POHA - The Progressive Osseous Heteroplasia Association
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:
- Support research to identify the cause of POH.
- Develop effective treatments for those with POH.
- 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, 2012. In total, the POHA has committed in excess of $1,000,000 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.
Several POH families 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, casino nights, 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.
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
- Promotes public awareness of POH and the value of research into rare diseases
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:
Progressive Osseous Heteroplasia Association
5327 Westpointe Plaza Drive
517 Risley Road
Brigantine, NJ 08203
Telephone: 614.887.POHA (7642)
Christine Fennell, President
Lori Lee, Treasurer
Sandra Roth, Vice President
Lanton Lee, Secratary
Brian Fennell, Board member
Anita Rice, Board member
Michael Rice, Board member
Cara Watkins, Board member