Our beloved Aunt Fran did some research and found out another way you can help donate money towards FOP research through the Combined Federal Campaign (CFC). If you work for the federal government, you can make a contribution to the National Organization of Rare Disorders code #11992. Here is a part of the email that Aunt Fran sent to me….
“I checked out the website for the National Organization for Rare Disorders. They have published information booklets for the medical community for nine of the disorders they deal with, but not for FOP. (http://www.rarediseases.org/programs/freebooklets) Here is a quote regarding the publication of such a booklet.
“Individuals or organizations wishing to discuss the possibility of creating a future booklet for this series should send an e-mail to jcampbell@rarediseases.org or call NORD and ask for Jean Campbell.”
With your knowledge and interest, maybe you could get the ball rolling. If I can help, I’ll be glad to also.
They only had one report on FOP on their website. They are very restrictive in its use, though. It is at:
http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Fibrodysplasia%20Ossificans%20Progressiva%20%28FOP%29“
I have contacted the IFOPA and asked if they would eventually be listed on the CFC. I have not heard back. In the meantime, any donations to the National Organization of Rare Disorders code #11992 will help those living with FOP.
Update: I received an email from the IFOPA. They are not eligible to be listed on the CFC. However they are actively looking other ways to get on the list. Just a reminder, if you would like to contribute, see if your company has a program to match your donation. You can even donate in the honor of Erin McCloskey.
