POHA-The Progressive Osseous
Heteroplasia Association
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Officers | History | IPOHA
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March 1994
Progressive Osseous Heteroplasia
(POH) is discovered and named by Dr. Frederick Kaplan at the
University of Pennsylvania Medical School in Philadelphia.
July
1994
Katelyn Jacobs visited Dr. Kaplan in Philadelphia
and was diagnosed with POH.
April 1995
The Progressive Osseous Heteroplasia
Association (POHA) was incorporated in the State of Illinois.
June
1995
The first POHA meeting was held in Indian Head Park,
Illinois.
August
1995
First POHA fundraiser was held (Bowl-a-thon) and
made $3,000.
September 1995
IRS approved POHAs 501 (c)(3)
status making all donations fully tax deductible.
October 1995
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.
March
1996
First Katelyn Foundation Benefit for POH research was held
in Chicago and attended by 650 people.
April 1996
The “No
Bones About It” fund raising Run/Fun Walk was held in Frenchtown,
NJ by the Ian Foundation/POHA.
May 1996
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
September
1996
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.
April 1997
POHA published “What
is POH” a 46 page guidebook for POH families and other
interested parties. This guidebook has been updated to 2002.
February 1998
Second Katelyn Benefit for POH research, attended
by 600 people, was held in Chicago.
July 1998
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.
Summer 2000
The discovery
of the gene (GNAS1) responsible for POH.
September 2000
The second
POH Workshop in Philadelphia was attended by 9 patients and their
families plus approximately 200 doctors and scientists from around
the world.
November 2000
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.
February 2001
Third Katelyn Foundation Benefit for POH
research was held in Chicago on February 17.
July 2001
POHA approved
a new 3 year $150,000 research grant to the POH Collaborative
Research Project extending the period to June 30, 2004.
Fall
2001
The National Institute of Health (NIH) approved a 3 year
$728,000 POH research grant to the University of Pennsylvania.
October
2001
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.
January 2002
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.
March 2002
Johnson & Johnson
approved a 3 year POH research grant to the University of Pennsylvania.
November
2002
Dr. Roberto Bufo forwarded a $3,500 check representing the
1st year of fund raising for the recently formed IPOHA (Italian
POHA),
April 2003
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.
Fall
2004
The National Institute of Health (NIH) extended their POH
research Grant for another 5 years
November 2004
Fundraiser by
Lyons Township Swim Team benefiting the Katelyn Foundation for
POHA raised $4,600.
March 2005
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
March 2005
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.
March
2005
POHA was awarded another 5 years of Illinois sales tax exemption.
July
2005
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.
September 2005
A Fundraiser/Picnic with 450 people in attendance raised $33,
500 for the Kathelyn Foundation (POHA)
April 2006
Discovery of
the muted gene that triggers FOP (POH’s sister disease)
Winter
2007
POH Guidebook for Families was translated
into Italian and added to the website
June 2007
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
April 2008
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
May 2008
Congratulations to Lori & Lanton
Lee and their daughter Margaret for raising over $20,000 for
POHA (Walk for Margaret).
October 2008
Congratulations to Chris & Brian
Fennell and their daughter Erin for raising over $35,000 for
POHA (Casino Night for Erin’s Cure)
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