Thursday, April 23, 2009

Home from Lobby Day on the Hill in DC

So DC was an amazing experience and I hope to be able to go back every year. Not only was this my first time to DC but it was my first time as a lobbyist too. So I got to meet a lot of wonderful people and some of them pretty much live in my back yard. I hope to stay in touch with a lot of new faces.

So on Tuesday is when we had to go do our "asks" up on Capital Hill.

We met with Sen. Richard Durbin (staff), Sen. Roland Burris (staff), Rep. Janice Schakowsky (staff), and Rep. Melissa Bean (staff). Even though we didn't get to meet with the Senators or the Representative's themselves it was still a great experience being able to meet with there staff who specialize in the health care field.

I got to share my story and I am going to share will all of you too.
I am here today on behalf of my three year old son Sean who suffered a stroke before he was born.

Because of lack of research and awareness it took us 2 years to get a diagnosis and we still don't know why it happened or if it could happen again,

As shocking as it may sound 1 in every 4000 babies suffer a stroke each year and many don't know why. That is why I am asking you to sign the letter to the president so that more money can be spent on research and prevention and find out why strokes are happening to children. Because everything we know about adult strokes does not hold true for children.

My son will have a life long diagnosis as a stroke survivor which means always having a pre-existing condition, and high out of pocket expenses, therapy maximums so that is why I am asking you to pass meaningful health care reform that is affordable, accessible, and adequate.

It was an emotional but rewarding trip and can not wait to do it again, so I hope the American Heart/Stroke Association invite me to come again because together we can make a difference.

Please contact your local Representatives/Senators and ask them the asks in red above because we all need to ask and make them aware.

The NIH currently only invests 1% of funding into stroke research and who knows what % of that is towards pediatric (not much I can assume) so if we can get the NIH budget double in the next 10 years like Obama is wanting just maybe that 1% will increase and more research and prevention can go towards pediatric stroke.

So will you please all send letters to your representatives and senators. And I will be following up with my and hope to build and deepen relationships with all of them. I also passed out Sean's flyer that the AHA/ASA made to each visit (a few posts down). I also wanted to share a few pictures with all of you, please let me know if anyone has any questions!


Rachael said...

welcome back! it sounds like it was a great trip {and in cherry blossom season too}. i thought i signed a petition a while ago, but i will try to do more to help.

The Andersons said...

Glad to see you home! Thanks for going and spending your precious time there! You, Sarah, and everyone else make such a difference in the lives of us all!

Chele said...

Welcome back! I thought about you the other day and was hoping everything was going well.

Of course, I will write my representatives to help get and keep the word out there.

Anonymous said...

I had so much fun with you at Lobby Day! I think we made a tremendous difference, and I can't wait to do it again. SO glad all your meetings went well (bummer you didn't get to meet any of the legislators year!).

Mommy07 said...

So proud of you, how great to be an activist for such an important cause!!!! Through my experience w/brain injury and babies I am now aware that babies have strokes too- just one more person who can spread the word! Keep up the good work mama!

Amanda said...

Welcome back!!!

Not to sound totally cheesy, but I'm so proud of you (and Sarah)! I feel lucky to have met and to know such wonderful advocates!!!

You guys are awesome! Next year I hope to join you!!

Ellen said...

Erin, thank you from the bottom of my heart for doing this. I am also so proud of you. I hope to be able to do something like this someday. In the meantime, I will certainly write my legislative reps.

jag said...

You are such a brave advocate for your son and so many others! VERY proud to have you as a blogging buddy!