Consider the following when writing a letter to your elected representative(s). Click here to view a sample letter.

• Find the names of your local or state officials. If you don't know the names of your Senators, Representatives or State Governor, call your local voter registration office or visit USA.gov.

• Be brief and to the point. Clearly state who you are and identify the main issue that you are writing about: increasing awareness and funding for FOP research!

• Add support to your information by including your own personal story. Introduce yourself as either a person with FOP or as a friend, family member or loved one of a person with FOP. Describe how FOP has negatively impacted your life and the life of your loved one. If you choose to include this information, this section should be no more than a few paragraphs.

• Include this important statement: “Although FOP is rare, a treatment for FOP will be relevant to every condition that affects the formation of bone and every condition that affects the formation of the skeleton. FOP research will benefit people who suffer from 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.”

• Ask for a specific favorable commitment from your legislator in your note.

• Express your thanks. Always be polite and thank your official for taking the time to read your letter. Let them know that any help that they can offer would be greatly appreciated. You can also state that you would be eager to hear about any suggestions that they could provide you.

• Include your full name and mailing address on the email or letter and be sure to personally sign each copy of the letter.

• Make copies of everything. This will help keep you aware of what's been done and what still needs to be done.
  
  
• Keep us informed of your successes. If you receive a legitimate response from an elected official, please let us know. Sending copies of your original letter and your response to us by mail at: IFOPA, 1520 Clay St. Ste. H-2, North Kansas City, MO 64116 USA, or fax it to (407) 365-3213. If you sent and/or received an electronic response, send a copy to [email protected].
  
  
• Remember, don't forget to be brief! The letter itself should be no longer than a page.