Thursday, March 5, 2009

Fragile X Advocacy Day 2009


Fragile X Advocacy day on Capitol Hill was one of the most amazing experiences of my life! We had a day of training on the 3rd and then spent all day on the 4th meeting with our state representatives to advocate our agenda. Over 130 people from 35 states attended - the biggest advocacy day yet.

What was even more amazing was he support we received from freshman Representative Harper (R-Miss.). Representative Harper is the first person in Congress to have a child with Fragile X Syndrome. He is a remarkable advocate on Capitol Hill for our cause. Knowing we were all coming, he arranged to give us a private tour on the House Floor. This is the same place the President address joint sessions of congress and gives the State of the Union Address. All 130 of us gathered on the House Floor while Rep. Harper and Senator Delahunt (another champion of FX) spoke to us. After that we got a tour of some of the other rooms in the Capitol. It was an amazing experience.

After the tour we went on to our meetings with our Senators & Representatives. The Chair of Public Policy for the NFXF is from Michigan and it was great going to the meetings with him and learning. I always was disappointed I never got into politics, but now I've found my way - and what better cause could it be for.

What was also amazing was all the great people in the Fragile X community I met. We went out in groups for dinner Tuesday night and it was great being able to talk to people in other states. I was even able to speak with some of the leaders of the NFXF. I learned so much, not just about politics and the process, but also so much more about Fragile X and what is being done.

It was truely an amazing experience - and one I will be doing every year for the rest of my life.

I put a link to Congressman Harper's website that his Public Service Announcement, speech on the House Floor, and other information on the things he's doing for Fragile X.

I encourage anyone who can do it to attend an advocacy day - it is so empowering and life changing. Here is a quote that really means alot more to me now:

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has. ~ Margaret Mead

God Bless.

3 comments:

arjsc said...

Mike, you were a valuable addition to our team. I look forward to standing shoulder to shoulder with you to fight the good fight for our kids for many years to come.
Jeffrey Cohen
Chair, Public Policy
National Fragile X Foundation
j.cohen@fragilex.org

The Wilson's said...

What a cool experience and it is nice to hear about our representatives who have our children in mind. I wish I could have participated this year. We live in Maryland so it is just down the road for us, but it just wasn't in the cards. It was so neat to hear about advocacy day!

TheXMom said...

Sound like a wonderful experience and one I hope to have myself someday.