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Cancer Research Fund - VHL http://www.vhl.org
Cancer Research Fund / VHL Family Alliance
2001 Beacon Street
Suite 208
Brighton, MA 02135Map thisWe fund research into angiogenesis and tumor growth, and provide morale support and information and referral to people dealing with vascular tumors of the eye, brain, spinal cord, kidney, pancreas, and adrenal glands. These and other tumors occur in a condition called von Hippel-Lindau disease...
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Lacrosse Game at the TD Banknorth GardenSaturday night, February 6th , the VHL Family Alliance will be at the TD Garden as the Boston Blazers Lacrosse Team takes on the Rochester Knighthawks.
Game time is 7:30 and our seats are in rows 4, 5 and 6 of section Loge 4. Join us as we cheer on the home team and receive an official welcome on the score board. Tickets in our block are limited and will be sold for the discounted price of $20 each. So be sure to call or email your orders in asap.
Call: 617-277-5667 x-4 or
Email: office@vhl.org
Help Caleb and Chloe find a cure!VHL has had a profound impact on Caleb, age 11 and his sister Chloe, age 15. Caleb was diagnosed at the tender age of four with three heochromocytomas (pheos) on his aorta. He recently had two more surgeries to remove pheos and is now dealing with a sixth.
Chloe had a pheo removed when she was eight, and a second one this fall.In addition to the pheos, Chloe has also developed several tumors in both of her eyes. Retinal angiomas are fairly common in people with VHL. Unfortunately, her tumors are in bad locations, making them particularly hard to treat without damaging vision. Chloe, like so many others, are literally waiting on the leading edge of medical research, experimenting with new treatment methods in hopes of preserving her vision. Again, sharing thoughts and experiences with experts and other patients has been invaluable.
They are asking everyone to join us in finding a cure for VHL.
Watch this video Caleb made about VHL!
http://www.youtube.com/watch?v=e0ec7bRjS3Y
Kicking off VHL Awareness MonthThe VHL Family Alliance (VHLFA) has declared May 2008 as “VHL Awareness Month” in an effort to increase awareness, education and communication about von Hippel-Lindau (VHL)
VHL is a rare disease impacting about 9,000 people in the United States. However, research into VHL poses hopes for advancing the knowledge of cancer in general. The condition knows no racial or geographic boundaries, impacting people in every corner of the globe.
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Medical ResearchVHL Family Alliance Funds Promising Research44% of the budget for the VHL Family Alliance is directly funelled into research grants for the study of VHL and of cancer. Promising advancements have been made. This year's grants include...
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VHL is in the Genes of Amazing PeopleThe genetic disease VHL knows no racial, geographic or age distinctions. It impacts people equally from all over the world. Brooke Elizabeth McLaurin, Miss North Carolina of 2005, has VHL and established VHL and Brain Tumor Awareness as her platform. The rapper and poet Keith Richards has VHL and includes it in his songs and poetry.
VHL effects roughly 1 in 30,000, causing cysts and tumors in the body similar to cancer. It is of special interest to researchers because its study may lead to more general understanding of the disease.
The VHL Family Alliance was started in 1993 to help patients and researchers learn more about this condition.
Supported causes
Strategic ParnershipsResearch funding can not be done in a vacuum, and so the VHL Family Alliance has built strategic partnerships with many other important organizations including the Genetic Alliance and the National Organization for Rare Diseases (NORD). The VHL website at www.vhl.org is one of the country's most significant resources to people around the world for information about VHL. You can help...
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VHL Family Alliance turns 15Since 1993 the VHL Family Alliance has been making major contributions to the knowledge and treatment of Von Hippel Lindau disease. It is hard to believe that we are now turning 15. So much has happened since those early origins.
(See article)
New Study about VHL helps hearingThe results of an imaging study conducted at the Clinical Center at the NIH could help doctors protect and preserve the hearing of people with the rare genetic disorder von Hippel-Lindau disease (VHL) that causes abnormal growth of benign and cancerous tumors in numerous parts of the body.
Homemade Quilts Keep Memories of Mother CloseShe was taken from her mother’s womb during an emergency C-section March 31,2003, a precarious three months shy of her scheduled arrival.
A memory quilt“It started when Anna came to (husband) Mark and me crying one day back in May,” Amanda says. “She said, ‘I miss my Mama Robin. I never got to say goodbye. I never got to touch her.’ That’s a lot for a 4-year-old to cope with.
Last week, Anna was given a memory quilt made of Robin’s dresses and maternity clothes. The quilts also include pictures of Robin at various stages in her life - from 6 weeks to adulthood.
Rare disease offers major insights into cancerWhat can a disease so rare most people have never heard of it teach researchers about a process that affects virtually every type of large tumor?
If you’re William Kaelin, M.D., potentially enough to devise a way of halting one of the most dangerous phases of tumor growth.
VHL FAMILY ALLIANCE ANNOUNCED PARTNER IN RARE DISEASE DAY(Boston, MA-January 28th, 2009)- The National Organization for Rare Disorders (NORD) is coordinating the observance of Rare Disease Day in the United States on February 28, 2009. On that day-and in the weeks leading up to it- VHL Family Alliance will join with others around the world in focusing on rare disease challenges and the importance of research in developing diagnostics and treatments.
Joyce Graff, the executive director of the VHL Family Alliance, has been a board member of NORD for almost 10 years and is currently working with her staff and members to participate in this event. Graff says, \"VHL affects one person in 32,000. But there are more than 7,000 rare diseases. Each of the rare diseases may be rare, but the experience of having a rare disease is not rare. One person in ten is dealing with some rare disease.
The VHL Family Alliance (VHLFA) will be posting news about this upcoming event on its website, www.vhl.org and is actively encouraging its members to write essays and post videos sharing their experiences with VHL. An article about Rare Disease Day is in VHLFA' January newsletter.
According to Graff, \"Those of us with VHL have many issues in common with other rare diseases -- the difficulty of getting a diagnosis, or finding appropriate treatment, the stresses of living with a long-term condition, the worries about what may happen to your children.\" Graff hopes that Rare Disease Day will help to raise awareness of rare diseases and the need for safe, timely diagnosis, and effective treatment.
Along with other NORD partners, VHLFA is holding its own local event in celebration of Rare Disease Day, a free Laughing Yoga class with Sandy Boris-Berkowitz. The event will be held on Sunday, February 1st, 2009 at 2 pm the Watertown library in Watertown, MA.
VHLFA is also welcoming anyone with any medical challenge or rare disease at http://rarediseases.inspire.com or www.rarediseases.org.
The story of a boy with VHLWhat is VHL? I am Alex Anderson, and I was unusually young when I was diagnosed at age four, with von Hippel-Lindau disease. I am twelve now. Here is my story:
