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April 2010

April is Primary Immunodeficiency Awareness Month

IDF volunteers from across the country contacted their Governors’ offices to get State Proclamations declaring April to be Primary Immunodeficiency Awareness Month. Thank you to the following IDF Volunteers! (Click on the underlined names/states to view the proclamations)

Carol King – Arkansas
Steve Fietek – Arizona
Judy Kozulak – Delaware
Amy Walsh – Illinois
Kimberly Buck – Louisiana
Dana Currie – Maine
Dave Hanus – Nebraska
Bill Hindin – New York
Karen Rubin-Jablow – Ohio
Cathy Palmer – Oklahoma
Ken Bass – Oregon
Diane Buckberg – Tennessee
Sami Jankins – Wisconsin

We are anxiously waiting to hear from more states to add to this list!

Advocacy Channel
The IDF Advocacy Channel has a new story! Barbara Ballard from Virginia talks about the importance of Newborn Screening for SCID. CLICK HERE to watch the video on the IDF Advocacy Channel.

Does anyone have a story they would like to share through IDF’s Advocacy Channel? Please email us at advocacy@primaryimmune.org and tell us about it!

State Efforts
IDF Volunteers work tirelessly to create change in their home states. Jenny Gardner had the opportunity to meet with Marco Rubio, candidate for U.S. Senate in Florida, to discuss the special needs of the PIDD community…Kimberly Buck attended a luncheon hosted by Louisiana Governor Jindal in recognition of state proclamations, including the one announcing April as PIDD Awareness Month in Louisiana…and Susan Giorgi-Branch met with the Rhode Island Newborn Screening Board to plead the case for newborn screening for SCIG.

If you have met with your state legislators, Members of Congress or other policy makers or their staff, please let us know! You can email us at advocacy@primaryimmune.org!

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Comments

Received Georgia's today in the mail from Governor Perdue's office. Working on getting it scanned and a copy to the IDF. Got to share about the IDF and Think Zebra with a new ENT in town the other day at the hospital. He has worked up two patients in the last week for CVID. He very much wanted the IDF website address.

Congratulations on your work in Georgia. I would love to make that happen in Florida. The only way to get it done is to keep going back and eventually you hope to get the answer we are looking for. Keep up the good work. Jenny Gardner - Florida

Great job IDF!