{"id":8943,"date":"2026-05-27T22:22:49","date_gmt":"2026-05-27T22:22:49","guid":{"rendered":"https:\/\/prrf.org\/?p=8943"},"modified":"2026-05-27T22:30:37","modified_gmt":"2026-05-27T22:30:37","slug":"gene-therapy-clinical-trials-and-a-fevr-cure-where-the-science-stands-in-2026","status":"publish","type":"post","link":"https:\/\/prrf.org\/ru\/gene-therapy-clinical-trials-and-a-fevr-cure-where-the-science-stands-in-2026\/","title":{"rendered":"Gene Therapy, Clinical Trials, and a FEVR Cure: Where the Science Stands in 2026"},"content":{"rendered":"
\"PRRF

The PRRF Family Connection Conference brought together board members who are leading pediatric retina specialists along with families affected by rare pediatric retinal diseases at Oakland University\u2019s Oakland Center in Rochester, Michigan and remotely on Zoom.<\/p><\/div>\n

The opportunity to \u201cAsk a Clinician\u201d all your burning questions is one of the most anticipated sessions during the Pediatric Retinal Research Foundation\u2019s annual Family Connection Conference. Each year, participants bring questions that often have been on everyone\u2019s minds. It sparks a dialogue that helps families stay informed but also reminds us how deeply we are connected.<\/span><\/p>\n

This year we hosted an extraordinary conversation with PRRF President and pediatric retina specialist <\/span>Dr. Antonio Capone Jr. <\/b>and our board member<\/span> Dr. Matthew Trese.<\/b> They covered everything from FEVR and ROP to gene therapy, clinical trials, and the future of personalized medicine for pediatric retinal diseases. Dr. Patrick Droste also joined to share decades of expertise on visual rehabilitation.<\/span><\/p>\n

Below are the highlights.<\/span> Watch the full Q&A session on YouTube \u2192<\/b><\/a><\/p>\n

FEVR (Familial Exudative Vitreoretinopathy): Retinal Tears, Treatment & Genetic Testing<\/b><\/h2>\n

The session opened with a question from a participant on Zoom, asking whether retinal tears are a normal finding in young adults with FEVR.<\/span><\/p>\n

Dr. Capone explained that in the United States, FEVR almost universally causes <\/span>tractional<\/span><\/i> retinal detachments, driven by scar tissue contracting on the retina,\u00a0 not tears. However, in parts of Asia, a combination of both traction and tears is more common, which has even led researchers in Japan to propose different classification systems for FEVR.<\/span><\/p>\n

\ud83d\udca1 Key Insight:<\/b> If your child with FEVR in the US has retinal tears, Dr. Capone recommends discussing whether another condition, such as high myopia (nearsightedness), might also be contributing.<\/span><\/p><\/blockquote>\n

<\/h3>\n

Treatment Options for FEVR Retinal Tears and Holes<\/b><\/h3>\n

Dr. Trese walked the audience through how tears and holes are managed, depending on how early they’re caught:<\/span><\/p>\n