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POHA-The Progressive Osseous
Heteroplasia Association
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Officers | History
| IPOHA |
Our
Mission
The Progressive
Osseous Heteroplasia Association was formed in March, 1995, as
a not-for-profit 501(c)(3) tax-exempt corporation for the purpose
of raising funds to:
1. Support
research to identify the cause of POH.
2. Develop effective treatments for those with POH.
3. Ultimately find a cure for POH.
Additional
goals include educating families, friends, physicians, and communities
about this crippling disease. The POHA also provides moral support
and encouragement to families who struggle with POH. There are
no salaries, consulting or fund-raising fees associated with the
POHA.
Sufficient funds were raised by June 1996 to establish the first
two-year research grant for the study of POH. This research is
being carried out at The University of Pennsylvania School of
Medicine’s Laboratory of Molecular Orthopaedics in Philadelphia
under the direction of Dr. Eileen Shore Ph.D. and Dr. Frederick
Kaplan M.D. Additional research grants from POHA currently extend
through June 30, 2004. In total, the POHA has committed in excess
of $400,000 for POH research. This funding has played a significant
role in the discovery of the GNAS1 gene mutations responsible
for POH, and POHA desperately needs your help in raising funds
for continued research.
Research
funding for the POH laboratory is currently provided by grants
from the POHA, The Center for Research in FOP and Related Disorders,
The National Institutes of Health (the People of the United States),
and Johnson & Johnson, Inc.
Two POH families
(Illinois and New Jersey) have established foundations in their
children's names for the sole purpose of raising research funds
for POHA. They have successfully sponsored bowl-a-thons, 5K races,
yard sales, Shop & Share days at supermarkets, softball games,
funeral donations, plus encouraging United Way and direct donations.
Through the efforts of Sandy Roth, a POH parent, the Ian Foundation/POHA
was selected as the 1996/97 Charity of The New Jersey State Association
of High School Student Councils.
Education
Because of the rarity of POH, much misinformation still exists.
To help educate families, physicians, and the general public,
the POHA does the following:
- Operates
a resource center which serves as a central clearinghouse for
information on POH
- Publishes
What is POH? A Guidebook for Families,
the first comprehensive resource package written specifically
for families dealing with POH
- Maintains
a site on the World Wide Web so that information is easily accessible
to the public
- Fundraising
- Promotes
public awareness of POH and the value of research into rare
diseases
Questions
or Comments?
The POHA has welcoming information packets available for new patients
and their families. Hopefully, this will help them in learning
to live with this condition. If you would like to speak with a
POH parent or family member, have any questions regarding POH
or would like to help in fund raising please feel free to call
or write:
POHA OFFICE
Joan and Fred Gardner (grandparents of a POH child)
14031 S. Tamarack Drive
Plainfield. IL 60544-6356
USA
Tel: 815-524-5849
E-mail Info@pohdisease.org
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