signs of respiratory weakness in neuromuscular patients—the organization did create the KSSK CMD Chats pulmonary web series to address pulmonary care in lay language, empowering the community directly.
“What I’m most excited about with this unexpected funding is that we are able to continue working with the CZI round one grantees, along with 20 additional organizations in the rare disease space,” says Scientific Director Gustavo Dziewczapolski. “Doing so allows us to learn from and support one another in our respective journeys.”
I wonder if it would be better to share a link to an RAO page. we could. For best practices, you usually want to link to your own content rather than another org's. But we can link to RAO page if you prefer.