Welcome to the community section of HDLF.org. This section is intended to help guide you through the wealth of information available on the Internet for families affected by Huntington disease.
We invite you to try out our active message board at HDLF Forum. It's a public message board so that you can chose to just read what's there or actually participate by helping others or getting answers to your own questions.
Will Brown, Tue, 04/16/2013
This past Saturday I ran my annual 50 mile race at the Umstead 100 Mile Endurance Run in my hometown of Raleigh, NC. I have finished the 100 five times and the optional 50 miler 9 times, including this year. I’m also on the Race Committee and handle registration and awards.
Will Brown, Mon, 02/18/2013
I know when we fell in love. She was dating my roommate in prep school. Yes, I went to a snotty boy’s boarding school in New England. I wasn’t from a wealthy family, but had a working scholarship. I worked in the kitchen every day to earn my way through. She was from an old family and went to a snotty private girl’s school. I’m not sure how it happened – it just did. I was kind of a jock – co-captain of the hockey team and a starting attackman on the lacrosse team. Maybe that attracted her. She was smart and physically attractive.
Will Brown, Wed, 01/16/2013
We all know that exercise is beneficial for everyone. It’s particularly important for people with, or at-risk for HD. A New Year’s resolution made and kept will make you look and feel better. Do you have to go to a gym 6 days a week and sweat bullets to get in shape? NO!!! Do you have to run marathons? NO!!! Do you have to spend a fortune on fancy equipment? NO!!!
Mike, Sat, 12/29/2012
If you are reading this, you have probably been affected by Huntington Disease or know someone who is affected by this terrible disease. For many, Huntington's is like a mugger in the night that stalks your every step. At every turn, every corner your mind sees the shadow of Huntington's following, waiting to strike if it hasn't already. For some twenty five percent of us who are HD positive, there is no family history and no one in the shadows to be concerned with. No symptoms to be watching for that may indicate the need to test.
Will Brown, Mon, 12/03/2012
I chose my supplements based on research and cost. I couldn’t afford to take everything I would like to, so I chose those with the best potential at affordable amounts. That’s why I chose Creatine alone instead of a combination of it and Coenzyme Q10. There is not a lot of hard research on neuroprotection, so I also chose under the philosophy “Can’t Hurt, Might Help”.
Will Brown, Sun, 11/18/2012
n January, 2012 I was asked to participate in this study being conducted by the Clinical Research Unit (CRU) of the Wake Forest University Baptist Medical Center in Winston-Salem, NC. This was to be a short, but intense study evaluating the safety of a promising new drug for the treatment of Huntington’s Disease.
Will Brown, Sun, 11/18/2012
I was a pretty good student in high school and college, but I had one failure in my senior year of high school. I had to drop out of Introduction to Calculus. Somehow I got my Bachelor's degree and an MBA without it, but that had always bothered me. I recently found a truly amazing site to go back to school and try calculus again.
Will Brown, Sun, 11/18/2012
Those who have read my story may recall that I'm one of 4 people who have finished all the Marine Corps Marathons in Washington, DC, starting in 1976. I'm the youngster of the group at 66. The others are 70, 72 and 74. The 37th race was last Sunday and we all finished, but not in our usual order. Traditionally, the oldest guy, who has fast genes, finished well ahead of the rest of us. I was usually second behind him. The race has nicknamed us the Groundpounders, a play on the slang for a Marine infantryman.
Kelly B, Sat, 11/17/2012
Delusions can be a big part of Huntingtons with some people. I have a sister who is completely delusional. It really keeps us on our toes to try to keep up with all the different ideas she comes up with. Trying to reason all the time with someone who has an altered grasp of reality and a 5 second memory span is a full time dance/job. She keeps coming up with these brilliant ideas but because she does not see her disability at all she feels she is capable of everything and everything.
Steve Ireland, Mon, 11/12/2012
On December 6, 2012, Michael J. Astrue, Commissioner of the Social Security Administration (SSA), will hold a Compassionate Allowances event in the Hart Senate Office Building, Washington, DC, from 10:00-11:30 a.m.
