Jeffrey Modell Foundation (JMF)

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

Family can mean so many things – but for those affected by Primary Immunodeficiency, it often means being a source of strength, support, and care. From caregivers to chosen family, these connections play a vital role in navigating life with PI. Today, on International Day of Families, we celebrate the people who show up, stand by, and make a difference every day. 💜 #InternationalDayOfFamilies #PrimaryImmunodeficiency #PI #Caregivers #FamilySupport #Community

We’re proud to share a publication resulting from the JMF c.h.i.l.d.r.e.n! Research Program grant, “Building Capacity Towards Primary Immunodeficiency Disorders Research, Diagnosis, and Clinical Management in Uganda.” This work reflects meaningful progress in strengthening awareness, education, and diagnostic capacity for Primary Immunodeficiencies (PI) in Uganda. Key milestones to date include: • Integration of a dedicated PI module into the MSc Immunology and Clinical Microbiology curriculum at Makerere University • Early efforts to expand training opportunities for clinicians and trainees in PI detection and laboratory diagnosis, with ongoing pursuit of additional funding to sustain and scale this work. We are excited to see these foundations continue to grow and translate into improved recognition and care for patients living with PI. Read the full publication here: bit.ly/4sYOB46 #PrimaryImmunodeficiency #GlobalHealth #MedicalEducation #Immunology #CapacityBuilding #Uganda #ResearchImpact

Happy #InternationalNursesDay! 🫀 Today, we celebrate incredible nurses like Diemmai, a dedicated pediatric infusion nurse at Texas Children's Hospital. For more than 20 years, Diemmai has cared for patients with Primary Immunodeficiency and their families – helping create a sense of comfort, safety, and “normalcy” during treatment. Inspired by her love for children and shaped by her own experience as a mother, she brings deep empathy to every patient interaction 💙. From small acts of kindness to unforgettable patients like Logan of #TeamSuperman, Diemmai’s work is a powerful reminder of the impact nurses have every day. Thank you for your compassion, strength, and dedication. ✨ Learn more about Diemmai and her work here: bit.ly/4v1BMYj

🎨 Calling the Rare Disease Community: Share Your Story Through Art! This July, SketchNF is opening a powerful rare disease art exhibit at Positive Exposure Gallery – and submissions are now open! This show is more than an exhibit – it’s a space for individuals and families across the rare disease community to be seen, heard, and reflected through art. Whether you’re a patient, caregiver, advocate, or provider, your perspective matters. 🖌️ Submit original artwork + your personal story 🌍 Open to all rare diseases, all ages 📍 Exhibit opens July 7 in NYC ⏳ Submission deadline: June 1st 🔗 If you’re interested, get started here: bit.ly/4mRXpHp Together, we can amplify the voices of those living with rare conditions and build a stronger, more connected community. Please help us spread the word and encourage participation 💙 #RareDisease #RareDiseaseAwareness #PatientVoices #ArtForAdvocacy #HealthcareCommunity #SketchNF #PositiveExposure #JMF

What people with PI wish others knew 💙 We asked our community to share their experiences – and their words say so much about what it’s really like living with Primary Immunodeficiency. From how even a “simple” cold can cause serious disruption, to the reality that treatment is lifelong and not a cure, to the fact that many people look well on the outside while still feeling unwell on the inside – these reflections highlight the complexity and invisibility of PI. Thank you to everyone who shared their voice with us – your stories help build understanding, empathy, and awareness 💙 #InvisibleIllness #LivingWithPI #PIWarrior #RareDisease

May is #MentalHealthAwarenessMonth. Living with Primary Immunodeficiency can come with more than physical challenges - it can bring anxiety, exhaustion, and moments of feeling alone or misunderstood. This month, we’re shining a light on the emotional side of PI. If you’re navigating this, you are not alone, and your mental health matters just as much as your physical health. 🤍 #MHAM

Getting sick once in a while is normal. Getting sick on repeat is not. This article by CSL Behring highlights an important reality: many individuals living with Primary Immunodeficiency (PI) experience recurring infections for years before receiving a diagnosis - often without realizing there may be an underlying cause. Raising awareness of the warning signs and connecting patients to the right resources can make all the difference. Early diagnosis leads to better outcomes and a better quality of life. The Jeffrey Modell Foundation is proud to be recognized as a global resource for patients, families, and healthcare providers navigating PI, helping to ensure no one goes undiagnosed. 🔗 Learn more and explore available resources: bit.ly/417Qxf4 #PrimaryImmunodeficiency #RareDisease #EarlyDiagnosis #PIAwareness #KnowTheWarningSigns #CSL #SickOnRepeat

We are proud to celebrate the dedication of the first-ever Jeffrey Modell Center for Informatics and Data Science at the Virginia Tech Carilion School of Medicine – the first center in our global network focused specifically on informatics and data science, led by Dr. Nicholas Rider. Read more here: bit.ly/4n1MjQb

That “secret superpower”? It’s life-changing. Plasma donations are used to create therapies that people with Primary Immunodeficiency rely on every day — not as a choice, but as a necessity. Not all superheroes wear capes — some just donate plasma 💙 This World PI Week, be someone’s superpower. #INFO4WPIW

We’re so thankful for our incredible #WorldPIWeek sponsors whose ongoing support helps drive our mission forward - creating healthier, more hopeful futures for those living with Primary Immunodeficiency. Because of their partnership, the Jeffrey Modell Foundation is able to expand global awareness and grow impactful programs for the PI community. A sincere thank you for making this work possible. ✨

This #WorldPIWeek, stories like AJ and Maverick’s remind us that no one faces PI alone - and that awareness, connection, and early diagnosis can change lives. AJ and Maverick are two incredible kids living with X-Linked Agammaglobulinemia (#XLA). Through advocacy, community, and even bringing Rare Disease Day into their school, this family is helping others feel seen, supported, and empowered. 💙 Read their full story here: bit.ly/4sPqe8T

Today marks the beginning of World PI Week. All around the world, patients, families, clinicians, and advocates are coming together to shine a light on Primary Immunodeficiency (PI) - and the importance of early diagnosis, access to care, and support. This week, and every week, we remain committed to improving the lives of those living with PI. 💙 #WorldPIWeek #INFO4WPIW #StrongerThanPI #TogetherForPI #WPIW #WPIW2026 #WeCantWait #PrimaryImmunodeficiency

It’s happening.. 👀 #WPIW2026

Join us for an upcoming JMF Speaker Series featuring Dr. Luigi D. Notarangelo, presenting: “Primary Immunodeficiencies: A Continuously Evolving Story.” ✅ Registration is FREE – save your spot here: bit.ly/4medOFH #JMFSpeakerSeries

⭐ Patient Spotlight: Meet Anila!⭐ Anila struggled for 6 years without a diagnosis. After years of seeing specialists and getting tests done, Dr. Liliana Berozdnick diagnosed her with #PrimaryImmunodeficiency. This marked a turning point in her life. She discovered her passion for swimming, became an ambassador for Iniciativa Alas and works to spread awareness across the world. Through her work, she’s been able to share her story with major media outlets in Argentina, helping others to get diagnosed as well. Anila’s story is a reminder of the importance of self-advocacy and resilience in the PI journey. We see you, we hear you, and we support you! 💙 Click here to read her full story bit.ly/3PWZfKY ⭐ Paciente Destacado: ¡Conoce a Anila! ⭐ Anila luchó durante 6 años sin un diagnóstico. Tras años de visitar especialistas y realizarse numerosos estudios, la Dra. Liliana Berozdnick finalmente la diagnosticó con #InmunodeficienciaPrimaria. Ese momento marcó un antes y un después en su vida. Descubrió su pasión por la natación, se convirtió en embajadora de Iniciativa Alas y trabaja para generar conciencia en todo el mundo. Gracias a su labor, ha podido compartir su historia en importantes medios de comunicación de Argentina, ayudando a que otras personas también puedan recibir un diagnóstico. La historia de Anila nos recuerda la importancia de la autodefensa y la resiliencia en el camino de la Inmunodeficiencia Primaria. ¡Te vemos, te escuchamos y te acompañamos! 💙 Haz clic aquí para leer su historia completa. bit.ly/3PWZfKY #PIWarrior #PrimaryImmunodeficiency #IniciativaAlas #PIAdvocacy #JMFGlobal #RareDisease

We’re excited to welcome Dr. Luigi D. Notarangelo for our next JMF Speaker Series as he presents: “Primary Immunodeficiencies: A Continuously Evolving Story.” From groundbreaking research to the future of diagnosis and treatment, this session will explore how the story of PI continues to unfold. Moderated by Dr. Lisa Forbes Satter, this is a conversation you won’t want to miss. ✅ Free registration available now – click here: bit.ly/4medOFH to sign up!

If you’ve been waiting for a sign, this is it.💛 Zoom in and make a lifesaving difference for others. Every donation matters.🩸 #PlasmaDonor #PlasmaDonation #PlasmaSavesLives #JMF

For one day, they aren’t patients. They’re just kids. 💙 At JMF KIDS Days, children living with PI get the chance to laugh a little louder, play a little longer, and simply be. These moments of joy and connection are only possible because of your support. Help us give every child a day they’ll be counting down to all year long. Click here to donate: bit.ly/47KlqtO

🚨 Mark Your Calendar! 🚨 Join us on April 28, 2026 at 9 AM PDT / 12 PM EDT for our next JMF Speaker Series, held in recognition of World Primary Immunodeficiency Week (April 22–29) 💙 We’re honored to welcome Dr. Luigi D. Notarangelo, Chief of the Immune Deficiency Genetics Section at National Institute of Allergy and Infectious Diseases, for a virtual presentation: “Primary Immunodeficiencies: A Continuously Evolving Story” Moderated by Dr. Lisa Forbes Satter, this session will explore the ever-evolving landscape of PI research, diagnosis, and care. ✅ Registration is FREE here: info4pi.org/wjmf/speaker-s… This activity has been planned and implemented in accordance with the accreditation requirements and policies of the Accreditation Council for Continuing Medical Education (ACCME) through the joint providership of The Columbia University Vagelos College of Physicians and Surgeons and the Jeffrey Modell Foundation. #JMFSpeakerSeries #WorldPIWeek #PrimaryImmunodeficiency #Immunology #PICommunity #INFO4WPIW #WPIW #WPIW2026 #WeCantWait

#WorldHealthDay is a reminder that health is one of our most valuable resources. 💛 Today, we recognize the importance of awareness, access to care, and continued progress in improving lives around the world. Together, we can help create a healthier future for all. #JeffreyModellFoundation #HealthForAll #PIAdvocacy