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 bit.ly/3wzDmnm

🔬 Happy International STEM Day! 💙 Science and technology play an important role in advancing the diagnosis, treatment, and understanding of #PrimaryImmunodeficiency (PI). From #GeneticSequencing through Jeffrey’s Insights to data-driven tools that help identify undiagnosed patients, scientific innovation helps move us closer to our goal of earlier diagnosis and better outcomes for people living with PI. #InternationalSTEMDay #STEMDay #PIAwareness

🤝 Connecting with the global PI community! Earlier this month, members of the Jeffrey Modell Foundation team attended #ESID in the Netherlands, connecting with physicians and colleagues from around the world who share our commitment to advancing the diagnosis, treatment, and understanding of #PrimaryImmunodeficiency (PI). It was wonderful to reconnect with colleagues & physicians, meet with our WinMD Grant recipients, and celebrate the important work being done to advance PI research and care. 💜 We’re grateful for these connections and the continued collaboration that brings us closer to earlier diagnosis and better outcomes for patients and families worldwide. #ESID2026 #PIAwareness #PICommunity #IEI

🎃 Happy Halloween from all of us at the Jeffrey Modell Foundation! 🎃 Whether you're dressed as a ghost, a superhero, or something wonderfully weird, we hope tonight is full of fun and treats! 👻 Before you head out, a few quick reminders: 🔦 Add reflective tape or carry a light so you're easy to spot 🍫 Have a grown-up check treats before anyone digs in 👫 Stick with your group and use crosswalks 💙 Wash those hands after all that candy-grabbing, and keep looking after your health year-round Wishing you a night that's more treat than trick! 🍬🦇 #HappyHalloween #StaySafe #TrickOrTreat #JeffreyModell

💜 November is National Family Caregivers Month 💜 Behind so many people living with #PrimaryImmunodeficiency (PI) is a caregiver offering love, support, and understanding along the way. From parents and partners to siblings and friends, caregivers play an important role in navigating appointments, managing care, finding answers, and celebrating milestones. Every caregiving journey looks different, but each is an important part of the PI community In November, we want to celebrate the people who show up for their loved ones. 💜 We invite you to share a photo and a few words about being a caregiver and what it means to you. Your story may be featured on our page as we recognize and celebrate caregivers throughout November. 🔗 Share your story here: forms.gle/UHydEbY4mYuNzL5Z7 To all the caregivers in our PI community, thank you for the care, love, and support you give every day. We’re grateful you’re part of our community. 💜 #NationalFamilyCaregiversMonth #FamilyCaregiversMonth #NFCM #RareDisease

Missing school isn't skipping. 💙 For kids living with #PrimaryImmunodeficiency, staying home is often about protecting their health, not missing out. A mask isn't dramatic. Sitting out an activity isn't antisocial. Some days, the risk is simply too high. What helps: flexible attendance policies, make-up work options, a health plan made with their care team, and teachers and classmates who understand why. A little understanding and flexibility goes a long way in helping kids feel supported, included, and understood. 💙 #PrimaryImmunodeficiency #PIAwareness #BullyingPreventionMonth #RareDisease #BackToSchool

What do patients and families living with #PrimaryImmunodeficiency want you to know? 💙 Join us for a special JMF Speaker Series conversation featuring members of our Patient & Family Advisory Board (PFAB), moderated by Dr. Sarah Henrickson of Children's Hospital of Philadelphia. Before a PI diagnosis, many patients spend years being treated for their symptoms rather than the root cause. This conversation brings together patients and family members to share their diagnostic journeys, the emotional impact of living with PI, and how healthcare professionals can better recognize the warning signs. 🗓️ 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: bit.ly/PFABSpeakerSeries #JMFSpeakerSeries #PFAB #PrimaryImmunodeficiency #PIAwareness

📣 Jeffrey’s Insights has been officially published! We’re proud to share that our manuscript, “Jeffrey’s Insights: Next-generation sequencing for primary immunodeficiency diagnosis, 2019–2025,” has been published in the Journal of Human Immunity. 🔗 Read the full publication: bit.ly/4zNYDZM

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

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

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.

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: bit.ly/PFABSpeakerSeries

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

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.

💙 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

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

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

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: bit.ly/3I8AU0V

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.

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. 💙

💙 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