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

The Jeffrey Modell Foundation was proud to support and attend the recent KRECs Consortium Meeting in Tampa, Florida — bringing together clinicians, researchers, and global experts to advance education and implementation of KRECs in newborn screening. These important conversations and collaborations are critical to improving early diagnosis and outcomes for patients with Primary Immunodeficiency around the world. And of course, Jammer came along for the journey too 💙 #PrimaryImmunodeficiency #NewbornScreening #Immunology #PICommunity #INFO4WPIW

Weekend plans funded by plasma donations. Can’t complain🤷‍♀️ Donating plasma helps patients with Primary Immunodeficiency live healthier lives - and yes, donors are compensated too. A meaningful way to make an impact. 💙 #PlasmaDonor #PrimaryImmunodeficiency #PlasmaDonations #SaveLives

Jeffrey’s story is at the heart of everything we do. His journey inspired a movement dedicated to earlier diagnoses, better treatments, and stronger support for families facing #PrimaryImmunodeficiencies. Through this mission, his legacy continues to bring hope to countless lives. 💙 #PrimaryImmunodeficiency #JeffreyModell #PIWarrior #JeffreysLegacy

In our #PIIdentified series, we explain the different types of Primary Immunodeficiencies, symptoms, diagnoses, and more. 👩‍🏫📖⁠ Schimke immuno-osseous dysplasia (SIOD) is a rare genetic #PrimaryImmunodeficiency that affects the bones, kidneys, and immune system. Caused by changes in the SMARCAL1 gene, SIOD can lead to short stature from spinal abnormalities, kidney disease, low T-cell levels, and increased risk of infections. Swipe through to learn more about #SIOD and stay tuned to learn about more types of PIs 💛⁠

📣Have you registered yet? We are partnering with The Columbia University to offer CME credits! Join us for our upcoming JMF Speaker Series featuring Dr. Donald B. Kohn presenting: “Gene Therapy for Inborn Errors of Immunity: It’s taken us so long ’cause we’ve got so far to come.” Moderated by Dr. Jordan Orange, this important conversation will explore the progress, promise, and future of gene therapy for Inborn Errors of Immunity. ✅ Registration is FREE! Secure your spot here: bit.ly/3Oa2RYW #JMFSpeakerSeries #PrimaryImmunodeficiency #InbornErrorsOfImmunity #GeneTherapy #PICommunity

Donating plasma does more than help save lives – it can benefit you, too. 💛 #PlasmaDonation is a simple way to give back while taking care of yourself. #PlasmaSavesLives

Today is Rare Disease Day. 💜 We stand in solidarity with the millions of individuals and families around the world living with rare diseases - including those affected by #PrimaryImmunodeficiency. At JMF, this day represents more than awareness. It represents action, advocacy, research advancement, and a commitment to improving diagnosis and care for the rare community. We’re proud to continue amplifying voices, sharing lived experiences, and working toward a future where rare diseases are recognized early and treated effectively. To everyone who shared their story through our templates - thank you for making your voice heard. Together, we are rare. Together, we are powerful. #RareDiseaseDay #RareAndHeard #RareDisease #RareDiseaseWeek

This #RareDiseaseWeek, we’re proud to collaborate with BeWell, an adaptive apparel company creating premium clothing designed specifically for individuals living with #ChronicIllness. 💜 Our community can receive 10% off using code JMF, and 10% of every purchase will be donated back to the Jeffrey Modell Foundation to support our mission. Shop #BeWell here: wearebewell.com

Today, our JMF team came together to share what #RareDiseaseDay means to us. 💜 Each of us printed out our prompts, wrote our messages, and reflected on the patients and families living with #PrimaryImmunodeficiency and #RareDiseases around the world. At the Jeffrey Modell Foundation, Rare Disease Day isn’t just a date on the calendar - it’s a reminder of why we do this work every single day: to advocate, to advance research, to raise awareness, and to stand beside our global community. Now it’s your turn. Download a template, write your story, draw your journey, and share your voice. Tag us or send us your photos so we can amplify them. Find the templates here: bit.ly/4awldw6 Together, we are rare. Together, we are powerful. 💜

🧬It’s #RareDiseaseWeek, and we have another another rare #PrimaryImmunodeficiency spotlight for you out of the 550 different defects 🦠 Good’s Syndrome is a rare condition in adults where low immunoglobulins occur alongside a thymoma (tumor on the thymus). This combination can lead to recurrent infections and immune system challenges. 👉 Swipe to learn more about #GoodsSyndrome. #RareDiseaseWeek #PrimaryImmunodeficiency #RareDiseaseSpotlight #Immunology #RareDisease #RareDiseaseDay

🧬It’s #RareDiseaseWeek! We’re back with another rare #PrimaryImmunodeficiency spotlight 🦠Did you know there are 550 defects under the PI umbrella? NEMO Deficiency Syndrome is a rare Primary Immunodeficiency that can cause serious infections, poor vaccine responses, and ectodermal features like sparse hair, abnormal teeth, and lack of sweating. 👉 Swipe to learn more about NEMO. #RareDiseaseWeek #PrimaryImmunodeficiency #RareDiseaseSpotlight #Immunology #RareDisease #NEMO #NEMODeficiency #RareDiseaseDay

Leading up to Rare Disease Day, we’re inviting our global community to share their rare story. 💜 We’ve created downloadable templates that you can print and fill out, draw on, or complete digitally. Print them out, screenshot them, add your voice, and make them your own. Write what makes you rare. Draw your journey. Share what the world should understand about rare disease. You can find the templates here: bit.ly/4awldw6 📸 Post a photo and tag us 📩 Or send it directly to us 🌎 Help us amplify rare voices everywhere Because every story matters. And together, our voices are powerful. 💜🩷💚🩵 #RareDiseaseDay #RareAndHeard #RareDisease

🧬It’s #RareDiseaseWeek! To raise awareness and promote early diagnosis, we are spotlighting different types of rare #PrimaryImmunodeficiencies out of the 550 different defects 🦠 Today’s rare PI spotlight is Activated PI3K Delta Syndrome (APDS), which is a rare genetic #PrimaryImmunodeficiency that affects how immune cells function. Recognizing symptoms early and getting the right diagnosis can change treatment and outcomes. 👉 Swipe to learn more about #APDS. #RareDiseaseWeek #PrimaryImmunodeficiency #RareDiseaseSpotlight #Immunology #RareDisease #ActivatedPI3KDeltaSyndrome #RareDiseaseDay

Primary Immunodeficiencies (PIs) are typically genetic conditions where the immune system doesn’t function properly from birth 🧬. “Immunocompromised” is a broader term that can describe many situations – temporary or acquired. Understanding the difference helps ensure accurate care and awareness 📢. #PrimaryImmunodeficiencies #RareDisease #FactCheck #Immunocompromised

Helping patients with PI and earning extra cash? Yeah… we’re big fans. 💙💸 Tag your favorite plasma donor in the comments 👇 #PlasmaDonation #PlasmaDonor #Immunology #PrimaryImmunodeficiency #PIWarrior

Despite his body struggling beneath the surface, Jeffrey Modell never let #PrimaryImmunodeficiency lead his life. He continued to embrace life with optimism and high spirits. Inspired by his strength, Vicki and Fred carried that same mindset forward, turning a tragedy into action and purpose. Jeffrey remains as a constant reminder to shine our light even in the face of hardships✨ To learn more about Jeffrey and see his sparkle, watch our documentary here: bit.ly/4rf29I1 #PIAwareness #RareDiseaseAwareness

It’s #NationalDonorAppreciationDay! Today and every day, we celebrate donors everywhere, with special gratitude for plasma donors who make life saving therapies possible for people with Primary Immunodeficiency. Your selfless gift gives patients the chance to live fuller, healthier lives- and for that, we are endlessly grateful.💙 Drop a “💙” below if you’re a donor or tag your favorite donor in the comments. #PlasmaDonation #DonorAppreciation #RareDisease #Advocacy

Love looks different when you live with a rare immune disease, but it’s no less powerful. 💙 Share these with your Valentine (or your favorite plasma donor 😉).

🚨 Save the Date! 🚨 Join us for our next JMF Speaker Series featuring Dr. Donald B. Kohn, who will present “Gene Therapy for Inborn Errors of Immunity: It’s taken us so long ’cause we’ve got so far to come” with moderator Dr. Jordan Orange. ✅ Registration is FREE here: bit.ly/3Oa2RYW 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.

College budget feeling tight? Plasma donation = extra cash + lifesaving impact. To learn more about donating, click here: bit.ly/3M82cGR #DonatePlasma #PlasmaDonation #Immunology #DonateToday