Programs
Research Grants for CMD
Research Grants - From its origins the most significant committment of the organization was to find and fund high potential resarch and cinical trials. Cure CMD's mission is to bring research and treatments to the Congenital Muscular Dystrophies. Applications are reviewed in detail by Cure CMD's Scientific and Medical Advisory Board and each application is scored on pre-determined criteria. In 2022 CCMD announced funding or co-funding of eight new grants covering five subtypes. The awards were granted and will be made over multiple years with awarded organizations providing CCMD with regular updates to the usage of those funds. Funding made through 2022 relates to both grants awarded in the current year as well as continued payment of prior year grant awards.GeographiesNot indicatedDatesJan 1, 2022 – Dec 31, 2022Source990No causes providedNo populations provided–$530.2KCongenital Muscular Dystrophy Registry
Registry - In an effort to more rapidly progress CMD research to clincal trial readiness and other phases. Cure CMD identified the strong need to establish an international patient registry. Unlike more common forms of muscular dystrophy congenital muscular dystrophy is extremely rare often misdiagnosed and there was not a signle source of information on affected individuals. As a result it is difficult for researchers to plan for CMD clinical trials because the accurate numbers and characteristics of the CMD patiient population were not entirely known. In an effort to help sollve this problem CCMD launched the Registry. The registry allows those affected individuals and their families to identify themselves and creates a central database of CMD patients. The registry will collect patients' contact information certain medical to identify themselves and health survey responses. The collelction of information will ultimately provide the most complete and centralized dataset of CMD infomration as well as provide a more efficient means of connecting patients with the ultimate clinical trals. In addition CCMD has opened the registry to partner organizations from other congenital muscular disorders. Those organizations assist in funding both the CMDIR as well as the Tissue Repository.GeographiesNot indicatedDatesJan 1, 2022 – Dec 31, 2022Source990No causes providedNo populations provided–$35.5KCMD Advocacy and Awareness Conferences
Advocacy Conferences Outreach - An important aspect of Cure CMD's mission is to spread awareness and advocate for the affected population as the extreme rare incidnece often pushes rare diseases to the background for awareness research opportunities and funding. Cure CMD typically attends multiple scientific conferences throughout the year in order to increase awareness as well as stay on the forefront of upcoming research and trends. Dr. Gustavo Dziewczapolski is Cure CMD's Scientific Director. He helps coordinate the research grant programs as well as build relationships with research institutions clinicians and pharmaceutical companies. He often represents Cure CMD and the CMD community at various conferences. During 2022 cure CMD was thrilled to be able to once again hold its SciFam Joint Science and Family Conference in Nashville TN. The symposium brought together researchers from basic to translational to clinical backgrounds to synergize collective knowledge and experience to accelerate the bench-to-bedside pipeline toward clinical trials and to share their expertise with the paitent community. A portion of the conference was intended for thi scientific collaboration among these dedicated research and clinical doctors providing a collaborative opportunity for the scientists to learn and share with each other. The rest of the conference then shifs to presentations from researchers and affected individuals designed as to help provide best practices for various individual care such as pulmonary phyisical therapy feeding and nutrition etc. Many of the sessions were recorded and are preserved on Cure CMD's YouTube channel for those that were unable to attend. We are grateful to the many researchers clinicians therapists and families that were able to attend either in person or virtually. The dialogue comradery and opportunity to discuss shared personal experiences also served as an invaluable take-away for many. We are gratefl to the organizations and sponsors who helped provide the opportunity to make this event take place.GeographiesNot indicatedDatesJan 1, 2022 – Dec 31, 2022Source990No causes providedNo populations provided–$685.7K
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