Be a light of hope this holiday season. Ignite more progress, restore more freedom, and inspire more hope for families living with neuromuscular disease.

About Us

Our mission is to empower people living with neuromuscular diseases to live longer, more independent lives.

Muscular Dystrophy Association Announces $300,000 Research Infrastructure Grant to Propel Advancements in Neuromuscular Disease Treatment through Global Clinical Trial Standards for Charcot-Marie-Tooth Disease

New York, August 6, 2024 — The Muscular Dystrophy Association (MDA) announced today an MDA Research Infrastructure Grant for $300,000 to Joshua Burns, PhD towards establishing a global certification standard for clinical evaluators focused on Charcot-Marie-Tooth disease (CMT), with the potential to revolutionize the field of muscle disease research. Through collaboration with his team of multinational co-investigators and collaborators, CMT Master Trainers and Patient Advocacy Groups worldwide, Dr. Burns aims to enhance trial readiness and scale-up trial capacity by building a network of reliable evaluators equipped with standardized clinical outcome measures via ClinicalOutcomeMeasures.org, a website established with an MDA Ideas Grant.

"The establishment of a global certification standard for evaluating CMT represents a major advance in our ability to translate promising therapies from preclinical development to clinical trials. By ensuring the accuracy and reliability of clinical outcome measures, this initiative has the potential to expedite the translation of research into practice and improve outcomes for people living with CMT and related neuropathies," said Dr. Burns.

Picture of Joshua Burns, PhD
MDA Research Infrastructure grant for $300,000 awarded to Dr. Joshua Burns of towards establishing a global certification standard for clinical evaluators focused on Charcot-Marie-Tooth (CMT) disease, with the potential to revolutionize the field of muscle disease research.

MDA Research Infrastructure grants are aimed at driving scientific breakthroughs in the treatment of muscular dystrophy and related neuromuscular diseases. Through a rigorous selection process, MDA has awarded substantial research grants to esteemed scientists and institutions, with a significant investment in accelerating progress toward effective therapies and ultimately, cures.

“Dr. Joshua Burns' groundbreaking work at establishing a global certification standard for evaluating Charcot-Marie-Tooth (CMT) disease is a critical step forward in our mission to drive scientific innovation and improve clinical trial outcomes. This initiative will not only enhance the quality and consistency of clinical trials in the MDA Care Center Network, but also accelerate the development of effective therapies for individuals affected by CMT and related neuromuscular diseases,” said Sharon Hesterlee, PhD, Chief Research Officer, Muscular Dystrophy Association.

This research grant underscores the MDA's steadfast commitment to driving progress in neuromuscular diseases. By investing in cutting-edge research initiatives, the MDA is empowering scientists and institutions to pursue innovative approaches and accelerate the development of life-changing therapies. For more information about the Muscular Dystrophy Association and its research initiatives, please visit MDA.org/Research.

About Muscular Dystrophy Association

Muscular Dystrophy Association (MDA) is the #1 voluntary health organization in the United States for people living with muscular dystrophy, ALS, and related neuromuscular diseases. For over 70 years, MDA has led the way in accelerating research, advancing care, and advocating for the support of our families. MDA's mission is to empower the people we serve to live longer, more independent lives. To learn more visit mda.org and follow MDA on Instagram, Facebook, X, Threads, TikTok, LinkedIn, and YouTube.

Find MDA
in your Community