|
|
Click here to request a paper press kit
or see our online press kit
Click here for 60 sec Public Service Announcement
Click here for Basic Facts about VHL
Click here for radio interview archive, and a list of forthcoming interviews
| The Star Newspaper in the UK featured the Fox-Stillwell family in its magazine section. They raise money to support Dr. Maher's VHL research at the University of Birmingham in England. |
|
Eurordis Reports on VHL European Leadership Meeting
VHL Leaders from eight countries met in Cologne Germany in September 2011, led by Gerhard Alsmeier of Germany. Our German and Spanish affiliates have been participating in a new multi-lingual discussion group sponsored by EURORDIS in Europe and NORD in the US.
Click here for the full article
|
|
|
Marston Linehan, chief of urologic oncology at the National Cancer Institute, bridges the gap between genetics research and treatments for cancer. Click here to read news report. |
Dr. Marston Linehan w/
fellow doctors |
|
A three-part series on Grey's Anatomy featured a patient with von Hippel-Lindau disease. Read more here
|
Scott Foley |
|
After VHL is used as the subject of a popular series "Grey's Anatomy" a woman with VHL comes forward and is featured on the television news.
Click here to read our page and see the broadcast |
|
|
Ann Riley sings Wind beneath my wings in memory of her grandmother on the Ralph and Friends show in Connecticut.
To see her on Vimeo click here. |
Ann Riley |
|
Michael’s wish to go on an Alaskan Cruise aboard Royal Caribbean’s Radiance of the Seas was a dream come true.
See Michael's story at the "Make A Wish" webpage by clicking here. |
Michael in Alaska |
Barack Obama pledges $1 billion to genetic research
The genetics laboratory of Dr. W. Marston Linehan at the National Institutes of Health, which researches VHL among other genetics diseases, recently received a visit from Barack Obama.
|
Dr. W. Marston Linehan with President Barack Obama |
Walkers raise a Research Grant for DF/HCC
Twenty walkers, one "virtual" walker, and Snowy the VHL mascot have raised $13,000 to fund a career development grant for a researcher at Dana Farber/Harvard Cancer Center in Boston.
|
Shaun's Fighting Irish: One of three groups of walkers in Team Kidney at the Jimmy Fund Walk
|
Female-only phenomenon takes off in Providence
It's simple: No Boys. No Booze. No Judgment. (Legwarmers Optional)
|
Getting down in Providence |
|
Dr. Michael Yeh (Endocrinology) will be the primary contact person for people with VHL seeking care at University of California Los Angeles (UCLA).
See press release
|
Left to right: Camron King, Chairman of the Board of VHLFA; Calvin Cieslak, Woodland Hills, CA; Dr. Michael Yeh and Dr. Allan Pantuck of UCLA; Michelle Cieslak, Director of VHLFA; Joyce Graff, Executive Director of VHLFA
|
Alice C. has been selected as this year's LIVESTRONG Challenge Award Winner-Seattle!!
This means that she was chosen by Livestrong as the person in Seattle who has made the most significant impact on the fight against cancer and will be recognized at their Sunday program, (June 21st), at the Post-Event Party.
Alice says, "I'm still shocked that me, someone with VHL, was selected out of all the known cancers. If you can make it to the Sunday event, please wave a VHL flag. This is for all of us!!!"
|
Alice and Clancey |
There are 3 mentions of VHL on the cancer website CureToday.com.
Find them at:
CureToday.com Article 1
CureToday.com Article 2
CureToday.com Article 3
|
|
Kim Hall completed a triathlon May 30, 2009, in Washington State. She plans to do a second one in the fall, both to raise money for VHL Research.
"It's an expression of how happy I am that I'm healthy," Hall said. "Im going to finish this, because to me, it's a gift that I'm physically OK right now."
Read her story in the Vallen Record |
Kim Hall, biking on the Snoqualmie Valley Trail, Washington state.
|
|
The daily newspaper in our town did an article about our family and VHL in yesterday's paper. I thought the article was well written. It is not easy to be interviewed about this and it made me nervous. Thought I'd share it with the VHLFA community. -- Tammy N., Iowa
Here's a pdf of the article
|
Larry Norcross and family, Iowa |
Mystery Diagnosis
Malinda Sagrestano tells her story of desperately seeking diagnosis of a pheochromocytoma for sixteen years. It's a great lesson in being your own advocate, and not giving up when doctors dismiss your symptoms. Eventually she finds a doctor who is willing to listen and to work with her to figure it all out.
"Mystery Diagnosis", Season 6, Episode 6, was aired on Sunday, June 7, 2009 at 8 PM (ET/PT) on Discovery Health. |
|
Star Wars Transplant
VHLFA member Jeff Romanoff of Pennsylvania recently received a kidney transplant at the Cleveland Clinic from a fellow Star Wars Storm Trooper, Eric Seeman! |
|
|
Dr. Hartmut Neumann, one of our medical advisors, was awarded the Cross of Merit by the German National Government, for his service for the public good through
his Lifetime Achievements on
von Hippel-Lindau Disease
Click here to read about Dr. Neumann's work and this prestigious award.
|
Professor Hartmut Neumann
|
Cari E. is winning dance contents and enjoying life in Ohio.
Click here to see the full article.
| |
On October 7, 2008, VHLFA ran an ad in the first Philanthropy Bonus section of USA Today, page 21E
Click here to see or print our ad |
|
On September 21, 2008 staff of the VHLFA participated in the 20th Annual Boston Marathon Jimmy Fund Walk as Team Kidney Cancer-VHL. This group was lead by Team Captain Mary Lou Linn, along with fellow VHL Family Alliance staff, Joyce Graff, Hannah Costa, and Ranjana Sharma, who each walked the Boston 3-Mile. A new friend of the VHL Family Alliance, Carleen Gentry chose to walk the complete Hopkinton 26.2 Mile walk! |
|
| Jenny and her VHL team made a cameo appearance on the KXLY-TV news report of the Bloomsday Marathon in Spokane! She does a great promo for VHL in only a few seconds! See the video here. They raised thousands for VHL Research! Thanks to all the runners, walkers, and their supporters! |
|
Frank Caldeiro was diagnosed a year ago with a brain tumor. He made this video on YouTube for M.D. Anderson Cancer Center in Houston.
"Just passed a one year mark and my scan last week showed clean. It is a tribute to people like you that have helped me carry this burden
that seem to become lighter as the days go by.
My oncologist is happy, and of course I am happy too.
"I am still doing chemo, and either it is not that bad any more or I have gotten
used to it." |
Frank Caldeiro talks about his brain tumor
|
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.
|
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 Research 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?
|
|
| 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.
|
|
Keith Richards of Brooklyn, New York, has written a song about his brain tumor experience.
|
|
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!
|
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.
|
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.
|
|
2004 Awareness Campaign: Press Q&A: Interview
with Joyce Graff
Billboard for VHL Awareness in Ohio
Diane Gale Andreassi, Livonia
Observer, Sunday, May 30, 2004, Section C.
"Genetic Disease Causes Life-Threatening
Tumors"
Scott Rockefeller, Press & Sun-Bulletin,
Binghamton, New York, Wednesday, May 26, 2004, "Woman
hopes to educate doctors about rare disease"
Press Release from VHLFA: Little Known Cancer
Striking California Families Discussed at USC
Conference, February
21, 2004
Press Release from VHLFA: "Challenges
in Child-Rearing for Families with Inherited Disease." May 5,
2003
Trish Doller, Sandusky Register, June 10, 2002: "Ohio Woman Fights Tumor Disease VHL"
Larry B., Olympia, Washington, was chosen by his community to carry
the Olympic Torch on January 23, 2002. See
photos.
Madelaine Vitale, The Press of Atlantic City, New Jersey, Sunday,
December 16, 2001. "At Work with Scott Cannon, probation
officer, Superior Court in Mays Landing"
Frederick Melo, Brookine Tab, Brookline, Massachusetts, August 1,
2001: 1."A Family's Milestone: Brookline Mom donates
kidney to son, latest skirmish in a lifelong struggle with a rare form
of cancer." 2. "Brookline Mom founds international
support group"
Guidelines for Journalists:
Guidelines for Reporting and Writing About People with Disabilities
http://www.vhl.org/press/guidelines.php
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
|
