What you may have known is that I sat on the NTSAD Board of Directors in a few recent years and have been friends with many of you for many more years than that.  What you probably didn't know however, is that at this year's NTSAD Annual Family Conference, a presentation on fundraising really sparked my personal interest in Advocacy and may be a catalyst for the future development of an NTSAD Advocacy Program focused on educating and influencing national political figures about NTSAD and perhaps even sparking a national conversation on rare/orphan diseases, which are nationally represented by NTSAD.

While listening carefully to Stephanie Bozarth's (President, National MPS Society) presentation on advocacy at the NTSAD fundraising discussion during this year's NTSAD Family Conference, I was inspired to help develop a similar Advocacy Program for NTSAD, through which national political figures can be educated about NTSAD.  While I think that it is certainly true that the conditions which NTSAD represents are small in terms of the numbers of affected individuals and families. Perhaps that explains much of the reason why it has recently been so difficult and an uphill struggle to get private industry and governmental support for funding research and development for potential solutions to many of the challenges families affected by the conditions which NTSAD represents. I also think it is an undeniable truth that once they are educated about these conditions, nationally elected politicians will find it very difficult to oppose public support for organizations like NTSAD.

This, I think, is the key.....making nationally elected political representatives aware of the conditions which are represented by organizations such as NTSAD. I hope to soon learn about how to put this type of advocacy in motion for NTSAD by learning about Ms. Bozarth's advocacy on behalf of the National MPS Society.

Click below and read about another parent's advocacy story in last week's "Topic of the Week"