Sample Letter

Use the following letter as a guide for your correspondence. Be sure to personalize the letter to the extent that you feel comfortable with.


Dear [your United States or State elected official]:

I am writing to you as a constituent of this great state of _______ and on behalf of the International Fibrodysplasia Ossificans Progressiva Association (IFOPA). The IFOPA is a non-profit-organization that is committed to finding a treatment and cure for a rare genetic bone condition known as FOP.

FOP is a disorder in which bone forms in muscles, tendons, ligaments and other connective tissues, which over time, completely immobilizes the body. It is the only condition known to mankind where one tissue (muscle) is totally replaced by another tissue (bone). It is the goal of IFOPA to support medical research that will uncover the answer to this puzzling condition.

In addition, FOP research will uncover discoveries that will has the potential to effect millions of lives, specifically those who suffer more common bone related conditions such as arthritis, osteoporosis, hip replacements, post-amputation treatment, fracture treatment, certain spinal cord injuries and some heart valve disorders.

In July 2005 the IFOPA held a bi-partisan reception in the LBJ room in the United States Capitol sponsored by Senator Lautenberg and Senator Santorum. In attendance were FOP patients from Connecticut, New Jersey, New York, Maryland and Virginia as representatives of their states and all of the other patients afflicted with FOP across  America.

In closing, I am writing to ask for your support in securing funds for the FOP Research Laboratory at the University of Pennsylvania, which is led by Frederick S. Kaplan, M.D. Dr. Kaplan is Chief of the Division of Orthopaedic Molecular Medicine and the Director of the Center for Research in FOP & Related Disorders.

Your support is imperative in order to raise public awareness of FOP, to prevent the common misdiagnosis of this condition, to improve the lives of those afflicted with FOP, and to secure funding to further FOP research.

If you have any further questions or would like more information about how you can help the FOP cause, please feel free to contact me at your convenience. For more information about FOP, please visit the IFOPA web site at


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