History of the POHA
The History of the POHA: Progressive Osseous Heteroplasia Association
Major Events in History of POHA
Progressive Osseous Heteroplasia (POH) is discovered and named by Dr. Frederick Kaplan at the University of Pennsylvania Medical School in Philadelphia.
Katelyn Jacobs visited Dr. Kaplan in Philadelphia and was diagnosed with POH.
The Progressive Osseous Heteroplasia Association (POHA) was incorporated in the State of Illinois.
The first POHA meeting was held in Indian Head Park, Illinois.
First POHA fundraiser was held (Bowl-a-thon) and made $3,000.
IRS approved POHAs 501 (c)(3) status making all donations fully tax deductible.
First POH International Workshop was held in Philadelphia in conjunction with an FOP Symposium. Three POH patients and their families attended plus 60 doctors/scientists. The POH Collaborative Research Project was formed at the University of Pennsylvania with the purpose of finding a cure for POH.
First Katelyn Foundation Benefit for POH research was held in Chicago and attended by 650 people.
The “No Bones About It” fund raising Run/Fun Walk was held in Frenchtown, NJ by the Ian Foundation/POHA.
POHA approved and funded the first ever POH research Grant of $100,000 to the POH Collaborative Research Project at the University of Pennsylvania, covering the 2 year period July 1, 1996 to June 30,1998. Dr Fredrick Kaplan, M.D. and Dr. Eileen Shore, Ph.D. were the co-investigators
Through the efforts of Sandy Roth, the mother of a POH patient, POHA is selected as the 1996/1997 Charity of the New Jersey State Association of Student Councils.
POHA published “What is POH” a 46 page guidebook for POH families and other interested parties. This guidebook has been updated to 2002.
Second Katelyn Benefit for POH research, attended by 600 people, was held in Chicago.
POHA approved a new 3 year $150,000 extended research Grant to the POH Collaborative Research Project at the University of Pennsylvania covering the period July 1,1998 to June 30, 2001.
The discovery of the gene (GNAS1) responsible for POH.
The second POH Workshop in Philadelphia was attended by 9 patients and their families plus approximately 200 doctors and scientists from around the world.
Official announcement and publication of articles in medical journals about the identification of the damaged gene (GNAS1) responsible for POH. Researchers from the University of Pennsylvania, John Hopkins University and the Shriners Hospital in St. Louis (Washington University) participated in the event.
Third Katelyn Foundation Benefit for POH research was held in Chicago on February 17.
POHA approved a new 3 year $150,000 research grant to the POH Collaborative Research Project extending the period to June 30, 2004.
The National Institute of Health (NIH) approved a 3 year $728,000 POH research grant to the University of Pennsylvania.
The Italian Progressive Osseous Heteroplasia Association (IPOHA) was established by the Doctor/father of a POH patient to raise tax-exempt funds in Italy for POH research.
The New England Journal of Medicine published an article by members of the POH Collaborative regarding the discovery of the gene (GNAS1) responsible for POH.
Johnson & Johnson approved a 3 year POH research grant to the University of Pennsylvania.
Dr. Roberto Bufo forwarded a $3,500 check representing the 1st year of fund raising for the recently formed IPOHA (Italian POHA),
A POH web site (pohdisease.org ) is now in operation There are currently approximately 50 patents identified with POH and the POH Collaborative has been expanded to include 29 researchers at 15 hospitals and universities in 5 countries.
The National Institute of Health (NIH) extended their POH research Grant for another 5 years
Fundraiser by Lyons Township Swim Team benefiting the Katelyn Foundation for POHA raised $4,600.
An anonymous donor’s final payment of a 5 year pledge of Waste Management/Coca-Cola stock resulted in a total donation of approximately $25,000 for the Katelyn Foundation – POHA
The 8th annual Tom Sullivan Family Poker Night for POHA raised almost $2,000 for a combined total of over $15,000 for the 8 year period.
POHA was awarded another 5 years of Illinois sales tax exemption.
Funding of POHA’S 10th year Grant increases POHA’s total Research contributions to over $500,000
July 26, 2005
New York Times (Science section) contained an article about Osteoporosis and how bone marrow cells are replaced by fat as people age. While not the focus of the article Dr. Kaplan and Dr. Eileen Shore‘s research is mentioned and Dr. Kaplan is quoted.
A Fundraiser/Picnic with 450 people in attendance raised $33, 500 for the Kathelyn Foundation (POHA)
Discovery of the muted gene that triggers FOP (POH’s sister disease)
POH Guidebook for Families was translated into Italian and added to the website
POHA approved another 5 year Research Grant ($50,000 per year) to the POH Collaborative Research Project at the University of Pennsylvania, covering the period July 1, 2007 to June 30, 2012
POHA received a check for $4,100 from the IPOHA increasing their total donations from Italy to over $20,000 in the last 6 years. Congratulations to Dr. Roberto Bufo and family
Congratulations to Lori & Lanton Lee and their daughter Margaret for raising over $20,000 for POHA (Walk for Margaret).
Congratulations to Chris & Brian Fennell and their daughter Erin for raising over $35,000 for POHA (Casino Night for Erin’s Cure)
The Italian version of “Thesis of Specialization: POH” a Case Study by Dr. Roberto Bufo, parent of a POH child
The IPOHA contributed $14,000 to POH research
The current Officers and Board of Directors of POHA announce they will not seek reelection in 2011. Therefore a completely new Board will have to be elected at the November 2010 Meeting.
The IPOHA advised us that because of the Italian Government becoming more involved in the fund raising it will be necessary to give directly to the POH Research Lab.
Cara Watkins became the first POH patient to hold a Fund Raiser. Atta girl Cara