The Quest to Cure a Rare Muscle Disease (HIBM) Just Got More Serious
The Neuromuscular Disease Foundation (NDF) has announced the appointment of Lalé Welsh as their new (first, paid) Executive Director. She will assume responsibilities immediately, and will succeed Carolyn Yashari Becher, Esq. who shall join the Board of Directors and remain highly engaged in the governance of NDF.
Carolyn Yashari Becher has been part of the NDF team from its inception and served as Executive Director (pro-bono) since 2010. “As an experienced professional Executive Director, Lalé Welsh has the requisite skills, determination and vision to search out the most promising research projects so that our donors’ support can be properly invested; moving us closer to a cure for HIBM.
Lalé Welsh has a 20-year leadership background in game-changing Silicon Valley technology start-ups and a decade long history of management consulting for public benefit corporations and philanthropic organizations which she believes will be increasingly altered by the scope and role of technology in medicine.
The newly appointed Executive Director, Lalé Welsh, says: “I look forward to working with our distinguished Board of Directors and Scientists world-wide, to raise awareness for this genetic disorder, through continued patient advocacy, clinical trials and academic collaborations. But leveraging emerging technologies such as CRISPR, and combining it with solid science towards a treatment and cure for HIBM is of utmost urgency; we are dedicated to funding new and existing research in this field to ultimately eradicate the suffering of these patients”.
HIBM (also known as GNE-Myopathy) is a rare and debilitating form of muscular dystrophy that causes young people’s muscles to waste away and robs them of their ability to do all of the everyday activities that the rest of us take for granted. While the recessive form of the disease is most common among the Japanese, Iranians, and the Jewish community, HIBM is pan-ethnic, and affects people around the world. There is currently no treatment or cure.