June 7, 2010
When I was in the 8th grade, my cousin died from this disorder. At the time, we thought it was something else. After my cousin passed away, NIH looked into her records and found that she was indeed a victim of VHL. I was genetically tested and we found that myself, my mother, my brother, my two aunts, and another cousin all had VHL to some degree. We would go to NIH to get testing done through a study and for a long time I felt like an outsider. In being connected with the VHL Family Alliance I have found a voice and a support network to be connected to others connected to VHL. It is empowering enough just to be able to communicate with others and read their stories. This organization also validates the seriousness of this illness to the general public, which can be difficult with rare diseases. Through the VHLFA there has been a group of over 2,000 people that have gathered on facebook to provide information and support to others. Day after day I see posts from people who felt utterly alone in their fight and now express their undying gratitude for what they've gained through the VHLFA.
I've personally experienced the results of this organization in...
The information that the VHLFA has provided me is invaluable and I have gained an immense amount of confidence in my approach to my doctors regarding VHL. I feel confident in pushing my doctors to seriously review screening test results.
What I've enjoyed the most about my experience with this nonprofit is...
The wealth of understandable information and the opportunity to connect with others involved with VHL.
The kinds of staff and volunteers that I met were...
They are transparently invested in their cause. There is never any doubt that people involved with this organization want to do whatever they can to provide help to those with VHL and their families.
If this organization had 10 million bucks, it could...
Provide treatment and screening to those who are desperate and more easily direct individuals to resources they need.
How frequently have you been involved with the organization?
About once a year
When was your last experience with this nonprofit?
General Member of the Public & I am an individual with VHL and multiple family members with VHL.