This is the first year I have not gone to the HDSA walk in Indiana put on by the StopHD group.

This year StopHD is reporting they raised $24K for the walk. A huge accomplishment for a grassroots effort.

So why is this big news? Besides the amount of money they raised? Because three of the members that run StopHD worked on the Indiana State board. The board that quit in unison, the board that has been accused of turning its back on the HD community not only in Indiana but across the country.

If only everyone turned their backs on the HD community so well.
Way to go StopHD!

Maria,

That is a great accomplishment! Often, it seems that politics and personalities get in the way of what we are all striving for. Our focus needs to remain on HD and put the other stuff aside. How come you were unable to attend this year?

Carla

Carla I did not walk this year because personally I choose not to support HDSA since they choose to not support families. I can not send money to an organization and help pay for the employment of a social worker who broke two of the National Association of Social Workers ethics. HDSA Indiana and National are fine with this social workers job performance and feel he is more valuable than not.

So instead all of my money and fund raising efforts will go to Huntington's Study Group or Heredity Disease Foundation.