Let's Take a Fresh Look at HD Advocacy

A few things have changed since I last posted over a year ago. Louise Vetter is the new CEO of the Huntington’s Disease Society of America. I’ve relocated to Wilmington, Delaware. And I’ve joined the HDSA Board of Trustees. The Democrats have control of the Senate, House, and Executive branches of government. Yes, a few things have changed, so I’m sure there will be a lot to blog about this year.

Rather than focusing exclusively on universal healthcare, which will be an entertaining discussion later this year, I’d like to turn my attention to advocacy and how our small HD community can take advantage of the growing awareness of Huntington disease and the changes that are taking place at HDSA.

So what are the needs of the HD community? How do we meet those needs? What can the community do for itself if the infrastructure is in place? How can HDSA facilitate the building of the infrastructure? What services does HDSA need to directly provide?

It seems to me that a good place to start this project is to contact and learn from those who are doing advocacy well and then develop an approach to help others to be able to do the same.