Press Articles about VHL

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Public Service Announcement featuring Keith Richards
Click here for Basic Facts about VHL
Click here for radio interview archive, and a list of forthcoming interviews

Jenny M. and Kim H. join 50,000 trekkers for the annual Bloomsday walk in Spokane, WA during which they are cheered on by the crowd and even interviewed by KXLY television. See their story: Here
Article about VHL in the Annual Report of the NIH Clinical Center There's another nice photo of Dale M. with President Bush, and an article about imaging the endolymphatic sac learning about how the ELST tumors work. More	Dale M. with President Bush, January 2008
Lonestar Red Team Wins 9th Place! Chloe E., who with her brother have been representing VHLFA this year, is a champion cheerleader. You have to see this video to believe it -- it's more Olympic gymnastics than cheerleading! Congratulations to Chloe and her team!	World Cheerleading Championships 2008 in Orlando
Memory Quilts Amanda H., VHLFA Chapter Chair for Mississippi, created memory quilts for her children to help them remember their mother, who died of VHL. See the story from the Clarion-Ledger "Wrapped in Love" and view the Accompanying video by Rick Guy	Anna Catherine with her memory quilt
House #402: "The Right Stuff" Works with a patient who proves to have VHL. See the episode, summary, medical notes, and blogs. Come talk about it in our online support group! Click here for more.
NCI Director Appointments Dr. Niederhuber has appointed four new people to his Director's Consumer Liaison Group (DCLG) for the U.S. National Cancer Institute, one of whom is our own Joyce Graff. See the article
Bikers in New Hampshire raise money to cure VHL. Fred Turner, New Hampshire chairman of the VHL Family Alliance, organized a motorcycle rally and fundraiser in honor of his late wife, Linda. See full article
Family stays positive in face of challenges Manalapan residents want others to know about rare disease by Amy Rosen, News Transcript, Malapan, New Jersey, July 18, 2007 Click to read the full article
A War on Kidney Cancer CCR Connections, Vol. 1, No. 1, 2007 The debut issue of Cancer Reserach Connections features the work of Dr. Marston Linehan's group at the National Cancer Institute. Patients Alice and Jeanne were interviewed about the role of patients in this research project. Click here to see the full article.
All in the genes By Linda Ann Chomin The Observer and Eccentric, Oakland, Wayne, and Livonia counties, Michigan, June 17, 2007 VHL Disease requires Constant Monitoring Read Wheatley C's story The photo shows her sister Liz, Wheatley, and their dog Cessna, on top of Sugarloaf Mountain in Marquette, Michigan.
Cancer Strikes Mom, 3 kids Julie D. lost her mother at age 46, a maternal uncle at 29 and her maternal grandmother at 49. She had one child, Samantha, when she was 16, and was tested them for VHL using a method called linkage analysis. They said it was 98% certain she did not have VHL. Then ten years later, she had a brain tumor . . . Read Julie's story.
Mom lives with rare genetic condition Julie D. of British Columbia, Canada, was screened for VHL in 1996 and told she did not carry the alteration. In 2005 she was diagnosed with a brain tumor ... and VHL. Vikki Hopes tells Julie's story in the Abbotsford News. Bonus: Samantha (age 11) tells her French class about VHL.
Inherited Disease may have fueled Hatfield-McCoy feud. An Associated Press article wonders whether the most infamous feud in American folklore, the long-running battle between the Hatfields and McCoys, might be partly explained by a rare, inherited disease. Is this true? Response from Joyce Graff Click here for more on pheos and how to diagnose and treat them.
President Bush visited the cancer laboratory of Dr. Marston Linehan, Chief of Urologic Oncology at the U.S. National Institutes of Health and was briefed on their advances in kidney cancer, much of which is due to their study of VHL
Dr. Stéphane Richard of Paris, France, head of the French VHL Study Group and a member of our Medical Advisory Board, was honored with the grant prize in cancer research by this year's Victories in Medicine awards, a highly prestigious award in France. See Delphine's report from the event.
Alex Anderson of New Jersey, is raising money to find a cure for VHL. He is running an "Alex's Lemonade Stand" as part of the national campaign.Read his story in The Press of Atlantic City.
Alice C., Washington, was featured with her brother and sister in an article by Amy Marcus in the Wall Street Journal, "When Cancer Runs in Your Family", May 23, 2006. This article is protected by copyright but can be seen if you register. "Alice Coday, 51, says her father, who had von Hippel-Lindau disease, died at the age of 53 from complications of it. Ms. Coday and her two siblings have the disease. All three of them are being followed as part of a family study at the National Institutes of Health. Ms. Coday has had five surgeries related to the disease, including two to remove tumors in her kidneys. "Most people wonder if they'll get cancer," said Ms. Coday. "VHL families wonder when. But because of the research on families, the gene was identified. That's always the first step leading to treatments."
Derik H., Connecticut is recovering from brain surgery, and raising money to fund research and find a cure for VHL. Read the press release See the story in the newsletter
Keith Richards of Brooklyn, New York, has written a song about his brain tumor experience. Read his story in the newsletter Hear his song
Brooke McLaurin won the swimsuit competition Friday June 24, 2005, and was crowned Miss North Carolina on Saturday June 25. She will continue her community service work for brain tumor awareness and VHL throughout North Carolina, and in 2006 goes on to compete for Miss America! VHLFF article, Aug/Sept 2005 A Queen with a Star in Her Crown, by Bill Kirby Jr., Fayetteville Observer, 4 Sept 2004 View from her Throne, by Nancy McLeary, Fayetteville Observer, 4 Sept 2004	Brooke McLaurin, Miss North Carolina 2005
Melissa Pays Tribute to her Dad while Raising Money for Cancer Research Melissa Gokey-Thomas of Magnolia, Texas, completed the USA Ironman Triathlon at Lake Placid, July 24, 2005, a grueling 13.5 hours of swimming, bicycling, and running. She dedicated her effort to her father, who has VHL, and worked throughout to raise money for VHL. VHLFF Article, Aug/Sept 2005 See Melissa's website	Melissa Gokey-Thomas. A typical training day includes a 6-hour bike ride followed by a 30-minute run. Photo by Roger Roselli, Post Journal, Jamestown, NY
On May 25 Brooke McLaurin, Miss Fayetteville 2005, in partnership with Cape Fear Valley Health System, sponsored an educational seminar on Von Hippel-Lindau disease. During the seminar she presented a check to the Von Hippel-Lindau Family Alliance. See Brooke's website. Pictured with Brooke from L-R are guest speakers, Gladys Glenn, MD, PhD of the National Cancer Institute, NIH; Lori Farmer, RN, ARNP, MS, APNG; Brooke; and Audrey Clifton, Fayetteville native and President of the North Carolina Chapter of the VHL Family Alliance.
Jeanne McCoy featured on ACS website in her home state May 2005, South Carolina
Bob Keesler honored for Cub Scout work April 25, 2005, Florida hear the TV spot!
Brooke McLaurin dreams of becoming Miss America, and she's on her way! She's Miss Fayetteville, contending for Miss North Carolina. See Brooke's website - check out her Platform Statement! A Queen with a Star in Her Crown, by Bill Kirby Jr., Fayetteville Observer, 4 Sept 2004 View from her Throne, by Nancy McLeary, Fayetteville Observer, 4 Sept 2004

Billboard for VHL Awareness in Ohio

Guidelines for Reporting and Writing About People with Disabilities
http://www.vhl.org/press/guidelines.htm

A Way with Words: Guidelines and Appropriate Terminology For the Portrayal of Persons With Disabilities, Secretary of State, Canada
http://www.schoolnet.ca/aboriginal/disabl12/

Understanding Disabilities: Examining Issues of Language and Portrayal, by M.K. Tan
http://www.isdesignet.com/Magazine/Jun'95/Disabilities.html

Press Articles about VHL

See their story: Here

2004 Awareness Campaign: Early Detection Empowers Us