Follow the latest information: 

JUNE 2010:

WI Press Release, SCID baby diagnosed and life saved

MAY 2010:

IDF Press Release-Addition of SCID. 

Approval Letter from Secretary Sebelius.

MARCH 2010:

Letter Recommending SCID Be Added To Core Panel.

 JANUARY 2010:

IDF Press Release.

JMF Press Release. 

ARCHIVES:

Evidence Review Letter for SCID.

On May 21, 2010 our prayer was answered! The Secretary of Health and Human Services, Kathleen Sebelius, announced the addition of SCID to the core panel of 29 genetic diseases.  Our next prayer is to have the screening program implemented in all 50 states and the surrounding US territories.  

What is Universal Newborn Screening for SCID and why is it important?

The Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) developed a list of 29 core conditions that all newborns born in the United States be screened for.  SCID is the first condition to be added to this Recommended Uniform Screening Panel since it’s adoption in September of 2005.  When babies are born with SCID they tend to look like any other healthy infant.  That’s why the passing of Newborn Screening for SCID is so important because looking at these babies on the outside you would have no idea that there is something so terribly wrong going on in the inside.  Without early diagnosis and treatment, most often by a bone marrow transplant from a healthy donor,  these babies will die before their 1st birthday.   Please go to the TAKE ACTION page and see how you can help make SCID Newborn Screening Universal.

Click on the map to enlarge the image and see the number of conditions that are screened for in your state.

To see a list of the current conditions that are screened for by each state click here Current Conditions.

We can’t afford to lose anymore BABIES!  Please HELP!

Contact your State Government:  It is now up to each individual state to adopt the necessary testing.  That being said, we need help in all 50 states to make this happen.  Please contact your US Senators and Governors and ask them to support funding for the above bill.  You can find their contact information by clicking on this link: Senators’ Contact Information and Governors’ Contact Information

Contact your State Legislature:  Please contact your state legislature and let them know how important Universal Newborn Screening is and why you would like to see screening for SCID added now in your state.  You can find their contact information by clicking on this link: Legislatures’ Contact Information

Contact your State Newborn Screening Laboratory: This link will show you who the contact person is for your particular state by clicking on this link State Lab Contact Information and selecting the state you live in.  Contact them and offer to help them learn about SCID.  Share a brief story with the regarding your experience with SCID.  We need to help them understand why this is so important. 

The IDF (Immune Deficiency Foundation) is a national patient organization for persons with primary immunodeficiency disease’s, has put together a very useful “SCID Newborn Screening Toolkit” to use as your guide when contacting with these individuals.  I think you will find this information extremely helpful and very informative.  This is our opportunity to educate so please use the materials they have put together for us  Click on the following link and you will find the toolkit near the bottom of the page: IDF NBS Toolkit

In order to find out if there are currently any bills regarding NEWBORN SCREENING in your state click on this link and see: Bills  The first thing you need to do is click on your state.  You’ll see first listed is the state, the bill number is next, followed by a brief description of the bill and the current status of the bill.  So if you see there is a bill in your state regarding newborn screening for SCID, you will certainly want to send a letter to  your representative and see how you can help to get this bill passed. 

Send a letter or email: Download a Sample Letter to Legislator on SCID NBS  Or  Sample Letter to State Health Dept., State Lab, or Newborn Screenig Committe

SCID Conference

July 25th -27th, 2008 the SCID Community hosted an international conference for families who are affected or have been affected by SCID. The conference was held in the beautiful Blue Ridge Mountains of Virginia, at Wintergreen Resort and Spa. This is the first such event where families with ALL forms of SCID were invited to attend. I am happy to say we had over 140 people in attendance, with families coming from as far away as California and New Zealand! The event provided a wonderful opportunity for patients, families, children, physicians and industry to come together and learn more about this devastating disease, and the quality of life issues that go along with successful treatment. The adult educational sessions offered new, up-to-date information from top experts in the field. The children’s programs were packed with fun-filled activities for all ages, which emphasized teamwork, cooperation, and acceptance.

We are hoping to put on another conference in a couple of years so please let us know if you would be interested in receiving information on such an event. You can email me at Heather@SCIDangelsforlife.com

 

Thank you to everyone who sponsored our silent auction and came out and supported this event.  It was a HUGE success for SCID, Angels for Life Foundaton and we look forward to hosting another one in the fall of 2011.

SCID, Angels for Life Foundation is a 501(c)(3) non profit organization and donations are tax deductible to the maximum extent allowed by IRS regulations. Our Federal Tax ID number is 26-2301379. Please consult your tax advisor to determine the tax deductibility of your donation.

*For more information on Wisconsin’s Newborn Screening for SCID pilot program, please contact webmaster@mail.slh.wisc.edu

States that will be implementing SCID Newborn Screening Programs in the near future are: 

Texas- Is beginning a small screening pilot program that will be funded by the CDC

Louisiana- After July 31, 2010

New York – Fall of 2010

How we got to the point where Secretary of Health, Kathleen Sebelius, passed the recommendation to add SCID to the National Newborn Screening Panel (my personal notes):

On Thursday, January 21, 2010 the Advisory Committee on Heritable Disorders in Newborns and Children voted to add SCID to the newborn screening panel and has passed on their recommendation to the Secretary of Health and Human Services, who has the final say.  She has 180 days to decide whether or not to agree with the committees recommendation for approval.  This is HUGE for those of us who have been struggling to get this passed.  Once it’s passed, which we feel it will be, and on the panel, our next goal will be to have it established in each of the 50 states.  Again, this is wonderful news and we look forward to the journey ahead! IDF Press Release

On November 24, 2008 the Advisory Committee on Heritable Disorders in Newborns and Children held their sixteenth meeting.  This meeting was done via WEBCAST and I had the opportunity to speak to the committee during the Public Comments section.  At that time I read our personal story and experience with SCID and shared with the committee why I feel this inheritable disease should be added to the committees recommended uniform newborn screening panel.

The committee did not make a decision during the last meeting and plans to have further discussions along with a vote during their February 26th & 27th meetings in Bethesda, MD.