MDA Conference Grants Support Resources to the Community

The Muscular Dystrophy Association (MDA) provides a significant number of research grants each year to scientists working in the field of neuromuscular diseases. But what many may not know is that MDA also provides grants to other organizations that provide services to individuals living with specific neuromuscular conditions, in the form of conference grants that support meetings of a scientific or educational nature, and bring researchers, clinicians and the patient community together.

Below, we are excited to share information about conference grants MDA has awarded in 2025 to supplement conference planning and production geared toward individuals living with specific neuromuscular conditions, their families and other stakeholders.

Conferences receiving funding from MDA in 2025 include:

2025 CMD Scientific & Family Conference

Intended audience: Stakeholders in congenital muscular dystrophy, nemaline myopathy, and titinopathy

City and State: Philadelphia, PA

Conference date(s): August 1-5, 2025

Registration link: https://www.scifam.info/

About the Conference: The 2025 CMD Scientific and Family Conference (SciFam) will convene as many as 500 stakeholders in congenital muscular dystrophy, nemaline myopathy, and titinopathy, and include researchers, clinicians, affected individuals and their caretakers/families, industry, advocacy, and government representatives.

SciFam is a two-part event with agendas tailored for 1) affected individuals, caregivers, and families to learn about the latest updates in research, care optimization, and opportunities to improve quality of life, and 2) researchers and clinicians working in the above listed subtypes to share their latest body of work, learn about advancements in other labs/clinics, and identify opportunities to propel these subtypes to clinical trials, as well as improve proactive care management practices.

2025 RYR-1-Related Diseases Patient-Led International Research Workshop: Novel Perspectives, Treatments and Interventions

Intended audience: Stakeholder in RYR-1-related diseases

City and State: Pittsburgh, PA

Conference date(s): July 23 – July 24, 2025

Registration link: https://ryr1.org/research-workshops

About the Conference: This workshop will unite international experts (researchers and healthcare providers) with affected individuals/family members to share knowledge, exchange ideas, form collaborations, and develop strategies for finding therapies.

Additional objectives are to develop a consensus for clinical/research priorities, create actionable items to move the field forward, and provide a platform for trainees to engage with patients/family members and leaders.

The workshop will consist of patients/family members, expert speakers, and members of the organization’s Scientific Advisory Board. Each session will include patients/family members as speakers. These individuals will share their experience related to challenges, successes, and recommendations. Sessions are designed to help healthcare providers/researchers appreciate patient perspectives, while also providing patients/family members the opportunity to interact with experts.

2025 CMTA Patient & Research Summit

Intended audience: Stakeholders in CMT

City and State: Plainfield, IN

Conference date(s): September 5–7, 2025

Registration link: https://summit.cmtausa.org/

About the Conference: The CMTA Summit offers life-improving presentations on living well with CMT and will provide a comprehensive update on CMTA’s Strategy to Accelerate Research (STAR) programs and initiatives, presented by top CMT researchers.

Presenters will share updates on the progress of both preclinical and clinical research in CMT, highlight the essential role of patient participation in the development of new treatments, and encourage attendees to support the advancement of CMT research by taking part in clinical trials and studies. There will be opportunities throughout the weekend to socialize with other Summit attendees, vendors, CMT experts, and more.