Comments for IDF SCID Newborn Screening http://idfscidnewbornscreening.org The Immune Deficiency Foundation's Blog for Newborn Severe Combined Immunodeficiency Screening Tue, 04 Oct 2011 16:10:05 +0000 hourly 1 http://wordpress.org/?v=3.1 Comment on Three more states start SCID newborn screening programs! by Three more states start SCID newborn screening programs! – IDF SCID Newborn Screening « Rare Metabolic Disorder Awareness (GA1) http://idfscidnewbornscreening.org/2011/10/03/386/comment-page-1/#comment-75 Three more states start SCID newborn screening programs! – IDF SCID Newborn Screening « Rare Metabolic Disorder Awareness (GA1) Tue, 04 Oct 2011 16:10:05 +0000 http://idfscidnewbornscreening.org/?p=386#comment-75 [...] Three more states start SCID newborn screening programs! – IDF SCID Newborn Screening. Rate this: Share this:TwitterFacebookStumbleUponDiggRedditLinkedInEmailPrintLike this:LikeBe the first to like this post. [...] [...] Three more states start SCID newborn screening programs! – IDF SCID Newborn Screening. Rate this: Share this:TwitterFacebookStumbleUponDiggRedditLinkedInEmailPrintLike this:LikeBe the first to like this post. [...]

]]> Comment on A Father’s Story by Pat Penn http://idfscidnewbornscreening.org/2010/07/23/a-fathers-story/comment-page-1/#comment-73 Pat Penn Wed, 28 Sep 2011 02:26:03 +0000 http://idfscidnewbornscreening.org/?p=66#comment-73 Thank you for your statement. It gives us hope. A grandma of a SCID angel Thank you for your statement. It gives us hope.
A grandma of a SCID angel

]]> Comment on A father’s perspective: Editorial on Gov. Rick Scott’s veto of SCID screening by IDF_Emily http://idfscidnewbornscreening.org/2011/07/05/a-fathers-perspective-editorial-on-gov-rick-scotts-veto-of-scid-screening/comment-page-1/#comment-70 IDF_Emily Thu, 25 Aug 2011 13:39:50 +0000 http://idfscidnewbornscreening.org/?p=344#comment-70 Thank you for notifying us, Gina. It seems that because of the age of the article the Tallahassee Democrat has archived the item. You can no longer access it wihout buying a subscription on the website. If anyone discovers another working link to the article, please post. Thanks again! Thank you for notifying us, Gina. It seems that because of the age of the article the Tallahassee Democrat has archived the item. You can no longer access it wihout buying a subscription on the website. If anyone discovers another working link to the article, please post.

Thanks again!

]]> Comment on A father’s perspective: Editorial on Gov. Rick Scott’s veto of SCID screening by Gina Antipov http://idfscidnewbornscreening.org/2011/07/05/a-fathers-perspective-editorial-on-gov-rick-scotts-veto-of-scid-screening/comment-page-1/#comment-69 Gina Antipov Tue, 23 Aug 2011 15:16:45 +0000 http://idfscidnewbornscreening.org/?p=344#comment-69 "Page cannot be found." Please "find" and fix. Thank you! “Page cannot be found.” Please “find” and fix. Thank you!

]]> Comment on Florida Governor Rick Scott vetoes funding for SCID Screening-Take Action! by Richard Santiago http://idfscidnewbornscreening.org/2011/06/02/florida-governor-rick-scott-vetoes-funding-for-scid-screening-take-action/comment-page-1/#comment-67 Richard Santiago Tue, 09 Aug 2011 15:20:54 +0000 http://idfscidnewbornscreening.org/?p=326#comment-67 Not that I want this for anyone, but maybe some or all politicians should have family members with some kind of illness, so that they can see what families go through. funding for important things they will cut, but funding for non related human issues they will fund.... Hello - we need all the help possibly out there - Not that I want this for anyone, but maybe some or all politicians should have family members with some kind of illness, so that they can see what families go through. funding for important things they will cut, but funding for non related human issues they will fund….

Hello – we need all the help possibly out there -

]]> Comment on Michigan takes important step toward SCID Newborn Screening! by Tiffany http://idfscidnewbornscreening.org/2010/10/18/michigan-takes-important-step-toward-scid-newborn-screening/comment-page-1/#comment-65 Tiffany Thu, 04 Aug 2011 01:20:22 +0000 http://idfscidnewbornscreening.org/?p=163#comment-65 Im so happy for Jacob and his family. I wish this could of happened in 2006 when my son was born. He was a healthy baby and happy, but sick all the time. His family doctor had never heard of SCID. Nor had I! I lost my son in Jan. 2007 he was almost 8 months old. I really hope Michigan starts testing all newborns soon. Im so happy for Jacob and his family. I wish this could of happened in 2006 when my son was born. He was a healthy baby and happy, but sick all the time. His family doctor had never heard of SCID. Nor had I! I lost my son in Jan. 2007 he was almost 8 months old. I really hope Michigan starts testing all newborns soon.

]]> Comment on Current Status of SCID Newborn Screening Implementation by IDF_Emily http://idfscidnewbornscreening.org/2011/07/06/current-status-of-scid-newborn-screening-implementation/comment-page-1/#comment-62 IDF_Emily Fri, 08 Jul 2011 13:03:47 +0000 http://idfscidnewbornscreening.org/?p=346#comment-62 Hi Jessica, thank you for your interest in working on SCID screening in your home state! It is so very important that we see SCID screening become a reality in all 50 states. When IDF contacted the Newborn Screening Program in Alabama, we were informed that Alabama is a state that requires FDA approval for the test before they can start screening. With the TREC test that detects SCID, this is not yet the case. Though the test has been recommended by the Secretary of Health and Human Services for screening in all 50 states, there is no FDA approved assay. So the states that move forward with screening have to create their own "homebrew" assay. This is not a problem for many states, but some have policy requirements such that they cannot add a test to their newborn screening panel unless it is first FDA approved. PerkinElmer is currently working to develop an FDA approved assay for the TREC test. That being said, it could still be helpful to check in with the AL Newborn Screening Program and find out if they have made any progress or plan to add SCID once the test is approved. If you are interested in contacting them, please email me at idfscidinitiative@primaryimmune.org Thanks again! Hi Jessica, thank you for your interest in working on SCID screening in your home state! It is so very important that we see SCID screening become a reality in all 50 states. When IDF contacted the Newborn Screening Program in Alabama, we were informed that Alabama is a state that requires FDA approval for the test before they can start screening. With the TREC test that detects SCID, this is not yet the case. Though the test has been recommended by the Secretary of Health and Human Services for screening in all 50 states, there is no FDA approved assay. So the states that move forward with screening have to create their own “homebrew” assay. This is not a problem for many states, but some have policy requirements such that they cannot add a test to their newborn screening panel unless it is first FDA approved. PerkinElmer is currently working to develop an FDA approved assay for the TREC test. That being said, it could still be helpful to check in with the AL Newborn Screening Program and find out if they have made any progress or plan to add SCID once the test is approved. If you are interested in contacting them, please email me at idfscidinitiative@primaryimmune.org Thanks again!

]]> Comment on Current Status of SCID Newborn Screening Implementation by Jessica Taylor http://idfscidnewbornscreening.org/2011/07/06/current-status-of-scid-newborn-screening-implementation/comment-page-1/#comment-61 Jessica Taylor Wed, 06 Jul 2011 21:53:16 +0000 http://idfscidnewbornscreening.org/?p=346#comment-61 Please tell me how and what do I need to do to get this started in Alabama? My boys have CVID and are in process of genetic testing now. Please tell me how and what do I need to do to get this started in Alabama? My boys have CVID and are in process of genetic testing now.

]]> Comment on Current Status of SCID Newborn Screening Implementation by IDF_Emily http://idfscidnewbornscreening.org/2011/07/06/current-status-of-scid-newborn-screening-implementation/comment-page-1/#comment-60 IDF_Emily Wed, 06 Jul 2011 14:03:14 +0000 http://idfscidnewbornscreening.org/?p=346#comment-60 Monica, Thank you for bringing attention to that point. As you can see from other posts on the blog, IDF has initiated a letter writing campaign to educate Governor Scott about the need for SCID screening (http://idfscidnewbornscreening.org/2011/06/02/florida-governor-rick-scott-vetoes-funding-for-scid-screening-take-action/). We are hopeful that with education, we will be able to have SCID screening added as a budget amendment in FL this summer. It is not over in Florida! The IDF community has already sent over 500 letters to the Governor about this important issue. If you would like to participate in the Action Alert, you can go to http://primaryimmune.org/idf-advocacy-center/action-alerts . Thanks again! Monica, Thank you for bringing attention to that point. As you can see from other posts on the blog, IDF has initiated a letter writing campaign to educate Governor Scott about the need for SCID screening (http://idfscidnewbornscreening.org/2011/06/02/florida-governor-rick-scott-vetoes-funding-for-scid-screening-take-action/). We are hopeful that with education, we will be able to have SCID screening added as a budget amendment in FL this summer. It is not over in Florida! The IDF community has already sent over 500 letters to the Governor about this important issue. If you would like to participate in the Action Alert, you can go to http://primaryimmune.org/idf-advocacy-center/action-alerts . Thanks again!

]]> Comment on Current Status of SCID Newborn Screening Implementation by monica bice http://idfscidnewbornscreening.org/2011/07/06/current-status-of-scid-newborn-screening-implementation/comment-page-1/#comment-59 monica bice Wed, 06 Jul 2011 13:51:02 +0000 http://idfscidnewbornscreening.org/?p=346#comment-59 Florida Legislature passed a measure to include SCID in the newborn screening panel. However, our Governor Rick Scott vetoed the measure, calling it too costly. Florida Legislature passed a measure to include SCID in the newborn screening panel. However, our Governor Rick Scott vetoed the measure, calling it too costly.

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