Eve and All, I've had my third monthly infusion of the Signal drug or placebo. 15 more to go. No spinal trap required - just an injection. The Ionis drug is gene therapy to fix the gene. The Signal one that I think I'm getting is a brain drug that is designed to work on symptoms, not the ultimate cause. In the first cohort it increased brain size measured by MRI scans and brain activity meaby Will - Huntington's Disease Support Center
Howard, Sure I remember you and Allison. I also don't like Facebook, but do check in here occasionally. It's a small world - I was once a commercial loan officer for RI Hospital Trust and worked at a branch in Warwick out by the airport. I have just passed all screening and have been accepted into the SIGNAL trial at Duke. I should start in a couple weeks with either the drug or placebo. Thby Will - Huntington's Disease Support Center
Actually it will be 18 months after screening. If accepted I'll be in Cohort B. Here's a brief description. The consent document ran 25 pages. Willby Will - Huntington's Disease Support Center
Patience will be needed. A much larger trial will start in the US to support the European results. When that is successful, the FDA will approve a roll-out. The very good news is that Roche's money is behind this. Willby Will - Huntington's Disease Support Center
I was screened a week ago for the Signal gene therapy trial at Duke. It will last nearly two years if I'm accepted. I think I have a good chance. I've aged out of many trials, but not this one. Age 71 was no problem! Willby Will - Huntington's Disease Support Center
Fascinating. Here's his website. It's not related, but I'm going to be screened at Duke in a few weeks for possible acceptance into the second group of the Signal gene therapy trial. That's the other one besides Ionis's. That would be huge - it will run 22 months. Willby Will - Huntington's Disease Support Center
Does he have diabetes? That could be the problem. He might be low in sodium and his system is trying to keep his fluid/electrolyte balance. A doctor can test that. Salt pills would help that. Willby Will - Huntington's Disease Support Center
Here's some evidence: Willby Will - Huntington's Disease Support Center
His address is in Italian, but that doesn't matter. He hugged and blessed everyone there. It took his holiness an hour. With tears in my eyes, Willby Will - Huntington's Disease Support Center
Pete, I think they're out of business. Try Willby Will - Huntington's Disease Support Center
There are 3 of those tests commonly done - the UHDRS, the Mini-Mental State exam and the Stroop Test. The Stroop is the beloved red/green/blue one. You'll understand why it's so loved. Willby Will - Huntington's Disease Support Center
I've had this done many times. It's painless. There's no reason to be scared. Willby Will - Huntington's Disease Support Center
I chose Prevagen because of clinical trials that showed it improved memory. I think my memory has remained stable based on my performance on the HDRS tests. Willby Will - Huntington's Disease Support Center
Pam, Just the medications. My HD doc has seen the supplements and doesn't see anything wrong with taking them. I chose based on some science and intuition by HD people - Dr. Lavonne in particular. Mine fall into the category "Can't hurt, might help." There's also a cost factor, since I can't afford everything. I think they cost around $1,200 per year. Willby Will - Huntington's Disease Support Center
Sarmiento, Your English is fine. I'm gene positive, CAG 40 with no symptoms at age 70. I took Trehalose for about 10 years, but in a much smaller dose - maybe 5 grams once a day. Something worked, but I think it was my exercise (running) and other supplements. I have added Prevagen about a year ago and dropped Trehalose entirely recently. Even a very small amount caused gastrointestinal pby Will - Huntington's Disease Support Center
My heart goes out to all of you. You're Saints. Willby Will - Huntington's Disease Support Center
Unfortunately no. Willby Will - Huntington's Disease Support Center
Barb, There was another MCM, my 41st. Unfortunately I had an attack of stupidity/carelessness and missed the 20 mile cutoff time by 10 seconds. I would have finished, but the rules are the rules. That's one of the few races that has a hard cutoff time. My finishing streak has ended, but I'll be back next year mad as a hornet at myself. The other guy who had a 40 year streak did finish andby Will - Huntington's Disease Support Center
Good news. I'd make a snow angel in Dusty's honor if we had any snow! Willby Will - Huntington's Disease Support Center
There were no takers! I'll give them away to someone else. Willby Will - Huntington's Disease Support Center
I just installed a new printer and have 5 unopened original HP high capacity ink cartridges that I can't use. They're worth maybe $150 and I'd be willing to donate them to anyone. They're the 61 cartridge and will fit any of the printers below. There are 4 black ones and one tri-color. I'll be holding a lottery after a week's time. Send me a private message with your address and a special reby Will - Huntington's Disease Support Center
MRO, I'm neither young nor at risk, but there is someone who might be the greatest resource for young people in the world. His name is Matt Ellison and he has a wonderful website at I've met Mattie in person several times at conferences and he is a delightful young man. Willby Will - Huntington's Disease Support Center
Shar, None of those are listed in the Stanford HOPES master list for HD drugs. Willby Will - Huntington's Disease Support Center
Pete and Laura, I was thinking about SSRI's, not statins. My bad. Good to hear from you. Willby Will - Huntington's Disease Support Center
Ouch. Is there any medication that would help him? Willby Will - Huntington's Disease Support Center
Something new. More evidence for all of us to get moving and keep moving! Willby Will - Huntington's Disease Support Center
carell, Good to hear from you. I belong to the HD Facebook group, but seldom read or post there. I've always preferred this message board format. I do check in here daily even when folks seem to be posting elsewhere. I'll turn 70 in August and start to collect my full USA Social Security pension to add to two others. Debbie and I have never had a taste for Ferraris and have lived frugally.by Will - Huntington's Disease Support Center
Thanks for posting Steve. There is one thing left out of the story. By process of elimination, my Father carried the HD gene. If he had died on Iwo Jima with 6,000 other Marines, Sailors and Soldiers, he would have left the gene there. I was born after the War, so I wouldn't be writing this if he had been killed. Willby Will - Huntington's Disease Support Center
Interesting. I notice it included 30-60 minutes of exercise 4 to 6 times per week. I seem to recall a previous AD study that showed improvement with exercise. Thanks, Eric. Willby Will - Huntington's Disease Support Center