VHL Alliance

The VHL Family Alliance supports families and individuals with von Hippel Lindau disease world wide. I can't imagine living with this disease without them.

I was diagnosed wen I was 18 after 6 long years not knowing what was wrong. Im the only one in my family with the defective gene so realy looking for others like me because you know how it affects every day life. Xx

I'm a family member of a VHL Warrior. We found VHLA earlier this year when going through another surgery. What a relief! First, the resources available (especially the handbook) have been invaluable! In addition to improving our own knowledge, we've been able to educate doctors in our area thanks to VHLA. Second, the have a connection to a community of caring, kind, knowledgeable, and driven people is extremely comforting. Each person I've had interaction with from VHLA has responded promptly and with genuine care of my personal interest. I feel grateful we have them! If you have to have VHL (or have a family member with VHL), at least you get VHL Alliance too!

I was diagnosed with VHL in 1993 and became of the VHLFA shortly thereafter. The VHLFA has been the hub for patient education on the symptoms and monitoring of VHL and the backbone into research and establishing Clinical Care Center. The VHLFA is not only an organization but also a "community" where people can feel like they are not alone in the fight against VHL.

I was diagnosed 19 years ago with VHL and was really lost.. I found the family alliance and found lots of incredible info and so many answers. The VHLFA saved my life. They helped me find the right doctors and have always been there sometimes just to listen.

we are not left alone, this is the most important of all. we are thankful to VHLFA ALLIANCE.

My family and I are so grateful for the VHL Alliance. Through resources and forums we get much needed information to our physicians.

Thanks to this charity i have found out so much more about VHL..My son suffers from it and if it wasnt for this wonderful charity and the people who run it i dread to think where we would be...They are always there to answer questions and offer support . Thanks so much for everything we really appreciate it..

Mi esposo fue diasnosticado con VHL este ano en Septiembre 2012 y no ha sido nada facil porque el nunca ha sido un hombre de enfermedad. Suponemos que tiene VHL por su madre que murio ya hace 12 y tenia un cyst en el cerebro. Tambien En el mes De Octubre me dijeron que mi hijo mas grande Tambien tenia el disease. Desde que todo esto comenzo me siento dichosa de saber que existe este web donde puedo encontrar mas persona con respuestas a este disease me siento mejor y con mas apoyo. Tambien he aprendido que Dios es muy pero muy grande y que nunca nos desampara. Ahora voy a comenzar a hablar con doctores en mi pais dominican republic acerca de este disease. Si alguien esta interesado en ayudarme con informacion para la republica dominca por favor mandar un email at delacruz1504@gmail.com. Gracias familia

I am vice president of VHL France. We all appreciate the role taken by VHL Family Alliance in supporting patients and their relatives and in supporting the different country associations in sharing experiences and expertise

I am so thankful to have the VHLFA as a valued resource and partner in my son's medical care! I am counting on the medical research to lead to a cure for VHL.

I was diagnose VHl over 20 years ago, my doctors knew very little about the disease so for many many years it was a case of fumbling in the dark. On a trip to Chicago , I was introduced to the VHL Family Alliance - it was such a relief to talk to other people in a similar situation. The VHL Family Alliance has been literally a "life saver", the support, experience, understanding and contact with groups are amazing - a friend whom you can turn to when in need of advice and help. With VHL we all have to manage our own health and that of our families and VHL Family alliance give us the information and knowledge to do that.

I was diagnosed with VHL almost two years ago. The only reason I got the genetic testing for VHL was because of the VHL Family Alliance. The information provided and the outpouring of support from this group has helped tremendously in guiding me to find proper treatment.

WHat a support system !!! My husband's whole family has this horrible disease and so does my child. I need resources such as this to keep my sanity. Thanks so much !

I was diganosed with VHL 4 years ago and if it wasn't for VHL Family Alliance I don't know what I would have done. I'm from a country where the disease is extremely rare, the information is almost non existing and my life would have been a constant matter if I wouldn't have benefit from the help of VHL Alliance Family and its members. Great jos and keep up the good work! Thank you!

The vhl family alliance has been a great support to my husband and our family. We have greatly benefitted from emotional support and education that this organization provides.

VHL Family Alliance has meant the world to me. Through this alliance I have met friends who can relate to the unique world of vhl. Questions, concerns and ideas about vhl have been through this organization. Many thanks and kudos to VHL Family Alliance. Truly, you have helped me climb the mountain of VHL . THANKS!!!!!!!!!!!

VHLFA . . . .this is the most amazing organisation who supports all whose lives have been affected by this rare condition. Questions are answered, support given freely and with care, if you have VHL, or someone you love has VHL you will never walk alone as long as you are a part of this group.

This is an excellent organization. I have gained a vast knowledge of VHL thanks to them. A++++++++++++++

My daughter and I were just diagnosed with VHL this summer. VHL Family Alliance and Inspire have been a God send for us!! Using the site, we were able to locate specialists in the area and the clinical care center. It has also allowed us to have important questions answered and to share concerns with others who are struggling with this syndrome. With all the misinformation that circulates on the internet, it is reassuring that we can go this site knowing that the information is relaible, relivent and updated.

My VHL desease that my son, Christopher, and I am addicted with... VHL.ORG. VHLFA is the best, understanding most compassionate support staff, leaders, patient and members anywhere! I am a patient specialist support operations volunteer and chair committee participant now. Since summer 2010. They have been instrumental in our health and everyday journeys with VHL. TYVM VHLFA and all please continued support. Bless. R/ Jim F. Gandy, SFC, USA (Ret.)

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 inspire.com. 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..............

Best way to meet other people with VHL. Has been very useful and informative.

This ais an awesome!! My granddaughter and son-in-law have vhl. When my daughter passed away I was the one that needed to follow up on my granddaughters surgery's and required scans. This sit gave me help notnonly what needs to be done but emotional strength. Knowing others are fighting the same battle make me not feel so overwhelmed.

One of my very dear friends has VHL. I spend a lot of time going to doctor appointments with her and supporting her in any way I am able. I have tried to learn as much as I can about VHL and have found the VHL Family Alliance invaluable. Their portal is nothing short of a Godsend. We use it often to chat with others about different doctors and approaches. Joyce Graff is an angel and an amazing resource. The VHL community is blessed to have the wonderful organization.

This is the most useful Non Profit portal for VHL patients. The Portal is very informative and help the patient to understand about VHL disease and precautions to be taken. The most important about this portal is that people who have such disease are able to interact with other patients and share their experience. Hats off to Joyce Graff who is very cooperative and informative on this.

After loosing my husband to vhl and my son being diagnosed with it, I find great comfort from all the support and advice.

This has been a really useful portal for information and support through to HLRCC, a rare genetic condition. Without the VHL Family Alliance I don't think our tiny group of sufferers would ever have been able to come together and share the life-saving information for patients, family and professionals. It has provided sufferers with a platform, a voice, information, comfort, support.

i think this web site is fantastic it give's moral support, and it also give's us very good advice, i'm so glad i joined because now i don't feel so alone, and i know that if i need to talk ther is alway's someone out there who has felt the same way as i do at some tome in their live's

When I was diagnosed with VHL in 1999 I was in shock. My father had passed away due to complications resulting from VHL. My sister who is 4 years my senior had been sick with VHL as well for at least 13 years before I was finealy diagnosed. When I was diagnosed I was expecting something a little differant. I had many previous CT scans and MRI's and I was told it was anything from nerves to migraines to mental illness. I was scared and I got information that VHLFA existed. I thught it was only there for people that needed financing, I was not aware you could just call and cry and talk to them just like a friend, someone who really understands your feelings. I love VHLFA it is a blessing, between Joyce and NIH I am able to deal with things I do not understand. We can talk to her online or call and she listens and answers your questions and if she does not know, she will find out for you. Thank you Joyce and thank you VHLFA for being so wonderful. God bless all of you.

I love this organization. It is a great place to gather insightful information and meet new people who suffer like I do. Having VHL can make you feel very alone in this world, but connecting through this organization connects us with others going through the same thing. Information ix shard, and friendships are made. Thanks VHL and to Joyce Graff!

I am a VHL patient and a Volunteer and this organization has been a life saver and a life changer for myself and my daughter who has VHL, as well. This organization has provided me with knowledge, doctors and clinics lists a community of others like me. My life and disease is supported and I am well-educated in my disease and cancer. I have never seen an organization that truly does what is says it will do. We, as patients, know the board members and the founders of this organization personally. They are involved in our lives and personally take the time to educate us and keep us informed of new information. Their are many meetings/symposiums around the world several times a year and as a Chapter Leader, I attend meetings on the regular every couple of months. This organization asks our opinions as well as our support. I am proud to be part of such a strong community of people, supporters and educators. I am proud to be on the front line of new research and solutions information. What more can a cancer patient/survivor ask for?

This organization is a lifesaver for those of us with VHL and for the Family Members/Caregivers of those with VHL. With a small budget this organization provides support to anyone with VHL as well as providing grants for cancer research. Joyce Graff is always up to date and keeping everyone informed of the latest information on treatment options and what's going on in research. She is also ready to reach out with a helping to hand to anyone with questions about treatment, referrals to specialists or whatever they need.

The VHL Family Alliance as well as supporting people with VHL has reached out to others with rarer genetic conditions such as "Hereditary Leiomyomatosis and Renal Cell Cancer(HLRCC)" and "Birt-Hogg-Dubé Syndrome(BHD)". I have HLRCC and found that the organization called the HLRCC Family Alliance was being actively nurtured from an embryonic state by the VHLFA. The full resources of the VHLFA have been available to the HLRCCFA to get then into an up and running state, without which it would have faltered miserably, The VHLFA expertise and knowledge has been shared so that we all feel part of the bigger community. Help was given in the writing of a HLRCCFA Handbook and setting up of our own web site. Without doubt in my mind the VHL Family Alliance can be proud of its contribution to patient advocacy and is second to none.

I lost my father to VHL 33 years ago. There was no information at that time and my family felt very much alone. When my brother first became sick, we turned to VHLFA. They were there to help us understand he some of what was happening, supporting us each step of the way. VHLFA was there to help educate and support us through it all. They provide education to families as well as doctors that aren't familiar with this disease. As I now face the disease myself, I feel hopeful with all of the progress that is being made.

Myself and two out of my three children have VHL. The VHL Family Alliance has walked me through this disease since I was first diagnosed 20 years ago. The information on Vhl and screening is priceless to me and my doctors. So many times I have not felt that my doctors understand the disease and VHL Family Alliance is where I always turn. Now, in this new chapter of my life, the Alliance is walking me through getting the proper screening for my children.

I and three of my five children have VHL. The VHL Alliance has been three for me from the beginning when I first found out about our disease in 1992 when my daughter of four at the time, came home from preschool and I received a call from her teacher saying she was blind in one eye. We thought it was cancer and then learned it eas a hemangioma. She was blind in her left eye. We learned that we have people who helped us. We got help and were lead to testing for all of us finding that myself and three of my children of five have VHL. Since we have all had Pheochromosytoma tumors removed and some of us two surgeries. The alliance has been there to catch my tears and direct me and help me learn about everything.

I am a physican working with VHL patients and patients with many other genetic diseases. The VHL FA is most helpful and best organized genetic support group of any kind. I wish patients with other genetic disorders had a support group as well organized and useful as the VHL FA.

Dennis S

I received my first “The Family Forum” dated June 1, 1993 and probably have ever volume since then on file. They have provided a good reference over the years and have provided valuable information to our family. It was through the VHLFA Hot Line that I learned of the VHL protocol at NIH, and we have been going there since 1996. I am also grateful for The VHL Handbook in dealing with this disease.

The VHL Family Alliance has taken on and provided support with the most crucial elements surrounding the VHL disease and how it affects the patients, their families, friends, and doctors. The Alliance has been instrumental in getting the word out to the general public about this less common disease and with that, garnering interest and support. We are so grateful for all of its continued efforts!

VHL.org has been a fund of information for us since my husband was diagnosed in 97 and my son in 98. I have even looked to this site to advise our family Dr. on what screening to do. The children's book was wonderful and has helped explained to our grandchildren how their little sister got VHL. Please keep us updated on any new procedures etc. as we look to you to keep us informed. Thank -you for all you do.
Linda Hayward
Bucksport ME

I have been involved with the VHL Family Alliance since my son was diagnosed with the disease in 1992. It is my only source for meaningful information for this rare disease. The Family Alliance provides a wealth of resources in spite of its very tight budget. I have not seen any organization provide so much with so little. I am a huge fan of all they've done, with a special thanks to Joyce Graff, the engine that makes the VHL Family Alliance run.

I have been a member of the VHL Family Alliance since 1994 serving as the Minnesota Chairman until 2008. Everyone works and gives of themselves 100% to help others with VHL and inform the public at the same time. I knew very little in 1982 when I had my first surgery for VHL but this organization has since improved everyone's knowledge by the handbook, meetings, 1-800 phone number, internet information site, newsletter, printed brochures and a new member packet loaded with information. Since VHL is a rare disease and is undiagnosed for many families, it is very important that many doctors that deal with the eyes, brain, spinal cord, adrenal glands, kidneys also become familiar with making the correct diagnosis. The VHL Family Alliance has done everything possible in a 24 hour day, 365 days a year to achieve its goal and deserves a big pat on the back. Congratulations to all the Board Members, State Chairmans, Fundraisers who spend so many hours promoting such a wonderful and worthwhile organization.

Our son was diagnosed with VHL this year, and the doctors at Johns Hopkins referred us to the VHL Family Alliance. I have been very impressed at how responsive, compassionate, and effective this group is. They operate on a shoestring budget, and use every dollar they receive to fund research on better diagnosis, treatment, and a cure for VHL. In addition, they are a lifeline to individuals and families coming to terms with this rare genetic disorder.

I am a patient with VHL who has volunteered with the VHL Family Alliance since 1994. I took the Charity to the next level by making it an official Canadian Charity with a Registration Number. The first Candian meeting was held in a back yard in BC. There was another meeting in BC and a Global meeting held in London Ontario.

I've had multiple brain, spinal and kidney operations as well as the loss of one eye and through it all I used the information and professional guidance of the Alliance to help me cope.

The volunteers and Joyce Graff herself are both caring and professional at the same time. This organization has been fortunate in having a leader with the skills and dedication of Joyce Graff.

There is noting negative to say about the Alliance. Joyce has worked very hard on making sure the structure around her is solid moving forward and I do hope the organization stays strong if the time comes when Joyce has to step back.

Tania

I have a daughter who had a hemangioblastoma this past April. So far, she shows no other signs of VHL; and we are arranging the test to hopefully rule it out. However, this has caused us to become aware of this disease and to help in any way to find a cure! The VHL Alliance has been fabulous at providing information and support that we haven't been able to find elsewhere. They are encouraging to individuals facing this disease, and working hard to do what it takes to inform the public, and support finding an end to this disease. Thank you VHL Alliance!!

VHL Family Alliance has provided information, inspiration, and assistance to my whole family. When my father died 15 years ago, very little was known about VHL. Now, because of the Alliance, physicians can connect with the latest information and studies. My physician, at OHSU, a fabulous teaching medical center, stays in touch and up to date with VHL.

Thank you, I'm grateful.

VHLFA deserves the award of $5,000 for progressing and making a huge difference in the medical world in such a fast trajectory.

Thank you,
Eva Sharlene Peters, PHD

I can't say enough good things about VHLFA and Joyce Graff. They were a great support to my brother when he was battling the disease. Now that I am also fighting VHL, I have found it to be a great resource for information and support. They are constantly coming up with new ways to raise money and awareness. Together we can beat this disease!

The VHLFA has been an endless source of knowledge for this very rare disease. There is power in knowledege which deminishes fear.
Thank you to the staff at VHL Family Alliance!

I am eternally grateful to Joyce Graff and the VHLFA. Without them my family and I would be totally lost. I was diagnosed with VHL in December of 1993. We were told this was a rare hereditary disease that was not commonly known by most doctors. I was being scheduled for surgery to remove a tumor that was at the base of my brain. Shortly after being diagnosed, my husband and I was watching a news show about a woman my age with this rare disease. To our surprise, it was VHL! My husband wrote the show and we were given the contact information for the VHLFA. I believe the alliance had just recently formed and we could not believe the timing of my diagnosis and the show. Over the last 18 years I have undergone over a dozen surgeries removing tumors from my body due to VHL. The VHLFA was a great source of information and supprt for myself and my family. I have used the 800 number numorous times over the years and we have attended several meetings organized through the VHLFA and medical professionals. I have been given the opportunity to talk to and meet people who live with the same condition and their families....I would never wish this disease on anyone else, but it helps to know you are not alone. Ironically through the years I have crossed paths with several people who either have VHL or knew someone with the disease. I felt confident in directing them to the VHLFA to help them deal with this disease. I have also had the pleasure of meeting with Joyce Graff several times over the years. She is a remarkle woman!!!

I was diagnosed with VHL 2 years ago ( I was 33 ) after 2 brain and 1 spinal surgeries. When I was diagnosed I was just told what disease I have and I will have to be monitored. I went home and with "clear" mind started looking online what VHL is. The VHL Family Alliance was the only information I could find. When I typed VHL it was showing VH1 , not too encouraging ...... Thanks to VHL FAMILY ALLIANCE I got in touch with local VHL patients, found Doctors I need to see, found out where to get tested, really important things no one else told me. My son tested positive for VHL.....We are doing everything we can to support VHL FAMILY ALLIANCE to continue helping others like it helped me and finding a cure.
Thank you VHL FAMILY ALLIANCE for all that you do!

The VHL Family Aliance three years ago helped me knowing about this rare disease and with the support of Joyce Graff we made in Argentina The VHL Family Asociation and now the people who have this rare disease from South America, Latin America and the Caribbean can know about this disease thanks to the information that gives us The VHL Family Aliance.

I was diagnosed when I was approximately 20 years old. I was in the Army, stationed in South Carolina and far from my family in California. I felt isolated, scared, and uncertain of what was going to happen to me. My mother had been diagnosed years before, and I had lived in fear of being diagnosed with the same disease. When my mother told me about the vhl alliance, I was skeptical, but pleasantly surprised once I signed up for the website. Having a rare disease is hard, especially when you are younger and have no idea what could happen. Everything seems worse than it really is, but the alliance helped me with my fears, and keeps me informed on the upcoming events and the advances in research. I have even given presentations at military bases to urge people to donate to the cancer research funds. I can't imagine going through a diagnosis and life without people like Joyce Graff and the vhl alliance.

Having a rare disease can be overwhelming! Because VHL is so unique, no one can really understand the questions and concerns you have. Finding the VHL family alliance was a godsend. From the great handbook which details all the testing, to the newsletters and bulletin board, it has all been a great help.

The VHL Family Alliance has helped me so much during this past year. I have had so many questions answered by so many affected by this awful diseae. Special recognition goes to Joyce for her dedication to this cause. She has given me so much peace of mind. I am so thankful for the VHL Family Alliance and hope and pray for a cure one day soon!

This organization has helped me and my husband more than words can say. With VHL being such a rare disease even his doctors sometimes aren't sure how to treat certain problems that pop up along our journey to manage his health. This website has provided key information that has improved his quality of life and given us tools to help his doctors continue to check and prevent future health problems-we printed out the VHL handbook and gave it to the team of doctors that handles his care locally and they learned from it as well. The lectures on the website from a neurosurgeon at MD Anderson gave us key infomation we had been wanting concerning tumors on his spine. We from there went to see this doctor and our minds were put at ease and we learned even more about this VHL disease. The website is also so important to help us know there are others like us out there and it reassures us that we're not walking this road alone, others with VHL are contributing alongside us with contributions for research that hopefully will mean a cure for this one day.

Hi, after 2 brain operations, radiotherapy and then an operation on his spine, we finally became aware of VHL. we thought this was soemthing that effected only my cousin, now, thanks to VHLFA, we know so much more. god bless you, and hopefully our group will grow, without too many more afflicted people. VHL is a minefiled that is never cleared.

The VHL 800 # was my first phone call on January 16th, 2006. This was the day that my son was the first ever in our family to be diagnosed with VHL. The only doctor that really knew what VHL was that first day was the neurosurgeon. I called to get some answers and find out about the disease and just to talk to someone. All of the staff at VHLFA is always extremely supportive and honestly a phone call away. I feel I have been blessed to have the VHLFA as a family member of someone with VHL and also a volunteer.

The VHL Family Alliance has been a wealth of information for us since our son was diagnosed with this disease. This organization offers the type of support to those with VHL that is very difficult to find anywhere else.

I was the first in my family diagnosed with VHL, although in hindsight several cousins had already died from complications arising from it. VHLFA provided education, support, and encouragement through the process of getting me and my family tested, and helping plan our attack. Thank you, VHLFA!

I have been working the VHL Family Alliance for many years since I first starting taking care of VHL patients at the National Eye Institute and later at the University of Pittsburgh and now at UCLA. This organization does a fantastic job of informing its members, providing clinicians with critical information which is essential since the condition is rare and most doctors are unfamiliar with its diagnosis and management. The VHLFA has sponsored outstanding workshops to bring experts in contact with patients, provides support to each other through its newsletter and blog. Though small and with limited funds, the VHLFA has encouraged dialogue and collaboration among research groups working on the disease and has helped to support clinical research studies. Finally, the VHLFA has made a major contribution to the care of VHL patients worldwide by creating and certifying treatment centers of excellence in which patients can receive coordinated and expert care for all of the manifestations of VHL. I am extremely proud that UCLA is now one of those centers. No other organization with which I have worked (and I deal with many) has used its resources so wisely and to accomplish so much for those who need help.

I was diagnosed with VHL in 1981. I have called their 800 hotline for help many times. They not only recommend doctors,and Hospitals they supply comfort and hope for those of us with the disease. I find that VHL family alliance is a big part of my live.

My brother was diagnosed with VHL 8 years ago. He was losing the feeling in his fingertips and was getting headaches and heard fluid sloshing in his ears. He thought he had a sinus infection. He finally took himself to the hospital emergency room and a Cat scan showed a hemangioblastoma on his brain stem, as well as a build-up of spinal fluid on the brain. He required immediate surgery and a shunt. It was then determined that he had multiple brain, spine, and kidney tumors. His first surgeon thought he had kidney cancer that had spread to his brain. One of the neurology residents suggested VHL. No one else in our family had ever heard of it. We immediately started researching and found the VHL Family Alliance online. They provided us with the education that we so desperately needed. The handbook, the newsletter, the conferences, were all invaluable in our quest for timely information and proper care. We were able to be proactive and inform various doctors about the disease and it's ramifications, as well as the various surgical, radiation, and medication options available. We mailed copies of the VHL newsletter & handbook to every new medical professional involved in my brother's care prior to new appointments. They have all been grateful for the education. The VHL Family Alliance has also been a source of emotional support. They helped us move through the stages of diagnosis shock, surgical and procedural fear, and inability to cope to the ability to empower ourselves through education. It's a great equalizer to be a successful partner in one's treatment rather than a pawn. We will always be grateful to the Alliance for their guidance and suport.

My father has VHL. We never knew what VHL was in the first place. We were in shock. I was in Canada, far away from home and my father; They are in Thailand. The website significantly helped me to understand and be able to investigate more about VHL. It helps my family to know that there are other families out there facing the similar situations like us. But we still have hope for our future.

My son has VHL we have dealt with it as a family since 1998. He is the only and first case in our family. VHL Family Alliance has been there as a support, listening to our problems, giving us information about the disease and guidence on where to get more information. They are invaluable to our family.

I found out one of my best briends had VHL, so I found the VHL family allience website. Within a couple of days, I was able to gather information and get enough "materials" to get my friend going into a new lifestyle with VHL. furthermore, they helped us find a specialist who manages VHL in our area. It is nice to be able to get most of the information and support you need in ONE PLACE, specially under the stress that illnesses bring about.

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 .

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.

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

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.

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.

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 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.

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 VHLFA is THE source for VHL patients to get help and feedback on any issue one may have. They provide guidance and physical and emotional support fo those of us and our families who have this terrible disease. Whenever I have questions or need help in locating a Dr. with a particular specialty, Iknow I can count on the VHLFA for help and comfort.

This Organization is a haven for those of us with VHL. When you deal with a rare disease it's often next to impossible to meet and talk to others who are dealing with the same issues as you. It's also quite possible that you are unable to find healthcare providers who have experience with your disease. This is a place where you can talk to, share concerns and find out about the latest treatments and advancements from others who also have VHL. Thank you Joyce and everyone else who is part of the VHL Family Alliance. Not only is the VHLFA here to support each and everyone one of us whether we have VHL, are care givers of those with VHL or just someone with a question, but you also raise money to give out grants for cancer research and keep in constant contact with the Doctors and Researchers that are working on a cure.

The VHL Family Alliance with Joyce has been a lifeline for VHL people like myself. It has been a source of inspiration, reality checks and an encouragement to not just fight but fight harder.

TheVHL Alliance under the auspices of Joyce W. Graff has made such an impact on the lives of people with VHL many lives have been saved and helped to lead a better life. She has worked with the medical community to further research to help find a cure for VHL. She and her wonderful staff are to be commended. My concern is the lack of funding they receive because it is a rare disease.

This organization offers first hand personal references for those dealing with VHL. Well organized and run with dedicated volunteers and staff.