Davy Crockett's descendants, who are at risk for Huntington's Disease, asked President Obama at a Press event for assistance since they have been denied Social Security benefits. How did we miss this? #cureHD

Ihttps://www.facebook.com/wjhlTV11/videos/824192627646765/
Man from Bulls Gap, TN asks President Obama a question
President Obama visited Nashville today to address a crowd and took questions about health care and ...

You got your ears on HDSA?

I thought the POUS remarks were very insulting and condescending.

May well be.

But then, I am too old to be insulted and have been in this business too long to feel condescended upon by anyone, even the POTUS.

I see it is an opportunity for someone with creds in the community to put together a one pager - HD is, background on HD parity senate and house bills, and impact on the community because HD is not recognized by SSA , as are ALS, Parkinson's, Alzheimer's - not a sales pitch - that each of us can sign and send to our senators and representatives in response to the question from the floor. And,then, separately expand/narrow the question from the floor so we can submit it as a topic when the Administration has its's next question/answer session on the web.

I, for one, will write personal letters to Senator Cardin, who sits on the Senate Social Security Subcommittee, and Congressman Hoyer, the minority whip, reminding them that people with HD are among their constituents. and have the same issues as the individual who asked the question of the President.

from the south of Maryland

Fred Lothrop

Fred, please do not feel I am aurguing, I agree that the event does open a window of oppertunity.

I would think that such encounters with the POTUS do have a little prewarning and that some one from HDSA at that time presented the question, explaining Mr Crocketts history and then Mr Crocketts plea for help.

From that little snip, I don't think the seriousness of HD was even reconized by others, but more that the POTUS didn't know Davy Crockett wore a coonskin and not a beaver hat. Not to mention the slurred and akwardness of speak proably was felt to be more of a TN sterotype and not an afflection

Joe/NC

PS...maybe my thoughs are sqwed as I try to watch and reply as I feed the wife and keep her frrom falling out of her chair

I just watched the video, and he seemed like such a nice guy, and he went right to the top I had no problem with Obama. I don't feel Obama was being rude to him, I liked how he made fun just a little, it felt inclusive, having fun with him, not at him, and that helps a person feel included and normal. Anyways, back to the subject. I watched the video, then I read some of the comments below the video. A relative of his started posting about how he his mom had hd, but that he can't get social security because he can't afford to be tested. Then a few minutes later, she said he has been tested, and was negative, but has a rare form of ms. And another relative came on too, and then a friend, and they all seemed to not know that he has ms, not hd, and he seemed to think he has hd. So it's hard to tell, if he tested negative, but still thinks he has hd, but really has ms, or if he has even tested for hd, because others say he can't afford to test. So it's actually a very confusing story. His mom definitely had hd though. He seemed like such a nice guy, it will be nice to hear if his story does get sorted out, and he does get some help.

Thanks for the post. I agree with Barb. It is a bit confusing.

Thinking about all the post we see here. If Mr. Crockett thinks he has HD and it's in his family then he has reason to think it could be HD in my opinion. I'm not sure about all of the post on facebook or what they mean but I congratulate him for standing and asking. There could be any number of reasons for his condition of course.

As far as his delivery. Everyone isn't as educated or refined in many areas as others may be. That doesn't make him any less important in my book. I will bet he could teach all of us something about something we don't know. We all have something to contribute.

Coon skin or beaver? I watched the show every time it came on. Heck, that was prime time. I don't remember if it was Coon skin or beaver either (poet and didn't know it).

It will be interesting to hear if Obama follows through of course and I hope he does.

I did take offense to the remark about paying for this guys disability and the connection to drugs and his speech. If the guy worked, HE paid into the same system the poster is eligible for as well. I paid for my disability and would gladly trade it for the life I had before HD.

Respectfully,

Mike

Maybe a formatted response, but Hoyer's staff took time to research the HD parity act and where it was in the system. highlight is mine.

"Should legislation regarding your concerns be reintroduced in the 114th Congress or be considered by the full House of Representatives, you may be assured that I will keep your views in mind. I hope you will continue to be in contact regarding the many issues that may be considered by the U.S. House of Representatives."