Jeffrey Modell Foundation (JMF)

JMF is a global nonprofit dedicated to #PrimaryImmunodeficiency Advocacy, Research, Education, Newborn Screening & Genetic Sequencing to #CurePI worldwide 🌎

[Jeffrey Modell Foundation (JMF) @Info4PI]

Kids get sick 🤒 But how often is too often? Primary Immunodeficiency (PI) causes frequent #infections that can be hard to cure. 1:500 people are affected by PI. If your child exhibits 2+ of the #10WarningSigns 🚨, speak to a physician. See the signs at https://t.co/eRGIvr4Bdh

[Jeffrey Modell Foundation (JMF) @Info4PI]

Eleven ear infections. Four rounds of pneumonia. Years of antibiotics that never quite worked. 💙

For many people living with #PrimaryImmunodeficiency, the signs were there long before anyone connected them.

PI is a group of more than 550 genetic disorders of the immune system, and because it's invisible, families often spend years searching for a diagnosis.

Knowing the warning signs is how that changes.

Learn the 10 Warning Signs of PI at the #linkinbio

#10WarningSigns #PrimaryImmunodeficiency #EarlyDiagnosis #PIAwareness #RareDisease

[Jeffrey Modell Foundation (JMF) @Info4PI]

For most people, washing your hands is a habit. For someone living with #PrimaryImmunodeficiency, it's a layer of protection. 💙

When your immune system can't fight infections the way it should, small everyday precautions carry a lot more weight.

Same twenty seconds. Very different stakes.

#GlobalHandwashingDay #PrimaryImmunodeficiency #PIAwareness #InfectionPrevention #RareDisease

[Jeffrey Modell Foundation (JMF) @Info4PI]

Blood donation and plasma donation are not the same thing, and the difference matters more than you'd think. 💛 For people living with #PrimaryImmunodeficiency, plasma isn't a backup supply. It's the raw material for the medicine that keeps them well. It takes about 130 plasma donations a year to support one person's PI treatment.

[Jeffrey Modell Foundation (JMF) @Info4PI]

What do patients and families living with #PrimaryImmunodeficiency want you to know? 💙

Join us for a special JMF Speaker Series conversation, moderated by Dr. Sarah Henrickson of Children’s Hospital of Philadelphia, featuring members of our Patient & Family Advisory Board (PFAB).

This conversation brings together patients and family members to share their lived experiences with PI, amplify their voices, and help build greater understanding of what it means to live with primary immunodeficiency.

🗓️ October 26, 2026

⏰ 12:00 PM EDT

💻 Live Webinar

Come listen, learn, and hear directly from the people at the heart of the PI community. ❤️

Register here: https://t.co/bkenkZTwaE

[Jeffrey Modell Foundation (JMF) @Info4PI]

September was Newborn Screening Awareness Month. 💙

Throughout the month, parents shared what early screening has meant for their families. Some told us it gave them answers within months instead of years. Others told us it opened the door to a diagnosis they were still searching for.

Every one of those stories is a reminder of why this work matters.

Thank you to every family who trusted us with your story, and to everyone who helped spread the message: every baby deserves the chance to be screened. 💙

#ScreenEveryBaby #NewbornScreening #NBSMonth #PrimaryImmunodeficiency #EarlyDiagnosis #SCID

[Jeffrey Modell Foundation (JMF) @Info4PI]

During International Plasma Awareness Week, we’re taking a moment to recognize the companies that develop and provide the treatments that help protect and support people living with #PrimaryImmunodeficiency. 💛

These therapies can be an essential part of care for many people with PI, and they wouldn’t be possible without the continued work of the scientists, researchers, manufacturers, and healthcare professionals who help bring them to patients.

Today, we’re saying thank you to the companies working to advance treatment options and help people with PI live healthier, fuller lives. Together, we’re stronger than PI.

[Jeffrey Modell Foundation (JMF) @Info4PI]

💙 Today is APDS Awareness Day 💙

Activated PI3K Delta Syndrome (#APDS) is a rare Primary Immunodeficiency caused by changes in the PIK3CD or PIK3R1 genes. It affects roughly 1 to 2 people per million, and because its symptoms can look like more common conditions, many families spend years searching for answers.

People living with APDS may experience recurrent infections, swollen lymph nodes, an enlarged spleen, chronic inflammation, and autoimmune symptoms.

The median time to an APDS diagnosis is 7 years. Seven years of appointments, of infections, of not knowing why.

APDS can be confirmed through genetic testing, and because it can be inherited, testing may also be recommended for at-risk family members.

Earlier diagnosis means earlier care. That's why awareness matters. 💙

#APDSAwarenessDay #APDS #PrimaryImmunodeficiency #RareDisease #EarlyDiagnosis #GeneticTesting #PIAwareness

[Jeffrey Modell Foundation (JMF) @Info4PI]

Today, we’re celebrating Jeffrey. 💙

A little boy whose life was far too short, but whose story changed the lives of countless others around the world.

Because of Jeffrey, families have greater awareness of primary immunodeficiency. Because of Jeffrey, babies around the world have the opportunity to be identified through newborn screening before they become seriously ill. And because of Jeffrey, children and families facing primary immunodeficiency have a community that continues to advocate for them.

His legacy lives on in every diagnosis made earlier, every family given answers, and every child given a chance.

Happy Birthday, Jeffrey. Your story continues to make a difference every single day. 💙

#ScreenEveryBaby

[Jeffrey Modell Foundation (JMF) @Info4PI]

Today, 41 countries have some form of #SCID newborn screening - 28 with nationwide population screening, 8 with pilot programs, and 5 with selective screening.

These numbers represent meaningful progress, but they also remind us that access to SCID newborn screening is still not universal.

This #NewbornScreening Awareness Month, we’re celebrating the progress that has been made while continuing to advocate for what comes next:

SCID newborn screening for every baby, everywhere. 💙

Screen every baby.

*Data shown reflects information available through the Jeffrey Modell Foundation.

#ScreenEveryBaby #PrimaryImmunodeficiency #NewbornScreeningAwarenessMonth #NBSMonth #RareDisease #EarlyDiagnosis #GlobalHealth

[Jeffrey Modell Foundation (JMF) @Info4PI]

Did you know #NewbornScreening for #SCID can also identify babies who may have low T-cell levels associated with other conditions? Early detection can help connect babies and families with the specialists and care they need as soon as possible. Learn more about newborn screening for SCID and #PrimaryImmunodeficiency here: https://t.co/PzjPhuTG1q

[Jeffrey Modell Foundation (JMF) @Info4PI]

Access to #NewbornScreening for SCID is not yet universal around the world. This month, let’s continue to raise awareness, champion early diagnosis, and advocate for #SCID newborn screening for every baby, everywhere. #ScreenEveryBaby. Save lives. Change futures.

[Jeffrey Modell Foundation (JMF) @Info4PI]

Today, we celebrate Fred and Vicki Modell -not only on their anniversary, but for the extraordinary legacy they've built together. Because of their vision, countless children are now diagnosed before symptoms appear, giving them the opportunity to receive life-saving treatment and the chance to live healthy, full lives. Happy Anniversary, Fred and Vicki. Thank you for turning love into hope, and hope into a legacy that continues to save lives. 💙

[Jeffrey Modell Foundation (JMF) @Info4PI]

💙 September is Newborn Screening Awareness Month. For decades, our founders, Vicki and Fred Modell, tirelessly advocated in Washington D.C. for the addition of Severe Combined Immunodeficiency (#SCID) to the federal #NewbornScreening panel. From testifying before Congress to meeting with policymakers, they never stopped pushing to ensure that every baby had the chance for early diagnosis and life-saving treatment.

In 2018, their vision became reality - SCID screening was implemented in all 50 states, Washington D.C., Puerto Rico, and the Navajo Nation. Since then, nearly 42 million newborns in the U.S. have been screened! ❤️ #ScreenEveryBaby

[Jeffrey Modell Foundation (JMF) @Info4PI]

Reply with yours - you never know who might need to hear it.

[Jeffrey Modell Foundation (JMF) @Info4PI]

What is #IgG? It's the most common type of antibody found in your blood and helps people living with PI as they don't make enough IgG or the IgG they make doesn't work properly. Every plasma donation has the potential to help patients who rely on IgG replacement therapy.

[Jeffrey Modell Foundation (JMF) @Info4PI]

Did you know there are more than 550 identified Primary Immunodeficiencies? 🤯 And researchers continue to discover more. Awareness leads to earlier diagnosis, and earlier diagnosis can save lives. 💙

[Jeffrey Modell Foundation (JMF) @Info4PI]

Life is made up of moments worth showing up for. For many people living with #PrimaryImmunodeficiency, plasma-derived therapies help make more of these moments possible.🩸 Your plasma donation could help. #DonatePlasma

[Jeffrey Modell Foundation (JMF) @Info4PI]

It’s #NationalScienceWeek! At the Jeffrey Modell Foundation, science isn’t just part of what we do - it’s at the heart of everything we do. This National Science Week, we celebrate the physicians, researchers, and innovators whose dedication is helping make earlier diagnoses, better treatments, and brighter futures possible. Together, we're turning discovery into hope.

[Jeffrey Modell Foundation (JMF) @Info4PI]

As a new school year begins, every child deserves to feel safe, supported, and understood. To all the educators making a difference, thank you for helping students with PI feel seen, supported, and empowered. 🍎 #BackToSchool

[Jeffrey Modell Foundation (JMF) @Info4PI]

Every plasma donation starts a journey. Each step connects one person’s generosity to another person’s hope. For people living with #PrimaryImmunodeficiency, plasma-derived therapies can be an essential part of staying healthy and living life to the fullest. 💙 Thank you to every plasma donor who helps make this journey possible.