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Review for VHL Alliance, Boston, MA, USA

Rating: 5 stars  

I was diagnosed with VHL in 2007, and was terrified. I turned to the internet and found the VHL Family Alliance. I ordered the handbook. I joined The knowledge that I gained from the handbook and advice from Joyce Graff, saved my life. I learned about when to have scans, what to expect, how to find great doctors and the courage to go on. Just knowing there are other people out there with the same rare disease is so comforting and powerful. I am now involved in 4 studies at NIH and have the best medical team in the country! I don't know where I would be today, in 2012, without the support of the VHL Family Alliance. I hate to think about that..............

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Role:  General Member of the Public

Review for VHL Alliance, Boston, MA, USA

Rating: 5 stars  

I am 51 years old. I was diagnosed with VHL only 3 years ago. As VHL is usually and inherited genetic disease, it is rare to be diagnosed at such a late age. I had already had 2 major surgeries with both adrenal glands and part of my pancreas removed. Somehow, no doctor had put 2 and 2 together to come up with correct diagnosis until 3 years ago. I was devastated to learn I had VHL. I am a Registered Dietitian and have worked in hospitals my entire life. I have seen the results of the type of tumors that folks with VHL get (renal cancer, ending up on dialysis; ocular tumors, ending up blind, pancreatic cancer, death or type 1 diabetes and malabsorption problems; spinal tumors, paralysis), and did not know where to turn. My husband and I had moved to a town with 6,000 people from Los Angeles and I already felt the impact of rural medical care. I eventually googled VHL and found the VHL Family Alliance Web Site and the support group. I ordered the VHL handbook. I asked questions. I began a dialogue with Joyce Graff, the Director. I started having the necessary medical scans. Many tumors were found on my pancreas, on my spine and in my lungs. The docs here in Central Oregon were stumped and offered advice that could have killed me. Through contacts made within this group, I was accepted for medical care at the National Institutes of Health in Bethesda, MD, and now am receiving the best medical care in the world. Without the VHL Family Alliance and, I may be dead, or severly handicapped. I have met many people who also have this disease. We talk, laugh, and cry together. I have been able to help several folks with nutrition problems through this site. It is a Miracle from God and Joyce Graff is an Angel!!!!!

I've personally experienced the results of this organization in...

I've personally experienced the results of this organization by gained knowledge about VHL and how to care for myself, what scans are necessary on a yearly basis, and where to go for proper medical care. I have been emotionally supported when distraught.

If I had to make changes to this organization, I would...

I wish I were a millionaire so I could give all my money to this organization to make it more well known so others with VHL could get help. I would also give all my money for VHL research to help cure/treat this and other cancer illness.

What I've enjoyed the most about my experience with this nonprofit is...

the knowledge I have gained and the emotional support I have received. I never would have found out about the National Institutes of Health or been able to receive the best medical care in the world.

The kinds of staff and volunteers that I met were...

kind, gentle, knowledgable, considerate, ever vigilante, and showed grit and determination when needed.

If this organization had 10 million bucks, it could...

help everyone with VHL get the medical care they need, educate doctors world wide to STOP CONTRAINDICATED PROCEDURES THAT GO ON ALL THE TIME DUE TO LACK OF KNOWLEDGE ABOUT THIS DISEASE IN THE GENERAL MEDICAL FIELD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Ways to make it better...

everyone in the world needs to know that this organization exsists!!! They need more money.

In my opinion, the biggest challenges facing this organization are...

needs more money for handbook updates, research and letting the public know they exsist. The average doctor needs to be educated about how to treat this disease so harmful medical treatments can be stopped!!

One thing I'd also say is that...

The VHL Alliance saved my life. What more could a person say?????????????????

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?


Role:  Client Served & I received knowledge about VHL that saved my life. I gained support, made friends and no longer feel alone with this terrible life changing disease.