The bill was introduced

We did it.....for now I received an email saying late yesterday the Congenital Heart Futures Act was introduced in both houses of Congress! In the Senate, Senator Dick Durbin of Illinois led the charge joined by Senator Thad Cochran of Mississippi. In the House, the bill's lead co-sponsors were Representative Zach Space of Ohio and Representative Gus Bilirakis of Florida. We are thrilled that this groundbreaking piece of legislation has already received bipartisan support. To learn more about the bill visit http://durbin.senate.gov/showRelease.cfm?releaseId=309944 So what's next? Like any piece of legislation, the Congenital Heart Futures Act has to get majority support in both the House and Senate in order to be passed. Please email your Senators and Congressman today to ask them to become a co-sponsor of this legislation, which is bill S. 621 in the Senate and H.R. 1570 in the House. It just takes a minute - here's how you do it: 1) Go to http://www.senate.gov/ and http://www.house.gov/ to look up your representatives and their email addresses 2) Draft your email. 3) Make your letter personal to you. 4) Send your email. Be sure to include your full mailing address as well as your email address. Don't use US mail, since thanks to the anthrax scare it now takes many weeks for mail to arrive in Congress. Thank you again for your support.

The Congenital Heart Futures Act

It was great to meet with congressional staffers. It turns out that one of Senator Robert's staffers has a brother with a Congenital Heart Defect (CHD). So she was just as passionate about it as we were. Both staffers had said that this issue had never been brought to their attention before.
Our purpose for lobbying was to look for a co-sponsor or support for the Congenital Heart Futures Act. This act is 3 fold. First, there is a need for congenital heart specific research. It is the #1 birth defect in our country and there is currently NO research being done on this disease. Secondly, the bill is intended to promote awareness. Third, to increase surveillance with a national registry. This will hold patient and medical information. In the 1950s only 20% of babies born with CHD survived into adulthood. Now 90% of these babies live into adulthood. As you can see the congenital heart population is growing. The Congenital Heart Futures Act could be beneficial to this population and their families.
This was a successful trip because of the fact that we were able to bring about congenital heart defects awareness.

Thank you for your support.

Please click on the link below to see more pictures.

http://picasaweb.google.com/feekeymarie/CongenitalHeartLobbyingDay#5301989338506051762

Mission Accomplished

I am officially an experienced federal lobbyist. I had an empowering experience today. As some of you may or may not know I am a member of the Adult Congenital Heart Association (ACHD). This association is a part of the Congenital Heart Coalition (CHC), as are The Children Heart Foundation, Mended Little Hearts, It's My Heart, Adult congenital & Pediatric Cardiology and the Congenital Heart Information Network. It was reassuring to see all of us come together for one common interest...to support congenital heart disease.
I am still processing my lobbying experiences. My mission for the day was to inform Congressmen about a bill that will be introduced to the Senate. The Congenital Heart Futures Act is a bill that is in the process of being crafted by CHC and Senator Durbin. This act will 1) increase research 2) promote awareness. This bill will need their support.
Unfortunately, I was not able to personally speak with a congressmen. However I met with Senator Brownbacks' and Roberts' staffers.
I look forward to sharing more very soon.

We are in Washington D.C.

I want to start off by thanking all of you who made this possible. I am very happy to say that the $1000 goal was met. So thank you again.
Devin and I arrived to Washington D.C. We got lucky and got to got to a few memorials. Tomorrow we meet up for a dinner with all of the other CHD (congenital heart defects) people . I'm looking forward to sharing my scars and see others with them.
I will be posting a new blog soon.

Almost There....

I have received much needed support. To date, 57% of the the total funds needed have been received. Thank you to those individuals, families and organizations, especially Congenital Heart Defect Families.
I feel honored to represent the Congenital Heart Community. I have recently started an internship with a Kansas House Representative. I feel confident that I will have a little political experience under my belt before I head off to Capital Hill. I look forward to sharing more with you in February. Our agenda is to ask congresspersons to co-sponsor legislation to fund a national congenital heart registry and to support congenital heart defects research and education.
Thank you again, for supporting me and this community.

Anticipated Expenses for Lobbying in Washinton D.C.

As a member of the adult congenital heart association (ACHA), I have been invited to Washington DC on February 10, 2009 to participate in the National Congenital Heart Lobby Day.

I will attend meetings with my Senator and House of Representative's office to raise awareness of congenital heart disease (CHD) and ask for their support of a national CHD registry and CHD research and education.

I've calculated the anticipated expenses.

Airfare: $350
Hotel: $400
Meals: $100
Subway/Cab Fare: $100
Miscellaneous: $50
TOTAL: $1000

So my financial goal is $1000
To date 52% of the expenses have been pledged.
If you would like to contribute please send donations to the following.

US Bank

c/o Alicia Jones

15380 W 119th St
Olathe, KS 66062

Please be sure to put 6111 on the check.

This is the last 4 digits of the account - the bank needs this info to post your contribution accurately.
It has been suggest to me to have all of the founds together one month prior to the lobbying date.
So, I ask that founds be sent by January 10, 2009, please.

Thank you to everyone for your support!

Taking Off

I've checked with the ACHA to see if there is funding assistance available and because this "day" is not a program there is none. However they have been able to work out a discounted rate for hotel lodging.

Overcoming my congenital heart disease and the experiences that come with it have fueled my desire to lobby and advocate.

I plan to share my experiences while in Washington D.C. via this blog. In the meantime I'll keep you posted with pledges made. I'm using this blog as a means of giving back.

Thank you to each and EVERYONE of you who have pledged so far to make this dream come true. And I look forward to hearing from others who would like show their support.

Anything you post here will be public. Please email me if you would like to communicate privately. feekeymarie@gmail.com

I am sending additional posts showing what funds are needed, along with what funds have been pledged. Directions on where to send the donations will be given at that time.

I'm grateful to share this process with you.
Love and smiles,
Alicia