Whitney Fund News

bildeThe FOP benefit concert featuring rapper Sam Adams is being featured in articles in  Vanity Fair , VogueTeen,  and the  DailyRecord.com.   Excerpt from article: Since 2001, when Whitney Weldon was diagnosed with Fibrodysplasia Ossificans Progressiva (FOP), one of the rarest, most disabling genetic conditions known to medicine, her family has worked tirelessly raising money for a cure.  This year, Whitney, 18, and several of her classmates at the Pingry School in Martinsville, have taken fundraising into their own hands by organizing a benefit concert featuring popular hip-hop artist Sam Adams, Sunday night at the Community Theatre at the Mayo Center for the Performing Arts in Morristown. 

Read the entire Vanity Fair article here.  Take a look at the VogueTeen feature.  See the full Daily Record article and get details about the event here.

sugar“I’ll have to stand up for the rest of my life”

Whitney Weldon, 17, from New Jersey, tells us how she:

●  Has a rare disease that turns her whole body to bone

●  Can’t move enough to get dressed

●  Had to decide whether to spend the rest of her life standing or sitting

D ancing with my friends at my 16th birthday party, I felt my right hip tighten. ‘Not again,’ I groaned, trying to shake it loose – but it was too late. It locked into place, rigid as stone. I limped fromthe dance floor, trying to ignore  the stares. Just for one night I’d hoped to blend in and not worry about turning into a statue. “I have a rare disease called Fibrodysplasia Ossificans Progressiva (FOP). If I get a knock my body starts turning the injured tissue into bone. It’s building a second skeleton – except thisone has no joints so it can’t move. Eventually I’ll be frozen in position like a living statue and, even worse, there’s no cure. Doctors can’t remove the extra bone, as it just grows back even thicker. “At the moment I can’t move  my neck, raise my arms or bend down. My right elbow is locked at a 90-degree angle and somedays my right hip will freeze up.  There are days when I need to take painkillers.  One day I won’t be able to switch position any more and, as I find it more comfortable to stand than sit, that’s what I’ll choose when the time comes. I’ll be standing for the rest of my life.”

Dear Friends and Family,

image003I want to start off by thanking each and every one of you for generously donating to the Weldon FOP Fund over the years to help others and me who have this condition. Ninety-eight cents of every dollar is donated to The Weldon FOP Research Fund at the University of Pennsylvania. Every penny gets Dr. Fred Kaplan and his team one step closer to finding the cure! I feel in my heart that the cure will happen in my lifetime. I know he is getting closer. Please read the attached article.

I was diagnosed with FOP in the third grade. I am now a junior at The Pingry School in Martinsville, New Jersey. Over the past nine years different parts of my body have started to turn into bone. Even though my muscles have turned into bone in key places throughout my body it does not stop me from doing my favorite things: going to concerts, team manager for school sports, and just being a typical 17 year old. I want you to know that I am living my life to the fullest. My strength comes from my family and my friends; I won't let FOP stop me.

In April 5, 2009, I turned seventeen and I passed my drivers test on the first try! I have a car that is adapted for me. My independence means so much to me. Being able to drive means I can go anywhere without feeling the need to ask my parents. At times it is hard for me to keep up with my friends, but I feel so lucky to have friends that have been amazing and understand the difficulties I go through.

I am going to do what ever I can this year to help raise awareness and funding for Dr. Kaplan. I am starting by writing this letter to you, I am also planning a Chipwich Sale at my school and we now have a Weldon FOP "Cause Page" on Face Book. I hope you will make FOP your favorite charity and help me spread awareness. To find out what our family has been doing in raising awareness, please visit my website at www.weldonfop.org. Thank you so much.

My heart is full of hope,

Whitney Weldon

Donate Online or if you would like to help: checks can be made out to: The Trustees of the University of Pennsylvania, Medical Center Development, 3535 Market Street, Suite 750, Philadelphia, PA 19104-3309. Please write Weldon FOP on the memo line. You can also give directly by credit card to University of Pennsylvania

This Following is a reprint of an article from the Star Ledger by Amy Ellis Nutt

As he rode the train into work on the morning of Sept. 11, Stephen Roach had no idea that the sheaf of papers he carried inside his briefcase would become, in one brief shattering moment, his legacy.
Roach was vice president and director of sales for Cantor Fitzgerald Securities and had an office on the 105th floor of One World Trade Center. He was also a man who loved causes, especially the difficult ones. Before he died in the attack on the Twin Towers, Roach's most recent cause was raising awareness of an extremely rare and incurable bone disease called Fibrodysplasia Ossificans Progressiva, or FOP. When he left his home in Verona on that second Tuesday in September, Roach was carrying with him articles about the disease and a proposal he was working on for a way to raise money for a cure.

On October 30, 1995, Harry Eastlack arrived for a two-day symposium at the Wyndham Franklin Hotel, in Philadelphia. Forty-three families of people with fibrodysplasia ossificans progressiva, or FOP, were joining a high-powered assortment of orthopedic surgeons, molecular biologists, geneticists, and other doctors and scientists in hopes of making some sense of this puzzling disease. Harry's sister and her husband volunteered to entertain the children afflicted with FOP and their siblings while their parents attended professional sessions and swapped experiences. Harry himself played no active role. He had died in 1973. Yet his silent presence revealed the tragedy and the challenge of FOP more eloquently than any chart, slide, or clinical description ever could. Harry Eastlack normally dwells in a glass case in the Mütter Museum, at the College of Physicians of Philadelphia, not far from the death cast of Chang and Eng, the original Siamese twins, and a host of other anatomical curiosities. Before Harry died, six days shy of his fortieth birthday, he bequeathed his body to his treating physicians.
higgens_smallBAY HEAD -- Area bibliophiles will have an opportunity next week to meet a well-known author and, at the same time, help in the search for a cure for Fibrodysplasia Ossificans Progressiva [FOP] -- an extremely rare, progressive disease that usually strikes in early childhood.

Mystery writer Carol Higgins Clark will visit All Saints Church on Aug. 27 for a brunch, speaking engagement and book singing to benefit the Weldon FOP Research Fund, named for 11-year-old Whitney Weldon, whose family spends their summers in Bay Head.The diagnosis Whitney's mother, Hillary Weldon, said Whitney was diagnosed with FOP as a 9-year-old. According to the International Fibrodysplasia Officians Progressiva Association [IFOPA], the earliest documented cases of the disease -- in which soft connective tissue progressively turns to bone -- date back to the 17th century. FOP is rare, affecting an estimated one in 2.5 million people. Mrs. Weldon said research thus far has attributed the cause of the disease to a "mutated gene.""It's [the disease] a freak of nature," she said. FOP, which worsens as affected people age, can impact the neck, spine, chest, shoulders, wrists, elbows, hips, jaw. and ankles. The disease affects mobility as muscles, tendons and ligaments are slowly replaced by bone. "FOP is the only known condition where one organ -- muscle -- changes to another organ -- bone," Mrs. Weldon explained. "There's a whole second skeleton growing in Whitney's body."Not only is there no cure for FOP, Mrs. Weldon said, but there is also no treatment to slow its progression."If no cure is found, Whitney will become ... immobile."Although FOP itself is not usually terminal, Mrs. Weldon said many people afflicted with the disease die as the ever-growing bone puts additional pressure on vital organs such as the lungs or heart.Children stricken with FOP appear normal at birth with the exception of, as Mrs.Weldon put it, "a short, stubby [big] toe."She said in normal child development, bones grow from the head to the toes then growth stops. In children with FOP however, "that switch never turns off.""It starts growing from the head down again," she explained.Mrs. Weldon said

The following is and excerpt from an article published in the Westfield Ledger on February 27th 2003.

Grammy Night and Ashanti Sweep Weldon, School Pal Off Their Feet

By MICHELLE H. Le POIDEVIN

Specially Written for The Westfield Leader and The Times

grammysWESTFIELD – Ten-year-old Westfielder, Whitney Weldon's appearance on the 45th Annual Grammy Awards last Sunday was more than a case of being at the right place at the right time. For five hours, Weldon waited patiently at Borders bookstore in the Watchung Square Mall for R&B superstar Ashanti (Douglas) to sign autographs. Whitney's copy of Scholastic magazine's
Spanish issue with Ashanti on the cover had caught the singer's eye. During a telephone interview from The Pingry School's Lower School in Short Hills, where Whitney is a fourth grader, she told The Westfield Leader and The Times that Ashanti wanted to know where she got the magazine edition. Ashanti's makeup artist took Whitney's telephone number and later spoke her mother, Hillary Weldon, who mentioned that the youngster suffered from FOP (fibrodysplasia ossificans progressiva – a genetic condition which involves the transformation of muscle into bone, and later a second skeleton). Next, Ashanti's mother, Tina Douglas, contacted Mrs. Weldon and proposed the idea that Whitney might want to join the superstar for her onstage performance on Grammy night. Mrs. Weldon, who gleefully accepted the invitation, mentioned Whitney's best friend, Mackenzie Roach of Verona, whose father, Stephen Roach, died on 9/11 while raising funds for FOP and working to establish a fund for the condition. Basking in the Grammy afterglow, Whitney and Mackenzie, who is also a fourth grader at Pingry, chatted excitedly about their performance the evening before. Though Whitney had been under the weather the Friday before the performance, she joined Mackenzie in agreeing that though the rehearsals at Madison Square Garden were long and exhaustive, they were "fun" above all. Whitney, who said that she listens to a lot of different kinds of music, reported, "It was cool and exciting being on stage in front of thousands of people." While Ashanti sang "Dreams" off her self-titled CD, a string of youngsters, holding hands and dressed in different kinds of professional  uniforms, piped in with their voices and wide grins, encircling the superstar to the end of her song. Both Whitney and Mackenzie sported doctor's uniforms, which were randomly assigned by costume/prop personnel.

"I got to say 'Hi!' to Ja Rule," revealed Whitney, adding that Nelly, Vanessa Carleton, John Mayer, 'NSYNC, Kelly Rowlands of inde-


What is FOP?

FOP in an abbreviation for Fibrodysplasia Ossificans Progressiva ( fī'brō-dĭs-plā'zhə ŏ-sĭf'ĭ-kānz'  prō'grĭ-sī'və) previously known as Myosis Ossificans Progressiva. 

FOP is a rare and distressing medical condition where bone forms in muscles and other soft tissues of the body.

Whenever extra bone is formed across the joints it restricts movement. It is a progressive disease and there is no cure. It does not effect a persons intelligence. 

FOP affects 1 in 2 million people worldwide. It has no ethnic or religious pattern. 

There has been 700 confirmed cases across the globe from an estimated 2500. 

There are 285 known cases in the United States.

Whitney's Story