Join Manoj's Fight Against Friedreich's Ataxia

Fundraiser for Manoj's Treatment with Omaveloxolone (Omav)

Help Manoj Fight Friedeich's Ataxia

Dear Friends and Supporters,

I am reaching out to you with a heartfelt appeal for support. I recently launched a fundraiser via GoFundMe to help my cousin Manoj, who is battling a rare neuromuscular degenerative disease called Friedreich's Ataxia (FA). This genetic disorder affects the nervous system, causing progressive damage to the cerebellum, spinal cord, and peripheral nerves. As a result, individuals with FA experience loss of coordination, balance, and muscle strength, along with vision, hearing, and speech problems. Unfortunately, there is currently no cure for FA, but ongoing research aims to develop new treatments and therapies.

Manoj's Journey:

Manoj, who lives in Sri Lanka, has been approved to receive Omaveloxolone (Omav), a groundbreaking medication sold under the brand name Skyclarys. This drug, approved by the FDA in early 2023, is the only treatment available for FA. However, the cost of this life-changing medication is staggering, reaching almost $391,000 for a year's supply.

Our Goal:

We aim to raise $97,680 to cover three months' worth of treatment for Manoj. This period will allow us to assess the drug's efficacy in mitigating the symptoms of FA. Specialists in FA believe Manoj is an ideal candidate for this treatment, and the potential benefits include slowing the progression of the disease or even reversing some of its effects.

About Manoj:

Manoj is a warm, loving, and caring individual who enjoyed a full and active life until his early twenties. He played sports, drove, and participated in activities we often take for granted. However, FA began to erode his motor skills gradually, and today, he can only move with the help of a wheelchair. His speech has nearly disappeared, and his external muscles have mostly atrophied. Despite these challenges, Manoj retains excellent brain and heart function, full vision, and partial hearing. We believe that Omaveloxolone will significantly improve his quality of life and potentially extend his lifespan.

How You Can Help:

Your support can make a tremendous difference in Manoj's life. Every donation, no matter the size, brings us closer to our goal and gives Manoj a fighting chance against this debilitating disease. Please consider contributing to our GoFundMe campaign and sharing this appeal with your network.

Thank you for your generosity and support. Together, we can give Manoj hope and a better future.

Warm regards,