News & History
06/02/10
This was a pic I told of Ray’s last set of hearing aids. This reminds me I should do a similar shot of his current ones.
SCID added to Newborn Screening Panel!
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 […]
Newborn Screening for SCID
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 […]
My public comment to the HRSA ACHDNC on January 21, 2010
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 […]
When does that 180 day time frame end?
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 […]
04/02/10
This is Ray yesterday, texting on his phone from the PACU. We were at NIH. They did a bone marrow aspirate. A number of his counts have been trending down and they are not sure why. They don’t think that it could be the IGF-1 protocol he’s been […]
Another day at NIH
Right now we’re at NIH going through clinics. We were here about 3 weeks ago for Ray’s regular check up for the IGF1 protocol. When we were here last time, they noted from his long term labs that both his platelets and lymphocytes have been declining over the last year […]
01/21/10 Advisory Committee Vote
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 this screening […]