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PRESS RELEASE: Cure VCP Disease, Inc. Awarded $25,000 Muscular Dystrophy Association Advocacy Collaboration Grant

Grant Empowers Collaborative Project to Make Clinical Trials More Accessible


(FEB. 1, 2024 – WARNER ROBINS, GA) – Cure VCP Disease, Inc., a patient advocacy organization dedicated to finding a cure for VCP disease, announces it has been awarded a $25,000 Advocacy Collaboration Grant from the Muscular Dystrophy Association (MDA). Cure VCP Disease is one of seven organizations chosen by MDA in a competitive application process, where each applicant proposes a collaborative project designed to drive positive outcomes for the neuromuscular disease community.


“We are thankful to the MDA for empowering our collaboration with Emmes Endpoint Solutions and Nationwide Children's Hospital to explore innovative ways to make clinical trials more accessible and sensitive through remote outcome measures,” said Allison Peck, Cure VCP Disease CFO.


Cure VCP Disease’s project builds on its current natural history collaborations with Nationwide Children’s Hospital and Emmes Endpoint Solutions, using statistical analysis and scoring processes to help validate the use of home-based videos for future clinical trials in VCP disease.


The results of the project are intended to address some of the main barriers to clinical trial success in neuromuscular disease: the availability of sensitive and reliable outcome measures and the ability to improve equitable access to trial participation through decentralization.

 
 

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, Twitter, TikTok, and LinkedIn.

 

About Cure VCP Disease, Inc.

Cure VCP Disease, Inc., is a patient advocacy organization founded in 2018 to drive the development of a cure for diseases caused by valosin-containing protein (VCP), including muscle disease, bone disease, and the neurodegenerative diseases ALS, FTD, Parkinson’s, and CMT. Our mission is to build collaborations, fund research and support patients within the global VCP community. We provide global education and awareness of VCP disease through conferences, educational webinars, and family support groups; facilitate a research network of over 70 scientists; and partner on research initiatives, including natural history studies, gene therapy, and drug discovery programs. Visit www.curevcp.org for more information.

 

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