We don’t yet know when NIH will be ready to start the next step for Gene Therapy for Ray. We hope to hear a plan soon. The waiting is hard. We have trouble deciding what we can plan to do and what we cannot. I know Ray is really anxious […]
We are in the process of getting Ray ready to participate in this trial. Even though it will require that Ray receive bulsulfan (a drug often used in cancer treatments). We feel that the XSCID Gene Therapy protocol is the going to be the best way to improve not only […]
IDF produced this video in order to help families understand why isolation of SCID infants is so important through their treatment. It also shows that isolation is not forever and that there is hope for these children to go on to lead happy and healthy lives. Newborn screening is making […]
This video is the Fox5 story on Timmy (and older brother Josh). This shows the day Timmy was allowed to leave NIH. This is the follow up story on their family.
From the IDF’s SCID Newborn Screening Blog On October 4, Virginia’s Genetics Advisory Committee met to discuss the proposed addition of SCID to the state’s newborn screening panel. IDF Board of Trustees member Barb Ballard presented on the current status of implementation throughout the country. Dr. Anne Comeau from Massachusetts’ […]
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 […]
Things we do This is Ray’s IV pump and TPN. TPN is IV nutrition. He usually gets TPN once a week to supplement his enteral (g-tube) feeds.
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 […]
Originally written for the IDF SCID Newborn Screening Blog My son Ray was born with XSCID, but since there was no family history of the disease, he was not diagnosed until he was so sick with pneumonia that he was on a ventilator. He has permanent organ damage because of […]
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 […]
