This gives an idea of what we do here, and why it’s worth all the aggravation. I have literally hundreds of wonderful appreciation emails telling me how the board has changed peoples’ lives for the better. This one I just received though is so moving that I have to share it. I’ve removed the names for the writer’s privacy:
This is OT. A letter of praise and appreciation for helping save my daughter.
In 2020, I found this board and jumped in. At about the same time, my 14 month-old daughter was struck down by an “incurable” ultra-rare, neurodegenerative disease. To give you an idea, within 3 weeks she regressed from walking and talking, to being unable to sit or roll over.
We desperately searched for hope and found that in modern genetic research. We identified a path to a drug treatment through Drug Repurposing and a path to a cure through a gene therapy known as AAV9 - Gene Addition. Each pathway comes at great expense and zero assistance from Government.
Fortunately, I had already found this board and had accessed the knowledge shared by yourself and this dedicated and determined community. With your help, unbeknownst to you, we had a lifeline: a chance to save our daughter.
On June 30, 2021, (Australia’s EOFY) we marched into the laboratory with $474k and initiated Our Mission: to cure SPG56. That money is 100% attributable to Saul’s Discussion Board.
I want to say thank you, scream praise. And also share that next month, in a dish, they will be trialling the cure on our daughters diseased cells. In just 11 months we will have advanced a dream into a saul-otion. We are well on the way to ridding the world of this insidious disease, not just for our daughter, but for all children like her.
Thank you, Saul. Your efforts and dedication have far reaching effects, greater than you imagine.
xxx and yyy
Happy for you to share. And would you consider meeting a small Aussie family on a 30 sec zoom, just long enough for my daughter to sign thank you, and my wife and I to give you a huge virtual hug?