Mindy, I'm usually in favor of testing, but I think you might have too much on your plate right now. Maybe you could set a condition that has to be met, like your husband's cancer has stabilized, or you feel totally confident about your Dad's care. A very wise friend once told me something that has helped me through difficult times. He said that Life will either go North or South on you. Yoby Will - Huntington's Disease Support Center
Sal, All we know now is that it's underway in Canada, Germany and the UK for no more than 36 patients with early manifest HD. It's a pure Phase 1 safety study, but a Phase 2a safety/effectiveness study has already been planned. I don't think anyone can forecast the timing of results. This is still a VERY BIG deal. I remain optimistic. Willby Will - Huntington's Disease Support Center
I had my annual ENROLL visit in September and am still symptom free at age 69 with my lucky CAG of 40. I ran my 40th Marine Corps Marathon on October 25th and finished with the other "Groundpounder", Al Richmond. We're the only people to have finished all the races starting in 1976. My time was the slowest ever, and I barely made a cutoff time at the 20 mile mark. I assumed old age wby Will - Huntington's Disease Support Center
Matt, Here's a great source of insurance information. In short, you'll be fine for health insurance and employment, but not for life insurance, disability insurance and long term care insurance. Some others may have some tips for those. You'll also be covered under the Americans With Disabilities Act (ADA) if you're symptomatic and it affects your job performance. Employers are required tby Will - Huntington's Disease Support Center
Matt, Read my blog at Start at the end. My CAG is also 40 and I'm symptom free at age 69. Willby Will - Huntington's Disease Support Center
Marsha, I knew you were just temporarily absent. You and Steve are the greatest. To use a basketball analogy, you're still beating the buzzer. I'm sure you catch my drift. Willby Will - Huntington's Disease Support Center
Yes that was me. Two of us have now finished all 40 races. I met mrspippens from the forum at the race. Her husband is a senior Marine officer who is part of race management. We share the same CAG (40). She and her family are delightful people. Willby Will - Huntington's Disease Support Center
I am!!! Willby Will - Huntington's Disease Support Center
Lori, If you're talking about the Hall of Fame dinner on Friday evening at the Crystal City Marriott, Yes!! It will be great to meet you both. I'll also have a guest who has run a bunch of races with me outside of MCM. She has also followed my HD saga. You can contact me directly at geezerjock100@yahooby Will - Huntington's Disease Support Center
I remember you! Yes I'll be there running in a special year for me and one other guy. By coincidence, or maybe not, both Al and I are retired Marine Colonels. Willby Will - Huntington's Disease Support Center
Howard. This is just terrible. I just sent your post to Jimmy Pollard off forum. Maybe he can help. Prayers for you both. Willby Will - Huntington's Disease Support Center
Liz, I am in ENROLL at Wake Forest Baptist Hospital in Winston-Salem, NC. It's a worldwide observational study for HD. It was formerly called COHORT in the US and was combined with a similar European study to form ENROLL. I was also in PREDICT-HD for about 5 years. PREDICT is a more intensive study with periodic brain MRIs and spinal taps. I don't think they're enrolling new subjects, but areby Will - Huntington's Disease Support Center
mare, Thanks for the kind words. Here's a Runners World article about my next event, which I'm training for now. I guess we never got the word that it was time to stop. Like my battle with the HD gene. I read a piece recently about a terribly wounded young Marine - he lost both legs and one arm. It doesn't bother him. He skis, sky dives, kayaks, cycles and does assisted "mud runs&by Will - Huntington's Disease Support Center
One thing to remember is that any policies that are purchased before testing can be easily cancelled if they test negative. That's what I did. I did test positive, but my personal situation is different from most. Willby Will - Huntington's Disease Support Center
I have tears in my eyes for all of you. Willby Will - Huntington's Disease Support Center
This is great news for everyone. It's bad news for me since I'm over the age limit to be a subject (65). However, the good news for me is that I just turned 69 and am still kicking! Willby Will - Huntington's Disease Support Center
Phew! You have had more than your share of challenges in your life. You're handling them all with courage and skill. It's about time you had some good news. Welcome! Willby Will - Huntington's Disease Support Center
Here's a fairly complete site. It doesn't have the ISIS trial or the ENROLL observational study. ENROLL is a worldwide stufy that combined the former COHORT and REGISTRY studies. PREDICT-HD is an observational study that will continue with folks already enrolled. Willby Will - Huntington's Disease Support Center
Barb, Rev Jim is an old timer. I remember him from the Lighthouse forum. Willby Will - Huntington's Disease Support Center
I'm not going to get in an argument with people who have preconceived notions about HDSA and HD Reach. I do want to point out a couple of facts. HD Reach has a new full time director because she resigned her position at Duke, relinquishing her psychiatrist's salary there. HDSA salaries are New York City salaries, which are notably larger due to the cost of living. I don't think anyone anywhereby Will - Huntington's Disease Support Center
No one will judge you here - just provide sympathy and a lot of knowledge. We're all in the same boat. Best, Willby Will - Huntington's Disease Support Center
Fred, Are you feeling OK? Willby Will - Huntington's Disease Support Center
I don't think you can do it yourself. Steve the Forum Dude might be able to. He could delete your subscription and have you register with a different name. Willby Will - Huntington's Disease Support Center
Margie, I had successful colonoscopies and major hemorrhoid surgery without problems, but I'm still aymptomatic. I know there have been some issues with anesthesia for HD patients. Here's a reference article from NIH that you might refer your doctor to. Good luck! Willby Will - Huntington's Disease Support Center
Welcome back. That was good news at the end of your post. The right doctors and the right medicines can make all the difference. Best, Willby Will - Huntington's Disease Support Center
Griz, I'm so sorry about your mother. Try to remember all the good times and not the bad. I couldn't find an easy way to contribute to a COE directly, but you could donate to the Huntington Study Group, who is responsible for a lot of HD research and clinical trials. Here's their donation and information site: Best, Willby Will - Huntington's Disease Support Center
Erika, My blog explains everything I've been doing at If you'll start at the bottom you will see my first post. Best, Willby Will - Huntington's Disease Support Center
You're quite welcome! If anyone from outside Canada would like to contribute to Laurie's race, it's easy to use a credit card on her page above. It will contribute in $CAN and make the conversion on your credit card. Good work Laurie! Willby Will - Huntington's Disease Support Center
Unfortunately the company shares its name with a notorious terrorist group. I would prefer to relate it to Lord Grantham's loveable late dog in Downton Abbey, also named Isis. I'll be glad to volunteer for any trials. As a longtime blood donor, needle sticks don't bother me anywhere. Great news! Willby Will - Huntington's Disease Support Center
I have been running a race in my home town of Raleigh, NC USA, the Umstead 100 Mile Endurance Run, since 1996. It takes place on a 12.5 mile loop course in a state park. It's primarily a 100 Mile race, but there is an optional 50 Miler that lists official results at that distance. I've been fortunate to finish the 100 five times and as of last year the 50 9 times. I was looking forward to finby Will - Huntington's Disease Support Center