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!