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IDF Volunteers Bring Important Issues to their Home States!

Volunteers Venture out on their own Advocacy Days for IVIG Access!

Holli Jo "HoJo" Bess of Indiana met with staff from Congressman Barron Hill’s office to tell her story and gain support for the Matsui IVIG demonstration project bill. Holli Jo reports that individuals in the meeting were very emotionally affected by her story and that she fully expects the Representative to sign on as a co-sponsor of the bill!

Dana Currie of Maine was so disappointed with her inability to attend the IDF Advocacy Day in April that she decided to seek out appointments with her legislators and have her own Advocacy event!  Dana has appointments to meet with staff of Sen. Snowe and Sen. Collins and with Rep. Michaud to discuss S 701/ HR 2002 and the Matsui bill in her home state. 

These are great ways to bring the message of IVIG access home (literally)!

IDF Volunteers take Action on SCID Campaign!

As many if you are aware, the Department of Health and Human Secretary Kathleen Sebelius announced the addition of Severe Combined Immune Deficiency (SCID)-commonly known as bubble boy disease–to the core panel of disorders for which newborns in the United States are screened! 

 This is wonderful news as early detection of this disease can mean a vast improvement in the quality of life for individuals with SCID.  In fact, without early treatment many will not survive.  

 Some of our volunteers are taking the reins on this issue by working to try to make SCID Newborn Screening the standard practice in their home states. 

 Joanna Tierno has made contact with the New York screening lab and is distributing materials on SCID newborn screenings to physicians’ offices in order to inform physicians about the benefits of screening infants for this disease.  She is also planning to contact her state representatives about the proposed NY legislation that would include SCID among the standard diseases for which newborns are screened. 

 Debbie Kloker is looking into who to contact and the steps needed to take in order to get SCID on the panel of diseases for which newborns are screened in Oklahoma. 

  If you want to learn more about SCID or the SCID Campaign, please check out the IDF website.  http://www.primaryimmune.org/programs/idf-scid-initiative

This is all very admirable and needed work!  Hooray for IDF volunteers!  ~~Cheers and rowdy applause!~~

Please share if you are engaged in any grassroots advocacy of your own with SCID, IVIG Access, or any other PIDD issue!

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A lot of people are working really hard on the SCID issue since the HHS Secretary's announcement about the addition of SCID to the core panel for universal screening! Volunteers are working in Florida, Illinois, Maryland, New York, North Carolina, Oklahoma, Oregon, Rhode Island, Tennessee, Virginia, and West Virginia to make SCID screening the practice in their states! ~~phew!~~ Check out that list! Keep an eye on the SCID Campaign website for updates and information about how you can get a campaign started in your state! http://www.primaryimmune.org/advocacy_center/scid/scid_newborn_screening...