In the great effort to bring treatments to ALS patients Richard funded a clinical trial for FC-12738. This molecule is novel (Richard and I called it TVALA)...the world has never seen it before! It engages the failing immune system and will (hopefully) RESET an ALS patient's ability to normalize neuroinflammation—slowing disease and allowing doctors to stack additional life-saving therapies as patients change over the course of their illness.
The down side...the world has never seen this molecule before! The ever cautious FDA wants us to dose some normal folk before we go after saving ALS patients. Richard's Study enrolls 2 people (one dosed and one not, they are called sentinels) and if no one is adversely affected, and they are still alive after 8 days, we can then dose 6 additional normal people (at the same dose). We are happily reporting no adverse events after 8 folk got 4 mg and 8 folk got 8 mg. The sentinel normal's got 16 mg last week and on May 31, fingers crossed, the six additional people will be dosed. After 8 days we will send the data to FDA and get to what Richard really wanted...an new drug to get into clinical trial for ALS patients.
This photo is when Richard was talking to me about his provisional diagnosis, it was in 2019. He took a selfie and joked about jumping...he almost went over the rail so we had a good laugh!!
Last year, my 68-year-old partner was diagnosed with Lou Gehrig's disease also known as ALS. Speaking and swallowing were two of his challenges. His collapse was swift and catastrophic, and neither the riluzole nor the medical staff did much to aid him. He would not have survived if our primary care physician hadn't given him attentive care and attention, as the hospital center didn't provide any psychological support. His fall was abrupt and catastrophic. His hands and legs gave way to weakness in his arms. This year our family physician suggested using vinehealthcentre. com ALS/MND treatment, which my husband has been receiving for a few months now. I'm delighted to say that the treatment greatly reduced and reversed his symptoms of ALS, he no longer requires a feeding tube, sleeps soundly, works out frequently, and is now very active. In the hopes that it could be useful, I thought I would relate my husband's tale; in the end, you have to do what suits you the best.