Something that I believe all posters on this thread have overlooked is the role that HDSA plays in having a number of Centers of Excellence located in various states. True, not every state has a center, and some centers are better than others. On the other hand, without the HDSA providing grants of about $50,000 per center, they would not exist. Everyone would be forced to rely upon a local physician, who may or may not know much about HD. Worse, the level of counseling and advice could be notoriously poor and ill advised. That still happens today when some folks go elsewhere for a diagnosis, and then get told "bad" information about HD and its effects. I would suggest that these centers are one way HDSA has a direct impact in helping HD individuals and their families.

Likewise their emphasis upon support groups is still another way that HDSA helps families. True, a support group does not offer financial support to a family in need, but it gives other types of support, and that can and does entail helping someone get on SSDI.

HDSA does have its problems, and I don't mean to defend the organization blindly and completely. But I hate to see it bashed for not providing financial support to individuals - for if it were to add that to its efforts, I am willing to bet that in a year or two, they would be bankrupt, and in short order there woujld be few Centers of Excellence, little genetic counseling, and a dearth of support groups specializing in HD nationwide. There is certainly room for improvement and advancement - but right now, that is all the country has.

For the record, I did say nor mean to imply I was looking for financial support. for that part, I have not pursued any government assistance. Not to say that before this journey is over I, we, or the wife will probably be distitute and require such.

there is not a COE near for me to benifit from thier resources nor was I aware that HDSA financial supported the COEs

HDSA cut their funding to COE's significantly this year. I received a fundraising appeal from our COE in March explaining these cuts.

I have also heard that the COE at Emory University in Atlanta has closed due to a lack of funding. This was the first COE established in the U.S.



Edited 2 time(s). Last edit at 07/20/2015 05:04AM by howard.

HDSA bashing?

Some of us, as in this thread call them out. What I read, there are plenty of us who are fed up with a "premier" organization that uses funds raised by the community for research - as advocated on their web site - to pay down debt ; fed up with an premier organization that changes focus, depending on how the wind blows; fed up when it brags about their network of COE's and social workers then cuts funding - probably the one support resource that has a direct impact on our community.

HDSA bashing ?

JFB, understood.

Howard, they also raised funding for some, or initiated funding to new medical centers. Some centers did receive cuts. Here in Washington, the COE received an increase to expand its support to a group in Oregon, where there is not currently a COE.

Normzach, you are of course correct that there are people who are fed up with certain policies, practices, and personnel in HDSA. One thing that has not been mentioned, though, is the cause of that debt which being paid down. How was that money spent? (I don't know the answer to the question, but I have my guess, and it has to do with funding of COEs.) As to flexibilty in focus depending upon the blowing wind, some might view that as a positive, provided the overall focus remains on HD.

The bottom line is that there is only so many dollars which the organization has to spend. We would all love it if there were many more dollars, but there isn't. Personally, I question placing any emphasis upon research by HDSA, especially since CHDI is funding research at such a high level currently. There is no way that HDSA can compete financially with CHDI - so why bother? But that is my bias - and I doubt if it is shared by many.

Lastly, I used the term "bashing" because I read no acknowledgment of the positives that the organization also represents. There was no mention of COEs and their creation, there was no mention of funding of them, and at least one reader was unaware of that role played by the HDSA. Likewise, its role re support groups was ignored or not mentioned. Calling out and holding an organization responsible is appropriate in my book, but one also has to acknowledge the positives as well as the negatives in doing such. If only negatives are complained about, then it becomes bashing in my book.

~Rev Jim

Here is something I can beat my chest about - not in pride but in frustration, and I seldom see much written about this problem within the HD community. We all talk about the need for research to find effective treatments and a cure for HD. The corrollary is that with increased research, there is also an increased need for research subjects - and the available pool of such subjects is numerically limited in the US and in the world.

Recently, a new drug trial which holds promise was cancelled in Seattle. The reason - no suitable research subjects volunteered for the study! Maybe we are just an anomoly, but I have to wonder. We maybe have 5 to 10% of our HD population in trials. Most of these people are active in support groups or are seen by one of several physicians. Where is the other 90%? We in the chapter do not know. The fact is that Washington state statistically should have about 800-900 HD positive individuals, but only about 100 of them attend support groups - which is the way the chapter knows about them. Our educational events have an attendance of about 100-125 as well, and most of these people we know. The other 700-800 remain a challenge - to get them involved in support groups (if they want), to volunteer for research (critical if there is going to be any progress in treatment), or to just be known.

Let's face it, research takes more than money. It takes scientists committed to finding a cure and treatment, and it takes patients will to aid others and themselves by volunteering for studies. Right now we are doing good with the money and the scientists, but not so good with study volunteers. We need to do better. Any thoughts on how this volunteer population can be better cultivated and encouraged? Even more so, how to better identify them?

~RevJim

Actually trials are talked about on this forum all the time. Most people with hd go to a neuro at a coe, here in Canada we all go to the hd clinics, that are also sponsored by hd society of Canada. You don't know why there aren't enough people for the trials. Not knowing about the trials is a very tiny percentage, because people are told about trials when they go into their hd clinic. You don't understand. Many many of the hd trials, people with hd Do Not Qualify. For instance, there is an upcoming trial right now in Canada and Europe, you have to have visible chorea for the trial, I don't have chorea. There are many trials where people cannot be on a mood stabilizer. Many many people with hd, in fact most people with hd, are on mood stabilizers. It is because many do not qualify. Some people here are frustrated with the hdsa, and they have been putting out some interesting statistics. Did the thread have a slightly bashing tone? Yes, but nothing wrong with that, if others come along and give some positive info, which a couple of people had done, you let people know that their coe's are paid for by the hdsa, something it sounds like most people didn't know, so, that was good, but, you also are giving your positive info in an accusatory way So no big deal, give other info, but nobody needs to bash each other here either You did bring up some good info, which I also found interesting, along with what others have brought up too, I appreciate the info that everyone has given, and its good to know where money is going, and to question it. I see you're new to the forum, how are you connected by hd? Welcome

Barb,

Rev Jim is an old timer. I remember him from the Lighthouse forum.

Will

Thank you for your response Barb. Back in 1961 when I was a sophomore in high school, my girlfriend at the time informed me that her grandmother was recently diagnosed as having Huntington's Disease. Ever since then I have read articles on Huntington's Disease when I ran across them in the psychological literature. (I majored in psych for my undergrad degree, and then pursued a Ph.D. in a psych related field.) In college, she and I went our separate ways, married others, had families, etc. HD remained close to my heart, though. Around 2005-6, I started to become active with HDSA. in NY, where I lived. My former girlfriend and I are back together as senior citizens and now living on the West Coast about 50 miles south of BC. I've served as President of the former Northwest Chapter for three years, and now serve as secretary to the board of what is now known as the Washington State Chapter. She tested negative for HD, while one of her brothers has died from related symptoms of HD. Another brother is in the mid-stage of it, and her sister is in the end stage of the disease. She has another brother who has tested negative, and one brother has not been tested.

I've certainly had my disagreements with HDSA and its policies - most of which I've tried to keep private.

Re research subjects, down here in the states, not all COE physicians place emphasis in participating in research or educate their patients about ongoing research. Worse, if one believes the statistics about the expected number of HD patients in the overall population, many of these HD folk have not been seen by any COEs anywhere. Here in Washington, for example, one would expect around 800-900 people to be suffering from HD. The actual number of people seen at least annually at the COE, or by one of several other physicians specializing in HD, is far less, by an order of magnitude of 1 out of 4. Those "missing" 600 or so patients are needed to see if they would qualify for any of the trials being conducted.

Lastly, Will, you have a fantastic memory! I did indeed post on the Lighthouse forum - not much and not for long, but I did have an appearance there. :-)

Which raises another question, why are there are no up to date and accurate numbers for prevalence and incidence of HD in United States? It seems to me if one is the self proclaimed premier non profit and leader in HD research it would imperative to know the magnitude of the problem, how many and and how often. Which, if known, will equate to dollars and results. Which will result in better quality of life for pHDs.

back in the early 80's, prior to internet, extensive data banks and facebook;

a young Doctor was able to locate my wife while we were traveling the US for work to get a blood sample for the research trying to identify the gene. back then, someone was tracking HD families

At the conference, one of the younger two doctors that are working with HD on a daily basis was asked that question during a Q/A session. They said that all of the incidence and prevalence numbers are very much incorrect and that they have current medical data that proves it. But when he brought this to the people in the government that provides them funding, and basically they were told that having the numbers changed would do nothing to get better funding. And it is also a very complicated process to get those numbers changed. I think they were told by government officials that it is not even worth going through the whole process just to update that info, as it would have no real effect on anything substantive. This Q/A was recorded at the conference, and should be on the HDSA website. Sorry I have HD and cannot remember the exact name of the exact speech session. But it had the two young doctors as the key speakers. And I am to lazy to look it up for you. HAHA.

Here in british Columbia, our hd clinic knows our numbers, because everyone with hd in bc goes to the clinic for genetic testing, and for yearly exams. Maybe because of our medical system, we get most of the patients into the clinic. They were able to tell me one day on the phone exactly what the statistics are for bc. They said the rest of Canada is 1 in 10,000, but here in bc it's 1 in 6,000. I asked how they know that, they said they have the number of hd patients in their files, and divide that into the population of bc, so it's easy here to know how many have hd, and who they are, and how to contact them

Barb, some of us in the States are jealous of your system in Canada, and not just because of HD related care! My girlfiend's brother takes part in research being conducted by the Vancouver COE and has done so for many years.

I knew the higher incidence rate of HD in BC - but thought (erroneously) that that rate of 1 in 6000 applied throughout Canada.

Jim

has any one else recieved an email from "the premier nonprofit organization..." requesting to tell them what you value most from HDSA?
here is a link to the survey if intersted
[www.surveymonkey.com]

I started to fill it out but the survey has a glitch and not let me choose the same reply twice

typically, some one did not do their home work. back in my day it was called attention to detail.

I went back and what they want is a reply that rates 6 services from 1 to 6 , not a rating for a service (if that makes sense). that is how the other survey groups are also.

Given I have never experanced any of the services mentioned in my 30 plus years of dealing with HD, I couldn't do the survey and replied back to HDSA the same.

The only thing I did see a reconized is the "Drs guide to HD"