Friday, September 30, 2011
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
505 Eighth Avenue, Suite 902
New York, NY 10018
God- help me to accept the things i can not changer. AND THE COURAGE to change the things I can! amen
at 9:55 PM
So where to go from here??
Keep raising awareness.. I cant believe that a dr actually thought that Huntington's Chorea and Huntington's Disease were different and one was genetically passed on and the other was not!! wow..
WE NEED MORE PEOPLE SPEAKING OUT!
DO NOT BE ASHAMED.. it makes me so sad when i hear people say well we didn't talk about cause we just hid from it.. how lonely and scary.. for the hd positive and the other family members..
Kate says when the time comes she would like to place in a "home".. but there is no way in hell that i will bring her some where far away.. actually i don't think i could be strong enough to bring her any where.. Those family that do fine placement. they are brave, the choices they make are much harder than what anyone knows!.. me welll not so much..
Also found out to that if a child is disable before 18 than they collect off the parents social security.. Check this out guys it may bring so much needed extra cash to you instead of the ssi amount.
23Then shalt thou walk in thy way safely, and thy foot shall not stumble. 24When thou liest down, thou shalt not be afraid: yea, thou shalt lie down, and thy sleep shall be sweet. 25Be not afraid of sudden fear, neither of the desolation of the wicked, when it cometh
at 7:06 AM