My Nonprofit Reviews
vhl-daughter
Review for VHL Alliance, Boston, MA, USA
My mother seemed to show symptoms of BSE ("Mad cow disease") when she was 69. Eventually - after many false starts - we learned she had a cerelbral haemangioblastoma. This has been repeat removed twice in two operations plus a VP shunt as a result of trauma received in surgery. (I think!). She also has monitoring whch has revealed a number of kidney lesions and hencehas a VHL diagnosis. The VHL alliance website has been very useful to obtain information - alternative ideas for treatment -help and guidance and support for my mother and for me and my family as carers and possible VHL patients .
More Feedback
I've personally experienced the results of this organization in...
See above.
If I had to make changes to this organization, I would...
None
What I've enjoyed the most about my experience with this nonprofit is...
A community of knowledge, help and support.
The kinds of staff and volunteers that I met were...
On line - polite and informative
If this organization had 10 million bucks, it could...
Disseminate information Seek cures and new treatments
Ways to make it better...
We didn't have the condition in the first place...
In my opinion, the biggest challenges facing this organization are...
Inadequate funding!
How frequently have you been involved with the organization?
About every month
When was your last experience with this nonprofit?
2010
