About Whitney

whitney weldon

In 2001, at the age of nine, Whitney Weldon was diagnosed with a rare genetic disorder, Fibrodysplasia Ossificans Progressiva. FOP is the only known condition where one organ can transform into another, where muscles, tissues, and ligaments develop into bone. The disease is generally diagnosed in childhood and progressively disables the body, as new bone fuses joints and creates immobility. Whitney was referred to Dr. Frederick Kaplan, a scientist who studies FOP and her life long doctor.

With the help of 24-hour care, Whitney graduated from Georgetown University in the Spring of 2015. She is currently getting her Master’s in Public Relations and Corporate Communications at New York University. In her free time she created an Instagram account document handicap accessible places throughout New York City. You can follow along @concretejungleon4wheels.

About FOP

Unlocking the mystery

FOP or fibrodysplasia ossificans progressiva (fibro-dis-play-sha os-sih-fih-cans pro-gress-ev-a) means "soft connective tissue that progressively turns to bone." The earliest documented cases date back to the 17th and 18th centuries.
  • 1692: French physician Guy Patin met with a patient who had FOP and mentioned the encounter in his writings.

  • 1736: British physician John Freke described at length an adolescent whose diagnosis included swellings throughout his back.

  • 1900s: The disease became known as myositis ossificans progressiva, which means "muscle turns progressively to bone."

  • 1970s: The name was officially modified to fibrodysplasia ossificans progressiva by the late Dr. Victor McKusick of Johns Hopkins University School of Medicine, who is considered the father of medical genetics. The new name better reflects that other soft (or fibrous) tissues in addition to muscle (for example tendons and ligaments) are replaced by bone.

  • June 8, 1988: IFOPA is incorporated as a 501c3 non-profit organization with 11 FOP members. Learn more about the 11 Founding Members.

  • 1989: The FOP Collaborative Research Project is established at the University of Pennsylvania School of Medicine by Drs. Frederick Kaplan and Michael Zasloff.

  • April 2006: After 15 years of painstaking research, the FOP research team, led by the University of Pennsylvania School of Medicine, along with their international collaborators, pinpointed a single gene mutation -- one letter out of six billion in the human genome -- that causes the runaway bone growth of FOP. Learn more about this groundbreaking discovery. 

  • 2014: Clementia Pharmaceuticals Inc. begins a Phase 2 clinical trial of palovarotene, an experimental RAR- gamma agonist, in adults with FOP. 
Following the discovery of the gene, research efforts towards a treatment and a cure accelerated. The discovery of the FOP gene provides a highly specific target for future drug development that holds promise for altering not just the symptoms of the disease but the disease itself. It also allowed for the creation of animal models that can express the mutant gene, further enabling research and drug development.
Contact & Collaboration
For comments, collaborations or questions contact concretejungleon4wheelsnyc@gmail.com

Making a Difference

Raising Funds to Find a Cure

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Raising Awareness

Scooting around NYC finding everything that is wheelchair accessible

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