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Do Something and Take Action!

In keeping with our mission of Doing Something, we encourage our community members to speak up, act, and advocate for newborn screening for SCID if their countries don’t already participate.

Since 1987, our aim has been to promote hope, advocacy, and action. We are devoted to early and precise diagnosis, meaningful treatments, and ultimately, cures for Primary Immunodeficiency. We are motivated by Jeffrey’s legacy—we could not let his life be in vain—and we aim to motivate our community to follow our efforts to Do Something until every country across the globe is participating in a comprehensive newborn screening program. Newborn screening saves lives—it’s that simple.

If you’re looking to take action and get involved, now is a great time to contact your representatives and let your voice be heard.  We’ve prepared a template letter so that anyone can join our efforts to promote public awareness for newborn screening for SCID. Just copy, paste, and fill in your information to get started.

Together, we can, and we will, save so many more precious lives!

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DATE

REPRESENTATIVE NAME
Address
City, State, Postal Code
 

Dear REPRESENTATIVE (NAME):

I’m reaching out on behalf of the Jeffrey Modell Foundation and the patients they serve worldwide to request that (COUNTRY) add Severe Combined Immune Deficiency (SCID) to the core newborn screening panel without delay.  

SCID, also known as “Bubble Boy Disease,” is a genetic group of disorders characterized by an impaired immune system, causing newborns to develop serious and recurrent infections that typically result in early death within the first year of life. Screening, diagnosis, and ultimately, treatment can cure a baby born with this disease. To date, over 40 million newborns have been screened in the United States alone, and countless lives have been saved as a result of this screening implementation.

I sincerely hope you will put this request at the forefront of your public health agenda and incorporate SCID into the country’s newborn screening program. (COUNTRY) could be a leader in public health by taking this request on and encouraging action.  With (COUNTRY)’s implementation, we can work toward the goal of screening all babies worldwide for SCID.  

Thank you for your consideration.

With hope for the cause,

YOUR NAME

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  • Welcome to our community center, the Internet Café! Get to know JMF by reading Vicki’s blog, follow us on social media, and signup for our newsletter to learn more about our journey to support PI patients worldwide!
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