Help Charlie conquer - FSHD1 muscular dystrophy

Hello, my name is Charlie, and I have FSHD1. I was clinically diagnosed in 2015. The main symptom of FSHD1 is severe physical weakness as the genetic disorder gradually replaces muscle with fat. Facioscapulohumeral muscular dystrophy (FSHD) affects everyone differently at different degrees and speeds of deterioration. But what is shared by all afflicted with this genetic disorder is that there is no treatment or cure, and most end up in a wheelchair or far worse.

My daily care and occupational assistance have been very costly. Over the last seven years, I have exhausted all of my financial resources and accrued large and un-serviceable debts. Currently, I cannot walk without mechanical assistance, and stairs are impossible; a curbside may as well be a wall, but the most debilitating thing is that I cannot get up from a seated position or the floor. That particular weakness started to manifest itself in 2019, and of all the FSHD symptoms, that one is the absolute worst.

Today, I am seeking charitable donations through gofundme.com because I am not eligible for federal disability benefits and don’t have access to other traditional financial support. The money I raise will go towards making me financially whole again and, most importantly, allow me to invest in my future. These funds will allow me to participate in a Phase 3 drug study, vehicle and living modifications, experimental Rx and the production of youtube videos to raise awareness and educate others about FSHD. The most critical financial items are my debts and access to a Phase 3 study which will require me to travel, with expenses that are wholly out of pocket; otherwise, I will not be able to participate and benefit from the potential treatment for my condition.

Today I am seeking $67,000. That is the sum total of my emergency funds, savings and credit that I have spent over the last seven years managing my physical and professional decline. The good news is that my “investment" has allowed me to physically and mentally adapt to my condition. In that time, I achieved a kind of disabled “soft-landing,” as I have developed systems that allow me to save money and enjoy more physical and professional independence. This transition was not easy; it was painful, depressing and demoralizing because I was an average, functioning and non-disabled man in 2015 with a thriving and growing business. I can only compare it to being blinded or paralyzed - eventually, you transition and get used to it and make it work. Still, that transition does not happen overnight, and it is never easy or predictable. Miraculously though, I have received tremendous love and care from my neighbors Anna and Juan, who have shown me what genuine compassion looks like, and for that, I am eternally grateful.

My need for daily care has been reduced significantly. And the main reason is that I no longer need lift assistance or constant daily care because my neighbor and I invented a “ceiling winch” system that has been a real game changer for me - (see pic). Eventually, I will need to install two more lift assists in the bedroom and the bathroom as my strength diminishes.

Lastly, as a professional video producer, I will make it my mission to help others suffering from this condition better cope with the challenges of FSHD by creating video content for the web. Content that instructs others on how to build the “winch system” and other helpful and ingenious strategies and products I have discovered along the way. Also, I may be participating in a Phase 3 drug study, and I will be able to document that experience. Furthermore, there are experimental treatments, expensive but also very promising - and with your donation, I will be able to invest in those treatments, all the while documenting my experiences to hopefully help others suffering from FSHD.

If I can be an example to others and, in some small way, help others by producing informative and inspiring videos, this would give me a true purpose and the courage to carry me through the challenging years ahead. Years in which I will make it my goal to cultivate acceptance, drive, knowledge and gratitude.

Thank you for taking the time to read my plea. May God bless you and yours :)

Charles Branson