Who Has Written? Share your letters and responses! :)

Please feel free to share the letters that wrote to your representatives and share responses!

Make sure to e-mail me any official responses. We've gotten 3 co-sponsors so far!!!! WTG everyone!!!!!!!! :)

I wrote but did not hear anything.

Senator John Cornyn of Texas is on board to support the bill when it comes through Congress. I put his letter somewhere and have to find it but when I do I will scan and send to you Dawn.

I have just written letters to my 2 senators and 1 representative for South Dakota. I'll put them in the mail tomorrow. Since I'm new to the board, I didn't know about the bill until recently. Thanks for the important information. Kathy

Thank you Kathy!!! You are not late on the letters at all, for it was just introduced to the committee just recently. Hopefully by election time we will know if it has passed the committee.

That is great Karen!! Hopefully you hear back Karla!!

I remember seeing somewhere a posting about what should be included in the letters. Was that here or Facebook? I want to write mine within the next couple of days.

http://www.cherubs-cdh.org/bills/ is the link to bill site. There you can find two different letter templates with instructions. You can personalize these letters. You will find the bill copy there and a page of info. to include with the letters.

Thank you! I'm going to start mine tonight. =)

Melanie and I have sent letters to all 22 committee members and two state Senators, one of our Senators is on the committee. That's a total of 46 pink, yellow, and blue envelopes headed to D.C.! Now if I can just manage to get that meeting with Senator Hatch's office!

Are we sending the letters to our state offices or the DC location?

You can do both, but many are sending them to the DC offices and calling local offices. Many times, it is just their aides getting most of the mail and answering calls in the local offices. Feel free to email them too with your letter, for some of our members are getting quick responses!

Thanks Tracy....Casey and I were putting a list of addresses together and I used the DC office, then thought maybe I was doing it the lazy way so wanted to be sure I was doing the right thing.

I've sent some via snail mail and some e-mail. So far I have not heard anything back. The min. I do I will mail them right to CHERUBS for you to have on file. I'm also posting this note from Josh. Thank you Josh. I wrote to them and sent e-mails. Here is the info for those of you who would like to write to them as well.





Josh Ogden Spencer Hensley



In addition to my last post, I have a new approach. Let's also send letters to NIH Director Dr. Francis S. Collins asking for his support.

Dr. Francis S. Collins, Director, NIH
9000 Rockville Pike
MSC 0148

Bethesda, Maryland 20892

Or e-mail him:
execsec1@od.nih.gov

And let's also e-mail the COPR, Director's Council of Public Representatives whose mission statement is to bring a public voice to NIH:
copr1@palladianpartners.com

If we put as much effort into contacting these people, maybe we can get them to let the Senate know they support us too!

I sent Letters to both CA Senators and my district Congressman. Working on the letters to the Committee. Haven't received any response back yet. When I do I'll make sure to pass on.

Good Luck everyone!!

Send letters to both State offices and DC Location. Also Call State Office and try to get a meet and greet set up to hand over the bill and letter personally. Lets Get this Bill Passed!!! Good Job everyone, one thing you may not think of..... Get your friends, co-workers, etc to write letters too! They are also a part of your CDH journey, let them write letters explaining the effect CDH had on the person they are close to!! Post the bill in local Supermarkets, Take the Bill to a College near you, ask if you can post on their boards, Take the Bill to Your OB's office, Call your Papers and tell them of this amazing opportunity we have to help CDH kiddos ALL OVER THE WORLD!! WE CAN DO THIS!!

When is the letter deadline??

My daughter (Gavin's mom) is sending her letters this week, too. It is so weird to think that I only learned about CDH 4 weeks ago today when Gavin had his surgery and now I know enough to write to our members of congress. It does feel good to do something concrete, though.

Thank you to all who have written letters. yeah!!! each one helps. This is just a friendly reminder. Here is all the info you need below.

http://www.cdhbills.org/
All letters, the Bill, tracker, info, video and everything related to the CDH Research Bill in one place!

Many, many thanks! Have a great week everyone.

I'm not sure on the deadline date Christina. I thought someone told me Oct. but I have not heard of a firm cut off date. I'll ask around some more.

I got my letters sent out last week. :) I am anxiously awaiting responses.

Some of our Senators have where you can email them too with your letter! Both my Senators had a box to check if I wanted a response. I checked yes, so we shall see what I get back. I would like something more than a canned response.

Not sure on the deadline either...just keep sending them in. The Senators are in recess this month and are back to work in September. I would try to do it before elections take place...some of the senators may be out a job too and new ones in place. We will have to watch for that after elections.

Thank you to all of you writing letters and thank you to all of you meeting with your Senators and/or their aides!!!

Wow! Great work everyone. Keep it up.