Tag Archives: Fibrodysplasia Ossificans Progressiva

7th Annual Morgan’s Ride Is Tomorrow

7th Annual Morgan's Ride

Sunday September 27, 2015
9:30am – 6:00pm
Hilltop AA Club

Pottle St, Kingston, Massachusetts 02364
Please join us for this ride. A 25 mile ride thought the back roads of the South Shore. Live band, food, raffles and more.. Funds raised go to the Morgan’s Fund. To help the fight against FOP.

For more information please visit the Facebook Page

Fundraiser for the Morgan Fund

Saturday March 28, 2015
At 7:00pm

East Bridgewater Commercial Club
East Bridgewater, MA 02333

To Help raise awareness about Fibrodysplasia Ossificans Progressiva (FOP)
All Proceeds will benefit the Morgan Fund in Honor of Morgan Lawler.

More Information
This event is for adults.
Tickets are $20.00 per person.
There will be raffle items available.

Donations can be made out to:
The Morgan Fund
P.O. Box 96
East Bridgewater, Ma 02333

Please feel free to invite your friends.
Facebook Page

6th Annual Morgan’s Ride!

6th Annual Morgan's Ride

6th Annual
Morgan’s Ride


Motorcycle Ride – Live Entertainment *Better than Nuthin’* – and More
*Bike not required to participate, EVERYONE IS WELCOME!*

Sunday, September 21, 2014
Registration at 9:30am — Ride leaves at noon

The Hilltop Athletic Club
65 Pottle Street
Kingston, MA

All Proceeds to benefit the Morgan Fund in Honor of Morgan Lawler.
Morgan Suffers from FOP (Fibrodysplasia Ossificans Progressiva)

How Much?
$20 Donation per person
For Donations or raffle items please contact Rick & Samantha Wood

Facebook Page

Fibrodysplasia Ossificans Progressiva

What is Fibrodysplasia Ossificans Progressiva (FOP)?
One of the rarest, most disabling genetic conditions known to medicine, it causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another.

An example of the typical progression of FOP:
Spontaneous flare-ups of the disease arise in defined temporal and spatial patterns, resulting in ribbons and sheets of bone that fuse the joints of the axial and appendicular skeleton, entombing a patient in a skeleton of heterotopic bone. These photos show an individual with FOP through his lifetime.

How would understanding the cause of bone formation in FOP help others?
The information obtained from studying this disease will have far reaching implications for the treatment of common disorders such as fractures, osteoporosis, hip replacement surgery, and other forms of heterotopic ossification that occur in trauma and burn victims.

Demographics of FOP:

  • Genetic disease affecting 1 in 2 million people
  • No ethnic, racial, or gender patterns
  • 800 confirmed cases across the globe
  • 285 known cases in the United States

Clinical Characteristics of FOP:

  • Characteristic malformations of the great toe
  • Flare-ups occur spontaneously or following bodily trauma such as: childhood immunizations, falls while playing, viral illnesses
  • Misdiagnosed in a majority of cases as cancer
  • Surgery makes the condition worse
  • There are no effective treatments

Finding a Cure and Treatment for FOP:

  • Researchers at the University of Pennsylvania School of Medicine, the only laboratory in the US dedicated to FOP research, announced the Discovery of the FOP Gene in Nature Genetics in April 2006.
  • 10,000 sq. ft. of shared research space in the Department of Orthopaedic Surgery
  • 3 principal investigators with 15 post-doctoral fellows, students, scientists, and staff
  • Funds spent on research – Approx. $1.5 million/year
  • 75% from FOP family fundraising and donations
  • 25% from institutional support (NIH/NIAMS, Orthopaedic Research and Education Foundation)