We are excited to share that an article in the latest issue of the Speak Foundation’s LGMD News magazine covers a recent visit to India by members of the Jain Foundation and the John Walton Muscular Dystrophy Research Center in Newcastle, UK. Several events were held at the Bombay Hospital in Mumbai and the All-India Institute of Medical Sciences (AIIMS) in New Delhi. For 14 years, the Jain Foundation has partnered with Indian researchers, making India the second most represented country in the Dysferlin Registry. Our collaboration with Drs. Dastur and Gaitonde at the Center for Advanced Medical Diagnosis of Neuromuscular Diseases (CAMDND) in Mumbai has enabled patient participation in diagnostic research, access to genetic testing, and ongoing communication. Our aim for this outreach is to advance global trial readiness and foster cross-border collaborations to enhance care and research in dysferlinopathy. We invite you to read the article, “A Partnership-Building Visit to India on Dysferlinopathy and the LGMDs,” on the Speak Foundation’s website: https://thespeakfoundation.com/limb-girdle-magazine-1 spring 2025. Vol.5/Issue 2 Pages 12-15 (fb)

We’re excited to share that our leadership team attended the 2025 MDA Clinical & Scientific Conference hosted by The Muscular Dystrophy Association (MDA) in Dallas, USA from March 16 - 19. The conference was attended by over 2,000 attendees in-person and online bringing in experts, industry leaders and patient advocates from 39 countries. This year is the MDA’s 75th anniversary of creating legacy and impact. Laura Rufibach, Ph.D., Co-President, presented a poster describing “The impact of losing the ability to stand up on social participation in people with dysferlinopathy”. Sarah Emmons, VP of Patient Affairs, participated in MDA’s Neuromuscular Advocacy Collective meeting. Both the leaders engaged with industry partners, collaborated with other LGMD organizations, and connected with clinicians during the general sessions. There were 11 specialized tracks on a variety of scientific research. We learned about the latest advancements in neuromuscular diseases research, gene therapy advancements, and special considerations related to clinical care practices after gene therapy administration. It is essential for advocacy communities to come together and amplify their collective voices to address unmet needs, funding challenges for researchers and evolving healthcare policies. The presence and efforts of neuromuscular advocacy organizations and their support of pre-clinical research in the coming years will be critical. Read the full conference recap here- https://www.mda.org/press-releases/2025-mda-clinical-scientific-conference-showcased-groundbreaking-advances-in-neuromuscular-disease #MDAConference #MDA75 #NeuromuscularResearch #ClinicalAdvancements #RareDisease (fb)