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Primary Immune Deficiency Disease has been represented with a blue ribbon for many years. When the Immune Deficiency Foundation held its first Patient and Family Conference in 2003, many of the SCID families who had met online and shared each other’s losses and triumphs for many years would meet face-to-face for the first time. As [...]  I created a Twibbon! I know you’re wondering, “What’s a Twibbon?” Well, a Twibbon is a little tag or sticker that you can put onto your profile picture on Facebook or Twitter. So, what kind of “Twibbon” did I create? A SCID Newborn Screening Twibbon, of course. Now you can show that you support the [...] OK, do I have your attention? On Friday, May 21st, 2010, Secretary Sebelius approved the recommendation to add SCID newborn screening to the universal core panel. So, where you’ve always heard about the 29 core diseases that HRSA and March of Dimes recommends, there will now be 30 recommended diseases and SCID is number 30! [...] The Time is Now
This is the cover story for the IDF Advocate for Spring 2010. It includes quotes from Carol Ann, Heather, and me. There are also pictures of ^Liam Barrett^, Taylor Dahley, David Singh, and Ray. The IDF Advocate is available in PDF format from the Immune Deficiency Foundation’s website. Click on [...]
I’m really late in posting this, but I never actually typed it up until today. The HRSA Advisory Committee on Heritable Disorders in Newborns and Children met again on January 21, 2010. I presented public once again and spoke after Stacey Barrett, who told the committee that her son Liam “was born in the [...] On January 21st, when the ACHDNC recommended to Secretary Sebelius that SCID newborn screening be added to the core panel of diseases which are recommended for all states, a clock began ticking. She has, by law, 180 days to either recommend SCID newborn screening or send it back to the committee. I was recently wondering [...]  I recorded this video for the Immune Deficiency Foundation to help promote universal newborn screening for SCID.
I tried watching this with the YouTube captions turned on and they are very inaccurate. I hope they get their voice recognition software working better [...]
Today, 1/21/10 the Advisory Committee on Heritable Diseases in Newborns and Children voted to recommend that Universal Newborn Screening for SCID be recommended to Secretary Kathleen Sebelius. She has 180 days to approve or disapprove. If approved then the lobbying will begin to get every state to include [...]  Oh yea, it was in my Public Comment to the HRSA advisory committee.
AAAAI: Rotavirus Vaccine May Cause Infections in SCID Kids By John Gever, Senior Editor, MedPage Today Published: March 18, 2009 Reviewed by Dori F. Zaleznik, MD; Associate Clinical Professor of Medicine, Harvard Medical School, Boston. [...] |
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They said what?
“And of the ones Grandie grew in the garden just so they'd have some to cut. ”
“Beautiful !! Irises always make me think of Grandma's yard. ”
“Very funny! ”
“Deer and antelope?? ”
“Stephan named December 23rd "Christmas Adam" Think about it. ”