We stand beside you Ken in your wish for a negative test result. However, I am unable to ignore your chastising post. I particularly find being told publicly how and who to moderate particularly indelicate and particularly offensive. We've shared the journey of many HD family members over the last 14 years and I will testify to the fact that Barb has added much more to this site than eby SteveI - Huntington's Disease Support Center
It's nice to know that someone misses my ham handed thread moderation.by SteveI - Huntington's Disease Support Center
Did you say something bad about me and I missed it? Dang!by SteveI - Huntington's Disease Support Center
If you are interested in a cure for HD then you should definitely know who CHDI is. They are "the elephant in the research room" and their focus is purely on developing a treatment for Huntington's Disease. I encourage everyone to know how CHDI influences HD research.by SteveI - Huntington's Disease Support Center
Fred, your post is nicely understated. The HD community is now tenuously waiting the outcome of this "outing" of our financial HD Angel. Andrew Schectel is CHDI, so if he finds that the publicity too much to handle he could pull the plug, but we are hopeful that he only finds it a minor annoyance and continues his quest to find the cure. He did go through a LOT of effort toby SteveI - Huntington's Disease Support Center
Thanks Vicky and Chicago for your feedback.by SteveI - Huntington's Disease Support Center
You'll enjoy it ... best tip? Don't be shy! I've lost track of the number I've been to but it's at over 10. The first few I used to absorb everything I could about HD research and HD care ... then it transitioned into meeting my cyber-friends ... and then after I joined the HDSA board of trustee I lost a day to a board meeting :-( but still manage to connect.by SteveI - Huntington's Disease Support Center
Hello and welcome to HDLF. Depression (that dark place you refer to) is common for both the HD patient AND the caregiver. Some of the treatments for depression have been shown to delay progression. Refer to Stanford University's info page on SSRI medication at https://www.stanford.edu/group/hopes/cgi-bin/wordpress/2011/09/antidepressants-and-hd/. We are here to provide information for yourby SteveI - Huntington's Disease Support Center
Welcome to HDLF. This isn't a perspective that we often get to hear so thanks for sharing you thoughts. I'm so sorry you tested positive. You already know this but family matters and you have a lot on your plate that you shouldn't try to carry by yourself. you might want to reconsider letting your mom know so that she can provide support and an objective perspective as you make the importantby SteveI - Huntington's Disease Support Center
Thank you everyone for your thoughts. There is no question in my mind that Debbie is in a much happier place now ... no longer constrained by the limitations forced on her by Huntington's disease. It is only our loss that Debbie has moved on and we are blessed to suffer that loss for her. Steveby SteveI - Huntington's Disease Support Center
It’s fine to give blood when you’ve tested positive for the HD gene. I was a regular donor when I found out I had it and one of the first things I did was to check to see if I could still give. At the time I was a blood drive sponsor for a North Carolina agency and had access to the full Red Cross eligibility manual. It said, “… donors with the Huntington’s Disease gene are acceptable aby SteveI - Huntington's Disease Support Center
Several years back we posted several articles about his work in the area of CoQ10 and Creatine for HD.by SteveI - Huntington's Disease Support Center
by SteveI - Huntington's Disease Support Center
Pete, I participated in the HD Support Group down in Austin, TX for a few years - the last couple of years I was responsible for keeping the group going. When I moved away a few years ago the awesome social work took over the lead and I understand that the group is still in business and doing very well. I found it very useful to get a sense of what other families were going through during theby SteveI - Huntington's Disease Support Center
Why do you ask? Are you thinking about joining one or starting one?by SteveI - Huntington's Disease Support Center
Obviously organ donation for research is a great way to make a direct impact on research as Will is doing. For other types of donations I reached out to the Health Resources and Services Administration for answers about organ donation. Here is their response to me. Dear Mr. Ireland, Thank you for your inquiry to the HRSA Information Center. There is information from the U.S.by SteveI - Huntington's Disease Support Center
Can’t attend the 28th Annual HDSA Convention? Then HDSA will bring the Convention to You! HDSA will be providing a live videostream of the Opening Ceremony, the Research Forum, and a selection of workshops so you can participate from your home, or organize your own “satellite convention” – gather together with other members of your local HD community and watch as a group. Thiby SteveI - Huntington's Disease Support Center
I wish. :-)by SteveI - Huntington's Disease Support Center
I apologize for the pathetic, low-life, pin-headed,dirt-bag who so rudely blasted his marketing trash on this site. Fortunately I've learned how to easily undo that sub-human's damage. Steveby SteveI - Huntington's Disease Support Center
Up at the top right corner of the page should be a search box. Is that what you were looking for or were you looking for what they called an advanced search?by SteveI - Huntington's Disease Support Center
Will Brown offers up another commentary where he relates his running experiences to life with HD. I'm sure you'll enjoy it as I did. Click on Finding An Excuse to Quit It's too bad I can't take up running because of my gout and tendency toward shin splints. Steveby SteveI - Huntington's Disease Support Center
Great News: We now have Senate legislation! Yesterday, Senator Gillibrand introduced the Huntington’s Disease Parity Act in the Senate. Our new bill number is S. 723. We also have two original cosponsors, Senator Blumenthal from Connecticut and Senator Tester from Montana. I will be sending out a general email shortly, but I wanted you to be the first to know. Please take a minute to email theby SteveI - Huntington's Disease Support Center
by SteveI - Huntington's Disease Support Center
Ditto from Steve and Marsha. Dave is one of our long time HD Heroes.by SteveI - Huntington's Disease Support Center
The pressure is on me now.by SteveI - Huntington's Disease Support Center
On Wednesday, April 3, HDSA, in partnership with Senator Kirsten Gillibrand, will host a research symposium, entitled 20th Anniversary of the HD Gene Discovery: Lessons Learned in Washington, DC. Dr. Francis Collins, Director of the NIH, will serve as the keynote speaker. Dr. Jim Gusella, Dr. Marcy MacDonald, Dr. Nancy Wexler, and HDSA CEO Louise Vetter are also confirmed to speak. If youby SteveI - Huntington's Disease Support Center
We have legislation!! The Huntington's Disease Parity Act has been reintroduced in the House as H.R. 1015. Thank you to our champions, Congressman Bill Pascrell, Jr. and Congressman Adam Kinzinger. Take action at http://www.hdsa.org/takeaction to ask your Rep to become a cosponsor! From Jane Koganby SteveI - Huntington's Disease Support Center
Dear HDSA Friends Today, February 28, is Rare Disease Day, an annual observance celebrated around the world to communicate need to find treatments and cures for the tens of millions of people suffering from rare diseases. In the United States more than 30 million people have a rare disease—66% children. Only a few hundred of the 7000 identified rare diseases have FDA-approved treatments.by SteveI - Huntington's Disease Support Center
There is a Webinar this Wednesday that might be of interest to many of you that covers stem cell research related to HD research and therapeutics. You can register for it on HDSA's Web site at: https://www.hdsa.org/events/11841/details.html Steveby SteveI - Huntington's Disease Support Center