Foundation Joins the Institute for Gene Therapies, a Newly Formed Advocacy Organization

The Foundation Fighting Blindness has joined the Scientific Advisory Council of the Institute for Gene Therapies (IGT), which is advocating for a modernized regulatory and reimbursement framework that encourages the development of transformative gene therapies and promotes patient access. The Institute works with stakeholders across the healthcare system.

Members of IGT’s advisory councils include Johnson & Johnson, PTC Therapeutics, Sarepta Therapeutics, and Spark Therapeutics.

The Chairman of IGT is Congressman Erik Paulsen (MN-3) who served from 2009 to 2019 as a leading member on the House Ways and Means Committee, which has jurisdiction over healthcare, economic, and trade policy.

Todd Durham, PhD, vice president of clinical development at the Foundation Fighting Blindness, represents the Foundation on the IGT Scientific Advisory Council. 

“While those of us in the gene therapy community appreciate and understand the power of gene therapies to restore vision and address myriad other medical conditions, it is incumbent upon stakeholders like us to raise awareness broadly about the cutting-edge treatment approach,” says Durham. “By educating other healthcare and regulatory stakeholders about the benefits of gene therapy, we will speed treatment development and ensure patient access.”

Approved by the US Food & Drug Administration in December 2017, LUXTURNA® became the first gene therapy to receive regulatory approval in the US for the eye or an inherited condition. The treatment has restored vision in people with severe vision loss from Leber congenital amaurosis and retinitis pigmentosa caused by mutations in the gene RPE65. Approximately 24 emerging gene therapies for other retinal degenerative diseases are currently in clinical trials.