The POHA has joined IFOPA  in sharing educational material created by PeerView.  PeerView educates the medical professionals that work with patients with bone conditions such as POH and FOP.  Both diseases are getting more well known which ulitimately gives all of our patients a better chance for a cure.  Please take the time to read or share the information and video below.

#Healthcare workers, make sure you do not miss the linked video below! Lincoln, an adolescent with #FibrodysplasiaOssificansProgressiva (#FOP) and Trish, his mother, share their personal experiences with diagnosis and management, and provide insight on the tools and resources that they have found helpful. This video was produced with our friends @PeerView, @International FOP Association (IFOPA), and @The American Society for Bone and Mineral Research and there is more to come! Be sure you share it with your patients! https://bit.ly/3p9Gl6f #BoneDisease #RareDisease #FOPAwareness #MedEd #IFOPA 


Like POH, #FibrodysplasiaOssificansProgressiva (#FOP) is an ultra-rare disorder of abnormal bone growth, with potential confusion between them. To help clarify the distinctions, #FOP Richard Keen, PhD, FRCP, and Edna E. Mancilla, MD, discuss the pathophysiology, prevalence, and burden of FOP, as well as its manifestations and common misdiagnoses, such as POH.


In addition to a patient interview and 3D animation, the activity features downloadable Practice Aids, including one on differential diagnosis of FOP. Developed with partners @PeerView, The @International FOP Association (IFOPA), and @The American Society for Bone and Mineral Research. https://bit.ly/3LAtNgz #IFOPA #CureFOP #BoneDisease #FOPAwareness #Healthcare #MedEd





It is with great appreciation that we introduce our newest board members to the POHA.  Please welcome Pamela Kurkul, Dawn Bedford and Carlin Buchanan.  Each new member comes to us with enthusiam and their own skill set to help us with our mission to ultimately find a cure for POH.  Thank you and let's get to work!



It is with great sadness that we share the passing of one of our founding members, Fred Gardner.  Fred B. and his wife Joan, along with their family started the POHA in 1995 after their granddaughter was diagnosed with POH.  They rallied the 35 or so members at the time and over the next 20 years they raised over $1 million for POH research.  The POHA is forever grateful for the drive, endless work and sacrifice of Fred and his family.  Fred is the reason we are the orgaqnization we are today and his legacy will live on in our efforts to find a cure for POH.


Fred B. Gardner

Fred B. Gardner, 92, avid golfer and lifelong Cubs fan, passed away peacefully in his home on November 7th.  Fred was married to the love of his life, Joan Costello Gardner, for 64 ½ blessed years.  After serving in the US Army, Fred had a long career in commercial real estate with the Equitable Life Assurance Society followed by the University of Chicago. He was an amazing husband, father, grandfather, uncle, brother, friend and mentor to many. 


Fred was a loving father of Tom (Alice) Gardner, Beth (Len) Piersialla, Cathy Jacobs (Bill Izzo), Ginny (Rob) Stablein, Fran (Eric) Schlesinger and Steve (Wendy) Gardner.  He was the proud grandfather of Brenda Gardner, Emily, Kevin and Jason Piersialla, Tim (Meghan), Ryan, Megan and Katelyn Jacobs, Matt, Erin, Pat, Kyle, Eric and Sean Stablein, Rebecca, Annie, Rachel and Brian Schlesinger, Taylor, Madi, Brady and Riley Gardner.  He was preceded in death by his sister Dorothy Kelly and brothers Herb and Frank Gardner. He was the fond uncle and brother-in-law of too many to name.  


To the end of his life, family and faith were the 2 most important things to him.  He had the innate ability to make everyone around him feel special.  He was the anchor for his family and arranged vacations and adventures that bonded the family together in ways seldom seen.  He was a role model for his grandchildren and they cheered him on as he slowed down, just like he cheered them on throughout their lives. 


In lieu of flowers, please donate memorials to POHA the 501(c)(3)organization Fred started in 1995 for medical research for POH (pohdisease.org), 1460 Bolingbrook Drive, Columbus, Ohio 43228. 


Services pending at this time through Friedrich-Jones Funeral Homes and Cremation Services (www.friedrichjones.com), Naperville, Illinois 





Rare Disease Awareness Day is February 28th!  How will you make others aware of POH?  Did you know the POHA funds a full time researcher every year by dedicating $50,000 to the University of Penn?  Can you help us continue this pracitce as a dedicated researcher means so much to finding out all we can about POH?  Please visit our FaceBook page for ideas on how you can help.



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