So what a day.. and apparently I stirred the pot with my fundraising lies?? post .. I am soo sorry if I upset anyone.. Our Goals is to raise awareness and money for a treatment for JDH and HD..
I totally appreciate HDSA and all they do for awareness.. My problems is with the amounts..and i understand that u can earmark money for research.. which is great.. I guess I look at that the number one thing that should be done with the moneys raised is for research.. the more money the better the research.. 2 we should be taking care of our families on a basic level.. Asking them if the need food.. gas to get to dr's helping them find a lawyer when ssi or ss is denied.. yes I believe it can be done.. we love each other can Know what each of us go through with our loved ones and with ourselves..
I know that I have been blessed that my family has helped me to get Kate to and from Iowa city.. which 5 hours one way.. but i also have read and know of parents that cant afford to bring their kids to center of excellence because of cost of travel and lodging.. no to mention they cant afford the time off of work.. Why can we help them out.. to me that is more important than paying for t shirts to be given out at our walks..
I know it seems i am upset.. but i am not.. I just feel that we need to really look and ask our families what they need!