So the HDSA collects money from the community in walks and other fundraising events, said that the money goes to research. What little of the money goes to the research part, but now with CHID doing the research... what does the HDSA do for people like us who are in need? When are they going to tell us what they are doing for their "families", the people who are suffering now?
The 7% allocated to research in the 2009-2010 Annual Report from the HS..which means out of every $100 sent to hdsa will only $7 be used for research and the $93 go to other parts.why such a low amount for research? This that not the HDSA purpose. This is what we need for a cure. Also if everyone says they want their full $100 donated going to research will that be done? Won't that then exceed the 7% allocation. What does hdsa do then??
They have lied to the community since 2006 and state that they do give most of the money to research.But their numbers show different!
ANger.. yep .. it is funny how money and loved ones can cause that so easily.. I cant understand why more money is not going in to research??
Tears for the people who we have lost!! and for those who cant see to see it from our view!! tears
my fund raising efforts are for the JHDI and faceless no more...
this their own report.. check out the pie chart : http://www.hdsa.org/images/content/1/5/15081.pdf
call them 1-800-345-HDSA (4372)or 212 242 1968
write them
National Office
505 Eighth Avenue, Suite 902
New York, NY 10018
212 242-1968
hdsainfo@hdsa.org
God- help me to accept the things i can not changer. AND THE COURAGE to change the things I can! amen
Great post. Not only will they see a Snail Mail letter from me, but they also will be getting a request for their 2010 990S, the legal document they have to file with the US Government.
ReplyDeletePaul on their website u can see it on there... That why i posted.. it make me upset!
ReplyDeleteFirst, if you look at the pie chart, over $1.9 million was given for research, much more than 7%. The 7% refers to the holding of HDSA.
ReplyDeleteSecond, get more involved in HDSA and kill them with kindness. It is the only major advocacy, education and awareness organization in the US right now. Yes, there are others, but they do not have the same exposure.
Third, much of the research dollars go to support the centers of excellence that in turn support families.
Fourth, CHDI has one way of doing things that does not necessarily help everyone do research in a way that is best for all.
Doc4hd-
ReplyDeletethe 7% is the total amount that is used for research from all the monies collected.
My point is that.. our families need more help. and the research percentage should be be at least 50%....
I travel 6 hr one way to a Center of Excellence and I pay for the gas,food and motel..NO ONE ELSE DOES OR HELPS..
I am involved with the HDSA.. and i know that they offer scholarships for the convention. which is a blessing to many families. I am thankful for that.
I totally are with the kindness.. but i also think that when we ( the people that the Hdsa) ask questions that they should be answered..
after all we are the ones who are out here fighting!
HDSA...does not claim that all the money donated through fundraising events will go to research. The money raised in the field goes towards HDSA's entire mission which includes research. This past year HDSA had to catch up on their payments for past research grants so no new grants were given but in the coming years they will be funding new research grants again. Keep in mind the researchers are still working on finding a cure for HD. In the mean time HDSA is providing support groups and Centers of excellence to provide care for patients currently affected by HD and their families. There are social workers throughout the country. There are education events taking place all over the country to help educate families and Dr. about HD. HDSA is advocating for the HD parity act. Get involved with your local chapter or affiliate If you do not have one contact on of the filed staff in your area and see how you can help. HDSA is a volunteer organization.
ReplyDeleteAnonymous said... and i again respond. We are the ones helping to raise the money for research! and when we are told the money goes to research that where it should go!!
ReplyDeleteand yes they do tell us it goes to fundraising..
mmm it funny that so many people read this..
ReplyDeleteIf you send money to HDSA and you say it is to go to research they will ear mark it for research and put in aside to fund research. That is called a restricted gift. I am just trying to get facts right so everyone is on the same page. My family is affected by HD too so we are all in this together. We need both care and research to be happening out in our community. We get calls everyday from families needing help and it is so wonderful that we have a social worker to answer the calls and help the families.
ReplyDeleteOur family is also affect..the money raised for research should be put toward research..
ReplyDeleteWe have families in need also..our social work tries to help also .. we take care of three states.. and laws are different in each one. so trying to cover all 3 is impossible..
I agree we all need to come together.. and part of that is the research.. for both Adult and Juvenile forms.. they say the juvenile so so rare.. but in my daughters family alone there has been 7 cases.. and all in the 3 and 4 generation.. the rest of the kids have not been tested or have not the gene.. it seems not so rare to us.. it has shown up more than the adult form..
So yes it make me upset when we are told that there is no money for juvenile research on the federal level. University Of Iowa has started a juvenile research.. Thank God.. but it should have been started 10 years ago at least. and it is hard on people to give when so little of the money is going toward finding a treatment..We keep hearing about treatment and than a time frame of 5 to 10 years till a cure.. but nothing comes.. it is a struggle and heartbreaking.. for everyone involved.
I do help and do raise money , but it is still frustrating when I cant afford to being my daughter the 5 hours to Iowa city, I aways find way because i believe She needs it.. but i ma blessed to have a large family that help me.. were is the funds to help families again?? and what exactly does the HDSA do to help those families?
Can they help them by sending funds for gas or nights lodging or even a supper?
the basic needs have to be meet before we can help our families get in research...