On Sunday, Sept. 10, Solve GNE, a nonprofit at the forefront of a groundbreaking mission to combat a debilitating genetic disorder with significant prevalence in the Iranian Jewish community, will hold a landmark global webcast about the pursuit of a cure.
At 8 a.m. local time, you log on and be a part of a special webcast, “A Ray of Hope,” where Solve GNE’s collaborators will present their strategies and answer questions from the audience.
Solve GNE works to find a cure for the life-altering condition known as GNE Myopathy (GNEM) or Hereditary Inclusion Body Myopathy (HIBM). It is estimated that 10-15% of the Persian Jewish community are carriers of the genetic mutation that causes GNEM, underscoring the critical need for innovative solutions.
About Solve GNE
GNEM is a rare muscle-wasting genetic condition. The condition is marked by progressive muscle weakness that begins in the legs and works its way to the upper body and through the entire skeletal muscle system. The condition often leaves those affected completely wheelchair-bound within 20-30 years of diagnosis. The condition often manifests in young adults and, in some cases, symptoms can begin as early as late teens. The impact of progressive muscle atrophy on individuals and their families is profound, creating immense challenges in daily life.
Fortunately, a group of effected families began working towards a cure back in 2021 and have since made some substantial progress to that end. These families founded Solve GNE, a non-profit that has raised over $2.5M to date. Solve GNE is currently funding a consortium of leading experts in gene therapy and GNEM, who have contractually agreed to work towards advancing various gene therapies for HIBM into phase 1 clinical trials by the end of 2024. Each budgeted project has specific deadlines and milestones. It is also worth noting that all funds will go directly towards research. Solve GNE has minimal overhead, and all board members and advisors are providing their expertise pro bono.
You can find more information on the webcast and GNE, and how to donate at www.solvegne.org.