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Rare Disease Day 2-29-12

On the ultimate rare day – February 29th – people all around the world will be observing Rare Disease Day. The International FOP Association (IFOPA) is one of 630 US organizations that partner with NORD (the National Organization for Rare Disorders) in supporting this special day to raise awareness about rare diseases such as Fibrodysplasia Ossificans Progressiva (FOP).

Since its inception in 1988, the IFOPA has been partnering with NORD to raise awareness about FOP. NORD is a non-profit organization representing all Americans affected by rare diseases. FOP is one of the rarest, most disabling genetic conditions known to medicine. FOP causes bone to form in muscles, tendons, ligaments and other connective tissue.

On Rare Disease Day, we encourage you to educate others about FOP and share the IFOPA's mission to support families, fund research and FIND A CURE! The IFOPA would be honored to receive donations to commemorate this special day. Click here to donate to Rare Disease Day Fundraiser.

 

Orphanet Journal of Rare Diseases update!

An updated abstract and article regarding FOP has been posted to the website of Orphanet Journal of Rare Diseases. We greatly appreciate Dr. Pignolo, Dr. Shore and Dr. Kaplan for providing this update and we thank Malcom Munro and Marie Hallbert for working with the OJRD and FOP Lab to make this possible.

Click on this link http://www.ojrd.com/content/6/1/80/abstract to view the abstract and article.

 

“Mud Run” Raises over $25,000 for FOP Research

A pair of Iowa FOP families joined forces to generate more than $25,000 for the IFOPA at the 33rd annual Living History Farms race held November 19, 2011 in Des Moines, IA.

The families of FOP members Kyle McWilliams of Victor, IA, and Lincoln Wheelock of Des Moines, IA combined to enter 31 participants in the race billed as the biggest cross country race in North America. Runners were asked to generate pledges as they competed in the seven mile off road race on a trail that runs through rugged terrain, numerous creeks and streams, fields, and steep embankments. Over 7,500 runners participated in the race that has been profiled in Runner’s World, Running Times and other magazines.

Following the event, runners and family members gathered at the home of Lee and Trisha Wheelock in Des Moines for lunch and fellowship.

Kyle is the son of Curt and Margaret McWilliams and is a junior at HLV Community High School in Victor, IA. Lincoln attends preschool and is the son of Lee and Trisha Wheelock of Des Moines.

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Runners and family pose with FOP member Kyle McWilliams for a group photo prior to the start of the Living History Farms race in Des Moines, IA  on November 19, 2011.

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Over 7,500 runners participated in the 33rd annual Living History Farms race, an IFOPA fundraiser conducted by the families of FOP members Kyle McWillams and Lincoln Wheelock.

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Runners Trisha Wheelock, Laura Kuechenmeister and Lee Wheelock enjoy a lighter moment during the seven mile race.

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Nick and Mallory McWilliams pause and refresh after completing the seven mile cross country course.

Thank you everyone for making this event a great success!

 

Genetic Technology Breakthrough

Genetic Technology Breakthrough: Proof-of-Principle for FOP Treatment

Editorial explanation of landmark paper published in the Thursday October 20, 2011 online edition of Gene Therapy a Nature Journal is available. Read how Dr. Fred Kaplan, Dr. Josef Kaplan and Dr. Eileen Shore have developed a new genetic approach to specifically block the damaged copy of the FOP gene in cells while leaving the normal copy untouched.

Click on the link below to read Dr. Fred Kaplan's and Dr. Eileen Shore's editorial explanation
Genetic Technology Breakthrough

Click on the link below to read the paper published in Gene Therapy a Nature Journal
Restoration of Normal BMP Signaling Levels

 

Research Breakthrough - Neurological Connection to FOP

The Nervous System and FOP

New insight into the neurological connection in FOP bone formation, and potential new treatment targets. Pieces of the puzzle are coming together!

Sensory Nerves Regulate the Innate Immune System and Amplify Heterotopic Ossification (PDF format)

Figure 1 Schematic: Neuroinflammatory Pathways in Heterotopic Ossification

New research findings recently published in two complementary articles have found a distinct connection between the sensory branch of the nervous system and the formation of Heterotopic Bone.  A very exciting new discovery! An editorial by Dr. Fred Kaplan, Dr. Eileen Shore and Dr. Bob Pignolo of The Center for Research in FOP and Related Disorders at the University of Pennsylvania describes the significance of these findings as it relates to FOP.

Sensory Nerve Induced Inflammation Contributes to Heterotopic Ossification

Article published by Baylor University describes the connection between the sensory nerves and the regulation of the immune system. Two researchers/authors of this article, Francis Gannon and Elizabeth Olmstead-Davis have previously worked in the FOP laboratory at the University of Pennsylvania.

Substance P Signaling Mediates BMP Dependent Heterotopic Ossification

Article published from Northwestern University in a collaborative research effort with the University of Pennsylvania describes the connection between a neuro-inflammatory factor (Substance P) and FOP/Heterotopic Ossification.

 

Exciting Update, Great Hope...

Promising new research reveals a potentially highly effective treatment for  Fibrodysplasia Ossificans Progressiva.  Read more about this exciting discovery in the following documents:
Click here to read:  The Twentieth Annual Report of the Fibrodysplasia  Ossificans Progressiva (FOP) Collaborative Research Project (PDF format) 

Click to read (PDF format): News & Views Article April 2011 Article by Dr. Frederick Kaplan and Dr. Eileen Shore

   

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