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Young parents Fred and Vicki Modell are overjoyed by the arrival of their first child, a perfect baby boy they name Jeffrey. But just months later, it becomes clear that something is wrong. Jeffrey is diagnosed with a rare disease that leaves him frequently sick and perilously susceptible to even the most common cold. He begs his parents to “Do Something” and though they desperately try, Jeffrey ultimately succumbs to his illness at the age of 15.
Out of their devastating loss, Fred and Vicki turn to their enduring love for each other to find the strength to fulfill their promise to Jeffrey and they resolve to ‘do something.’ With just $500 in the bank, the couple sets out in search for answers to what took his life. Guided by Jeffrey’s memory and the hope to help just one child, Fred and Vicki turn pain into purpose and end up touching the lives of parents and children all across the world. Millions of lives have been forever changed because of Fred and Vicki's determination to “Do Something.”
Click here to watch the film or visit dosomethingdoc.com to learn more.
Welcome to JMF’s blog, Vicki’s Voice! We love hearing from people in our community, and our blog provides a meaningful platform for us to communicate and connect. Here on the blog, we share more personal stories about our programs, patient experiences, Foundation milestones, caregiver health, updates from the lab, and more topics to support our global PI community.
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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!
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,