Monday, September 30, 2013

About My Daughter Penny


11/14/2013 UPDATE at bottom of the page!

 As most of you know (or some of you may not) on February 13, 2013 my 18 month-old daughter, Penny, passed away unexpectedly in her sleep. Next week Rachael, Lucy and I are going to Washington DC to lobby the Congress and Senate about the Sudden Unexpected Death Data Enhancement and Awareness Act (S.314/H.R.669) which was introduced with bipartisan support. This Act would fund research and standardize autopsies for for stillbirths, SIDS and SUDC. Right now the way autopsies are performed and data from autopsies are collected in these types of deaths vary from county to county. (Except in the case of SIDS, which is defined as a child 0-12 months.) This would extend the age range of the standardized autopsies and data collection to include stillbirths up to 4 years-old. Penny was 18 months-old and considered SUDC. "Sudden Unexplained Death in Childhood". So I'm asking you for a favor. This time around I don't need you to watch my TV show or buy anything or fund a Kickstarter. It's way easier.

Right now all I need you to do is click on one link and write your Senator or Congressman and ask them to support S.314/H.R.669. That's it.

I'd never called or written an elected official in my life, until a few weeks ago, and in doing so we got meetings with the Health Advisors to Senator Boxer, Senator Feinstein, Congresswoman Pelosi and a personal meeting with Congressman Adam Schiff himself. So believe it or not, writing your representative really does work. I'm not asking you to meet with anyone, just an email to put it on their radar. One email and you're done.

All you have to do is click on the link below and follow the instructions and an email will be sent to your specific Congressman and both Senators from your state. It takes less than a minute. It's super easy and super important to me and my family. If you want to do your own research on this issue before sending anything, I encourage you to do so.

Thanks so much everybody!

Andy Sipes

 https://www.votervoice.net/SIDS/Campaigns/26685/Respond

UPDATE!!!! 11/14/2013
I wanted you all to know that I have been informed that HR669 will be included in a hearing next week of the House Subcommittee on Health.

Details: November 13, 2013
Committee on Energy and Commerce Subcommittee on Health
HEARING NOTICE
 
The Subcommittee on Health will hold a hearing on Wednesday, November 20, 2013, at 2:00 p.m. in 2123 Rayburn House Office Building.  The hearing is entitled “Examining Public Health Legislation to Help Local Communities.”  Witnesses will be announced and are by invitation only.  The hearing webcast will be available athttp://energycommerce.house.gov/.

It has taken more than 4 years to get to this point, so it is reason to celebrate!!!!!   And then (sorry) quickly move into action! :)

TO HELP: If you live or work in any of the states that the following Congressional members represent (listed on bottom of this email)- PLEASE- call their DC office before Nov 20 and ask for their support of HR669 at the hearing and in any negotiations that follow. If you have family/friends in their district- please ask them to call. And if you had meetings with any of the these offices in the past, this would be a good time to followup. You can find their contact info on their website using the formula:lastname.house.gov

If you have any questions, please let me know. The hearings are open to the public and can be viewed online thru the link in the above announcement. Also, I  am confirming that Congressman Pallone has all the org letters of endorsement which will be read into record at the hearing. If anyone knows of any orgs that are thinking of endorsing the bill and are not on the list on our webpage, please instruct them to get me their letters ASAP. http://sudc.org/Advocacy/FederalLegislation.aspx

Thank you!
AGAIN, if you live or work in any of the states that the following Congressional members represent - PLEASE PLEASE PLEASE- call their DC office before Nov 20 and ask for their support of HR669 at the hearing and in any negotiations that follow.


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1 comment:

  1. Dagmar Ebaugh - mama of twoOctober 2, 2013 at 12:57 PM

    So so sorry for your loss! I can't even imagine your sorrow. I clicked on the link and submitted my form. I hope this legislation passes, and that you and your family gain some peace. Best wishes ....

    ReplyDelete

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