VHL FAMILY ALLIANCE
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In July 2008, I was rushed to the Emergency Room thinking that I was having a stroke. My entire right side was numbed and my right leg began to drag. They took CT scans but the emergency doctor could not give us any results. He was waiting for a Neurologist. It turns out I had numerous hemangioblastomas in my cerebellum and spinal cord. I was admitted to the hospital and transferred to Barrow Neurological Institute ICU about 30 miles from the ER. My husband was told I needed an emergency surgery. Days later, when I tried to begin to walk we noticed that I was having issues. This was the scariest event we had ever experienced. My husband started researched Von Hippel Lindau Syndrome and came across the Von Hippel Lindau Family Alliance. The information was in plain English. A month later, I was at home and began to contact them. They enlighten me and brought some peace of mind; and helped me ask the right questions. Unfortunately, I live across the United States in the West Coast, so I do not have VHL Centers in my local area. Needless to say, I had several more surgeries; many were out of state. Joyce Graff is an inspiration which gives me the courage to be a "Powerful Patient". VHLFA website, Inspire Support Group, Powerful Patient Talk Radio, Hotline, newsletters and the VHLFA Handbook (they added a new children Handbook) are powerful resources that I have used. In addition, they have partnered with The National Disease Research Interchange to continue the research to help us find a cure in the future. Together by donating tissue from surgery, we can help find a cure for the next generation.
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I've personally experienced the results of this organization in...
The VHLFA non-profit organization has helped our family be informed and take all necessary steps for genetic tests. I use their resources and the "Inspire" Support Group extensively. Thanks to VHLFA network, I was referred to a pancreatic doctor in my local area that does research and understands my VHL diagnosis. VHLFA is a God-send; I value their commitment and dedication to us. The VHLFA are dedicated to improving diagnosis, treatment, and quality of life for individuals and families affected by Von Hippel-Lindau disease.
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What I've enjoyed the most about my experience with this nonprofit is...
their committment and dedication to VHL patients and caregivers.
The kinds of staff and volunteers that I met were...
inspiring. They are warm and care. It is enlightening to see so many volunteers joing together to find a cure.
If this organization had 10 million bucks, it could...
reach more people and do more research work.
How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
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 .
The Great!
I've personally experienced the results of this organization in...
See above.
Ways to make it better...
If I had to make changes to this organization, I would...
None
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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
I was first diagnosed with VHL in 1996 and, being only 22 at the time, came as a huge hit to my world. After searching through research reports, combing the library and talking with my doctors to learn more, I came across the VHL Family Alliance. It was a breath of fresh air - the resources for patients, families and the medical community, as well as supporters at large are phenomenal! The active pursuit of funding and promoting research to find a cure and increase the quality of life of patients is extraordinary; and the network of families and medical professionals is highly valuable. All of these factors, combined with a desire to give back to an organization that has given me so much drove me to get involved. I have always been proud to be a part of such a great organization and will long continue to work to make life better for patients and families by supporting, promoting and being involved in the VHL Family Alliance.
The Great!
I've personally experienced the results of this organization in...
education and outreach resources, promotion of research and being involved as a volunteer leader, both on a local and national level.
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How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
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.
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The Great!
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.
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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?
2010
My story....It all began with a trip to the optometrist. I needed new contact lenses and it was time for my annual exam. No big deal. I had been going to the eye doctor every year for many years. Well this time was different; a mass was discovered. I had a hemengioma on my optic nerve. Doctors really didn't know what to do for me. Very few doctors have ever seen this before. Plus, the doctors that did have experience with this, couldn't offer any real treatment options. They just "watched" me, for years, and the tumor grew. Eventually I was sent to The National Eye Institute to enter a study trial. They confirmed a positive VHL diagnosis through DNA testing. Shortly after, I learned (through DNA) that I had passed the gene on to my child. NIH/NEI connected me to the Family Alliance. The Family Alliance has helped us ask the right questions and research the right answers. We are a family here. We share all information. Treatment of my optical nerve tumor was not successful. The outcome was enucleation. The Family Alliance guided me through this. Who does a forty year woman go to for advice in living with one eye? What do I do? How scary will I look? What questions do I ask? How do you look pretty in an eye patch!!!!!!!!!!!!! To help benefit VHL, I donated my eye to research. I have friends, through The Alliance, with eye tumors. My nine year old child is healthy. No issues for now. The Family Alliance has helped me in his VHL care; what to look for, what is normal, what is not, age approprite tests, how to prepare for them. I can go on and on. The Family Alliance has helped me become a stronger person. Marie
The Great!
I've personally experienced the results of this organization in...
receiving much needed support with health issues.
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How frequently have you been involved with the organization?
About every six months
When was your last experience with this nonprofit?
2009
Our daughter went to our family optometrist for a routine exam. She was back in the exam room and the doctor asked me to come back to the room. He said that he had found a tumor in her eye and had his medical book out. He said it looked like a VHL tumor. That was the first time we heard those words. We were sent to an ophthamologist for surgery on her eye and later to a major medical facility for further diagnostic studies. We also found that she had a spinal cord tumor and needed immediate surgery to remove it. After much frustration we found an excellent surgeon that was able to help our daughter. My husband was intensely working on the internet to find our best options. He connected with the VHLFA and we learned there were other people they were helping with answers to the same haunting questions that we had. She now goes for routine checkups and has had several more surgeries to manage her condition. We attend the meetings to keep informed and know that the VHLFA is only a phone call away.
The Great!
I've personally experienced the results of this organization in...
We were welcomed into this group of individuals that were well informed, kind, understanding and cared about us and our daughter. Words cannot express the benefits of the VHLFA and our appreciation to Joyce Graff and this outstanding organization.
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How frequently have you been involved with the organization?
About every six months
When was your last experience with this nonprofit?
2010
About eight years ago, when I was a freshman in high school, my mother and sister were diagnosed with VHL. The VHLFA was a tremendous resource for my family as we found out more about the disease and the course of action that we had to take. They have an incredible amount of information for the VHL community, including information about the symptoms of the disease, where to go for genetic testing and the appropriate VHL screening, and other valuable knowledge. Although VHL is a rare disease, the VHLFA has allowed my family to be part of a strong community. My positive experiences with the VHLFA helped inspire me to become very active with awareness and fundraising efforts for VHL. When I started college four years ago, I founded the VHL awareness group on Facebook called "VHL: Spreading Awareness of von Hippel-Lindau." Here is a link to the group: http://www.facebook.com/group.php?gid=2238187984&ref=ts .The group currently has over 2,000 members, including patients, families, friends, researchers, and others from the VHL community. I frequently update the group with relevant information, most of which comes from the VHLFA and their website (www.vhl.org). Many times, I send out messages upon request from the director of the VHLFA. I am privileged to be a volunteer for the VHLFA.
The Great!
I've personally experienced the results of this organization in...
my family's life. When my mother and sister were first diagnosed, they sought out information from the VHLFA as to where to go next. Since then, we have depended on the VHLFA for keeping us updated and informed about VHL.
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The kinds of staff and volunteers that I met were...
Always kind, thoughtful, and informative.
If this organization had 10 million bucks, it could...
benefit research that can result in a cure! It can also help us teach more about about what VHL is, through various awareness campaigns.
How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
VHL Family Alliance is an amazing organization that has given me the support to fight for my life in many aspects. The support of its staff and volunteers allows many to find the doctors they need. The work of this organization to support researchers to find a cure and to the patients and their families to find support is amazing.
The Great!
I've personally experienced the results of this organization in...
Medical support and direction. Support in others who have the same disease. This organization has helped open doors that were closed to me.
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What I've enjoyed the most about my experience with this nonprofit is...
The community and support
The kinds of staff and volunteers that I met were...
Helpful and encouraging.
If this organization had 10 million bucks, it could...
Support grants to find a cure for this disease and offer more support individuals with or families with VHL.
How frequently have you been involved with the organization?
About every month
When was your last experience with this nonprofit?
2010
The information I have received from the family alliance about my vhl disease has been very important to my health. Were it not for the cutting edge information I have obtained over the years, I truely believe I would not be alive today and still be in relatively good health.
The Great!
I've personally experienced the results of this organization in...
successfull Adrenal Gland, Brain, and Spinal surgical decisions
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What I've enjoyed the most about my experience with this nonprofit is...
up to date information
If this organization had 10 million bucks, it could...
solve VHL!
How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
When my family was first diagnosed with VHL, a rare genetic disease, we were referred to the VHL Family Alliance by the physician who made the diagnosis. The VHL Family Alliance has been an important source of information regarding this disease. The newsletter conveys essential updates and treatment options. I have often taken this newsletter with me to doctor's appointments and it has impacted the quality and effectiveness of my care.
The Great!
I've personally experienced the results of this organization in...
As mentioned earlier, the information received from this organization has impacted the quality and effectiveness of my health care and made a difference in the quality of my life. Thank you, VHLFA!
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What I've enjoyed the most about my experience with this nonprofit is...
The professionalism of the leadership, their commitment to the organization, and the progress they are making on our behalf.
The kinds of staff and volunteers that I met were...
Amazing. Committed. Informed. Supportive.
If this organization had 10 million bucks, it could...
Find a cure!
How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
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