03/06/2012
Vance Taylor

Today started out with butterflies in my stomach that had nothing to do with the breakfast buffet.  I’m typically not the nervous type, but I awoke early this morning all too aware that in a short time, I would be addressing the conference participants.

Being that they are such an impressive group, my tummy couldn’t help but flutter a little.  The good thing is, the feeling didn’t last long, because before I knew it Valerie Cwik, MDA’s Interim President, had introduced me as the next speaker.

It was go time!

Looking out at the crowd, I had an interesting experience.  Instead of being intimidated by the number of people present (not to mention the magnitude of their individual accomplishments), I felt a wave of comfort come over me; I was among friends.

As I shared personal stories from my own life with the audience, I focused in on the following points:

• Ensuring that patient families are aware of the “latest and greatest” progress regarding clinical efforts enables them to have hope in the promise of that work.
• The more the general public is made aware of clinical efforts, the more inspired they will be to financially support this important work.
• The MDA must fill the crucial role of serving not only as a liaison between clinicians, patients and donors, but as the tip of the spear in the fight against neuromuscular diseases.

I then shared with the group my strong belief that as a neuromuscular community, our needs have never been greater; our respective roles have never been more important; and that by working together, through MDA’s leadership, we can achieve our common goals.  I told them that our time is now.

And it is.