Has anyone else noticed HDSA is touting a "top rating" from CharityWatch? A check of CharityWatch shows HDSA with only a B+ rating and the rating by Charity Navigator is still only three stars out of four or a B. Goes along with their self proclaimed status as the premier non-profit in HD research and the world’s leader in improving the lives of everyone affected by HD. Guess their wby normzach - Huntington's Disease Support Center
Following and participating in threads discussing care giving for persons with Huntington’s Disease for some time, it is evident, to me, there is one common issue we all deal with – lack of knowledge and understanding of HD at the local level, the primary care provider. In a recent thread, a care giver pretty much summarized what we face - “Do others find the "let's fit HD" in &quby normzach - Huntington's Disease Support Center
HDSA and their care caregivers survey - you got your ears on???by normzach - Huntington's Disease Support Center
Will, Appears two surveys may well be one. Jean Logan sent out an alert, including a letter/notice from HDSA that HDSA had a grant to develop/prepare a DIY HD Caregivers Guide. The HDSA letter had links that went to three flavors of a survey gathering data for the Guide. On the Ivory Tower site, under research down to surveys, Jamie Graziano and her graduate research study is discussed. Noby normzach - Huntington's Disease Support Center
somewhere in my feeble mind, i think there are two surveys out there on care giving - one to support research being done by a graduate student which, based on a standardized approach to assess stress and the like, asked for a bunch of background info two the one from the ivory tower as part of an effort to develop/prepare a how to for HD communityby normzach - Huntington's Disease Support Center
Ah well - guess care givers will have to continue to do what they do, provide best quality of life for their pHDs they can without guidance or interference from the ivory towerby normzach - Huntington's Disease Support Center
yeah Will i be okay just want to see where the ivory tower will go with this. the question in my mind, will they invent something new, rehash of what has been done by other non-profits or is this another misguided me too effort. in any case it is worth the ten minutes effort to support what ever they are trying to do. who knows maybe they will come up with a silver pill we can take in theby normzach - Huntington's Disease Support Center
HDSA has an initiative - a survey to help develop a caregivers guide. Interesting approach - three surveys: one each for early. mid and late stages. From the south of Maryland, we answered the late stage survey: questions are first asked from the pHD perspective, then respondents are asked to discuss "strategies" and then use of HDSA products/services. Go to the HDSA web site andby normzach - Huntington's Disease Support Center
The question is, does the Huntington’s Disease Society of America track diagnoses of Huntington’s in the United States as The Scottish Huntington’s Association is doing in Scotland?by normzach - Huntington's Disease Support Center
Griz, To the extent we can, we donate directly to the Baltimore Huntington's Disease Center at John Hopkins, designated as an COE by HDSA. That way donations go to an activity that directly supports our family and the local HD community without being diluted by HDSA's high overhead tariff. Look on the web site for the medical center/hospital where your state COE resides, you should findby normzach - Huntington's Disease Support Center
Found this on Face Book. Good resource. Fred Lothropby normzach - Huntington's Disease Support Center
HDSA.org has been reorg'ed !!!!!!!!! Haven't look at it in depth. but it is more busier, definitely not pHD friendly,; a focus on donating; available resources needs to be vetted; publications should be scrubbed to ensure currency and accuracy. My view of the HD world is parochial and limited, maybe a couple of old hands can look at it objectively and provide comments to the ivory tower,by normzach - Huntington's Disease Support Center
Right, Last year, I ran this route with VA for Ms. America. Her disability claim was supported by diagnosis and clinical observations/information from John Hopkins, a fourteen year medical history from primary care provider and copies of hospital medical records from falls. DENIED - service records did not show/support HD diagnosis or symptoms In there lies the key/crux of the matterby normzach - Huntington's Disease Support Center
We use MedicAlert bracelets - Linda for HD and the old man for heart condition. Based on our input MedicAlert has medical histories, meds, copies of medical directives, emergency contacts, with an 800 number for respondents to call. No fumbling for wallets, purses or lost cards. For example, Linda's bracelet has "Huntington's Disease Call Immediately" with the 800 number engraved on iby normzach - Huntington's Disease Support Center
Amen Howard. You are not alone. HDSA receives no financial support from our family. The extent we can, our efforts are focused on the Baltimore HD Center at John Hopkins so we can support people who support us. We make use of HDSA publications that are current, which we pay for, to help educate care providers and as reference for presentations we give. Have been accused of HDSA bashinby normzach - Huntington's Disease Support Center
Unfortunately you are not alone. Other COE's have had funding cut impacting the HD community and access to needed support resources such as HD outpatient clinics and HD experienced and skilled social workers. Birmingham, Baltimore and, I think, Seattle are among them. A quote from the current HDSA five year plan is appropriate . Page 4, Stated goal - "A commitment to Community Service. --- Pby normzach - Huntington's Disease Support Center
You are not alone - HDSA funding to other COE's has been cut, Birmingham and Baltimore and, I think, Washington/Seattle are among them. In Baltimore the social worker had her hours reduced some time ago. To quote HDSA and a statement in their current five year plan. Page 4, Stated Goal: "A Commitment to Community Service. Programs like our network of social workers and support groupsby normzach - Huntington's Disease Support Center
Steve, Much more better - able to read without all the =,%,$ interference Thanks, Fredby normzach - Huntington's Disease Support Center
After reading a recent thread on the HUNT-DISC forum, I went to Jimmy Pollard's "Hurry Up and Wait". Jimmy dedicates his book to "the centers of excellence." Then goes on -"There are thousands of them across my United States and thousands more around the world. They are in kitchens and living rooms where wives, husbands, sons, daughters, parents, grandparents and frby normzach - Huntington's Disease Support Center
Good question. It all stems from the top - BOD and management. Over the years, have seen HDSA bounce around from "cure" to "care" to "family" themes without any focus or accomplishment.The corporate culture is evidenced when they cut funding to COE's rather reducing expenses. Their Christmas card spoke volumes about HDSA espousing family values with a formal poby normzach - Huntington's Disease Support Center
Ms. America’s claim for VA compensation/ disability – denied. Service medical records did not support HD occurred in or caused by service. Lesson learned: It ain't easy. Get help. is a good place to start. It is a listing of veterans state departments/agencies where a nearby VA certified veteran service officer (VSO) can be found. Key is VA certified VSO. Some veterans organizations: VFby normzach - Huntington's Disease Support Center
Yup. Definitely an uncomfortable and unpleasant issue a while ago. Folks at Baltimore HD Center recommended a mild laxative. We use MiraLax which is blended into Ms. America's daily protein laden milk shake. It works . As Marsha noted, routine helps. All concerned more happy and less bloated Wouldn't it great if every HD side effect could be as easily addressed. "Take a pill, yby normzach - Huntington's Disease Support Center
Old family cure for colds and other stuff. two martinis, stirred not shaken, during a long hot soak then bed rest. get well Marshaby normzach - Huntington's Disease Support Center
like will, mail boxes are filled with solicitations and some greetings sincere, some are not, some deserving, most are not. the one from hdsa just did not ring true to me, maybe it was the be healthy thing and the absence of empathy for pHDs and how they feel.by normzach - Huntington's Disease Support Center
wonder if anyone received the new years message from hdsa. wonder what, if any, reaction to the use of the message to solicit funds from HD families. from the south of Maryland Fred Lothropby normzach - Huntington's Disease Support Center
don't know the answer Lizzieann- but we will find out. Will be interesting to see how they rule, given the fact after review of her medical records and supporting documentation, VA declared Linda catastrophic disabled. Her date of service, 1960-1965, diagnosed 2000. The VA schedule §4.124a Schedule of ratings—neurological conditions and convulsive disorders, dated Apr '14 i think,by normzach - Huntington's Disease Support Center
Was wondering if there are vets or care givers in this group who have worked with the VA to get benefits based on a diagnosis of HD. Have not seen anything from the ivory tower or anywhere else,for that matter, with guidance/suggestions on how to crack the VA/HD nut. Have met with some success in pushing the HD issue for Ms. America – approval for medical benefits; inclusion in the VA Homeby normzach - Huntington's Disease Support Center
The VA compares HD to Sydenham’s chorea for disability compensation. Which is good news. Suggest any application for compensation include supporting documentation from medical provider with words, from the schedule, to describe symptoms, treatment, test, etc. Google veterans administration Huntington’s disease and 4.12a is the first hit. §4.124a Schedule of ratings—neurological condiby normzach - Huntington's Disease Support Center
This was a front page item in this mornings's Washington Post. Given the present political environment, it could be an item in the run up to the midterms and 2016 elections. Question is how to take advantage of it.by normzach - Huntington's Disease Support Center
A clarification --- To my knowledge, HDSA has not committed not will it commit to supporting the HD Family Advocates in Orlando. My "no brainer" should be taken in the contest of "wouldn't be lovely if HDSA ------" Fred Lothropby normzach - Huntington's Disease Support Center