How Newborn Screening Saved Etta’s Life
On September 5, 2024, Etta was born in New York, the youngest of three sisters in a military family. Her parents had no family history of immune disorders, and like so m...
Patient Spotlights
Stories and experiences from patients living with Primary Immunodeficiency
Patient Highlight - Jakob
Jakob is an active-duty U.S. Navy sailor and was recently diagnosed with Common Variable Immunodeficiency (CVID). After recurring infections turned into serious complica...
Patient Highlight - Sara
After 17 years of uncertainty, Sara was diagnosed with CVID/SPAD. Since then, she’s turned her diagnosis into a mission to raise awareness, create connection, and give o...
Patient Highlight – Kathryn
After 12 years of unanswered questions, countless infections, and worsening lung function, Kathryn finally found clarity with a diagnosis of Common Variable Immune Defic...
Patient Highlight - Evangelia
Meet Evangelia, who was diagnosed with Common Variable Immunodeficiency (CVID) after her mom’s test results led to a deeper family investigation. Despite challenges, Eva...
What People Ask Me About Primary Immunodeficiency (PI)
Text by Jodi Taub, LCSW, PLLC – Patient and Expert in Primary ImmunodeficiencyAs we celebrate World Primary Immunodeficiency We...
Patient Highlight - Lydia
Lydia is vibrant 10-year-old whose life was completely transformed after being diagnosed with Common Variable Immunodeficiency in early 202...
Patient Highlight - Christina
Christina's journey with Common Variable Immunodeficiency (CVID) led her from patient to lifesaving nurse. Her story is a powerful reminder that while PI may change the...
Patient Highlight – Kerry
Meet Kerry! After years of being chronically sick, Kerry’s rheumatologist noticed something wasn’t right. That...
Patient Highlight - Christian
Every day is a victory for Christian, who was diagnosed with XLA at age 3. Christian is now 6, and embraces life with resilience and hope! H...
Patient Highlight - Murilo
Meet Murilo, a passionate advocate living with Common Variable Immunodeficiency (CVID). Murilo was diagnosed in August 2023 after battling recurrent infections and has f...
Patient Highlight - Andy
We are thrilled to share our newest patient spotlight story, featuring Andy! Andy was born in Mexico City with ...
Patient Highlight - Sam
This month's patient highlight features Sam, who was diagnosed with Common Variable Immunodeficiency (CVID) two years after her father passed away. Now, Sam manages her ...
Patient Spotlight - Dawson
Meet Dawson, the FIRST newborn in the United States to be diagnosed with Severe Co...
Patient Highlight - Aubrey
This month’s patient highlight features Aubrey, a college student living with CVID. After being diagnosed at age 19 due to extreme sickness during ...
Patient Highlight - AJ & Maverick
We are delighted to share our newest patient highlight featuring brothers Maverick and AJ! Both boys were diagnosed with XLA soon after they were born, and now receive w...
Patient Highlight - Nicole
We're delighted to share our newest patient spotlight with Nicole! Nicole was diagnosed with CVID in her late thirties, and has since used her ...
Spotlight on Jodi – Mental Health Awareness Month
We are thrilled to share our new spotlight interview in honor of Mental Health Awareness Month. Jodi is a CVID patient and therapist who has dedicated her work to helping others with PI manage thei...
LASID Attendee Interview - Lorenzo Erra
We are thrilled to share an interview with our WINMD recipient, Lorenzo Erra, a doctoral scholar at the Universidad de Buenos Aires in Argentina. Read on to learn more a...
Patient Spotlight: Audrey
We're thrilled to share our new patient spotlight interview with Audrey and her mother Alyssa! Audrey is 10 years old and was diagnosed with Hypogammaglobulinemia after being sick all too often whe...
Patient Spotlight- Wendy
We are delighted to share our most recent patient spotlight with Wendy, who lives with CVID and is a professional handcyclist and coach! Wendy was one of the first PI patients to start receivi...
National Patient Recognition Week
In honor of National Patient Recognition Week, we’re delighted to share our next patient spotlight ...
Patient Spotlight - Helen
We’re pleased to share our next patient spotlight interview with Helen, who was diagnosed with CVID...
Patient Spotlight- Amy
We are delighted to share our newest patient Q&A with Amy, a Primary Immunodeficiency warrior. ...
What Do You Want to Be When You Grow Up?
Earlier this month we introduced our new When I Grow Up character who wants to be a director, and we also welcomed back our Teacher and Dancer who ARE growing up. Thanks to the 10 Warning Si...
"When I Grow Up Q&A" – Mitchell Stuart, HQ Creative
As we continue celebrating the launch of our new PSA campaign, we are delighted to share our recent interview with our colleague and friend, Mitchell Stuart, Co-Founder of HQ Creative. We spoke wit...
Celebrating Jeffrey Modell
Today, we are honored to celebrate our beloved son, Jeffrey Modell, on his birthday. As we look back, it was Jeffrey who created the passion for our work. His determination and courage were inspiri...
Charlie's Newborn Screening Story
We're halfway through Newborn Screening Awareness month! Today, we're delighted to share Charlie's newborn screening story through an interview with his mother, Jennifer. C...
The Importance of Friendship
One of our main goals when we started the Foundation was to encourage a network so that people living with PI would have a built-in community of friends. Our friends support us in good and bad time...
Give the Give of Life: Plasma!
For people living with a PI, plasma may be the difference between life and death. Donated plasma from healthy donors is used to create lifesaving treatments for people living with PI to help their ...
Quebec Adds SCID to Newborn Screening Panel
We are thrilled to share that Quebec has added SCID to its newborn screening panel, joining nine other provinces in their screening efforts to save more lives. Read the announcement
Respecting Invisible Illnesses
“But you don’t LOOK sick…"How many times have you or your loved one heard this statement? Primary Immunodeficiencies are known as invisible illnesses, which means patients may experience com...
The Importance of Family History
The tenth warning sign of Primary Immunodeficiency is…family history. Primary Immunodeficiencies are genetic, which means they run in the family and may increase the risk of inhe...
All About Plasma
For some people living with PI, plasma may be the difference between life and death. But what exactly is plasma, and how does it help to save lives?Plasma contains antibodies, water, salts, ...
WPIW – All About World Immunodeficiency Network (WIN)
As we continue to celebrate WPIW and honor the patients, families, physicians, nurses, and so many other members of our community worldwide, we are delighted to feature our World Immunodeficiency N...
¿Qué es la Inmunodeficiencia Primaria (IDP)?
Pensamos que sería útil compartir un repaso para los nuevos visitantes y seguidores que quizás no sepan qué es la inmunodeficiencia primaria (IDP).
Spotlight – Jennifer and Charlie Randle
As we continue our WPIW awareness work this week, we are delighted to share our recent interview with Jennifer Randle, a mother of two who lives with her family in the United Kingdom. Jennifer's yo...
Watch Our Film, “Do Something: The Jeffrey Modell Story”
In 2017, we were approached by an award-winning film team who asked if we would share the story of Jeffrey and the Foundation. We were honored and proud to share the extraordinary strength of our s...
Spotlight On – Austin Stack
Today we are delighted to share our recent spotlight interview with Austin Stack. Austin was diagnosed with X-Linked Agammaglobulinemia (XLA) at the age of three, and is ...
Donate Plasma to Save a Life
Did you know that plasma can’t be made in a lab? Donated plasma from healthy donors is used to create lifesaving treatments for people living with PI to help their immune systems stay healthy and s...
New Year's Wishes - Do Something More
Happy New Year from all of us at the Jeffrey Modell Foundation! This year, our New Year's resolution is to Do Something MORE.As we embark on our 36th year of operation, we look forward to co...
Program Highlight - Jeffrey Modell Centers Network
Over twenty years ago, we established the Jeffrey Modell Centers Network (JMCN) to meet the rising need for referrals and specialized centers for patients identified with Primary Immunodeficiency w...
KIDS Day Program
When we started the Foundation in 1987, one of our priorities was to make sure that no other child living with Primary Immunodeficiency would have to be alone. We created Kids with...
Grateful for Our Community
On this Thanksgiving eve, I want to take a moment to extend a heartfelt thanks to you, our global PI community. You inspire us, motivate us, and encourage us to Do Something and Do Someth...
ESID Attendee Interview - Dr. Maria Pilar Tejada
Today we’re sharing the next installment of our interview series about attendee experiences at global immunology meetings. We are honored to provide grants to support travel to essential immunology...
Bornheimer Newborn Screening Q&A
In 2007, we agreed to fund half of a pilot program to screen for SCID in the state of Wisconsin. Dawson Bornheimer was the state’s first infant to test positive for a severe T cell deficiency throu...
National Sons and Daughter’s Day – Jeffrey’s Legacy
Jeffrey came into our lives very wanted and very cherished. His first ten months of life were peaceful and happy. He was a beautiful baby! But just before his first birthday, Jeffrey was diagnosed ...
Guest Post: Spotlight on James Rukin
Today we are delighted to share our recent spotlight interview with James Rukin. James was diagnosed with XLA as a young child and is now a thriving 14-year-old. James is a wonderful role model for...
The Importance of Access to Care
When Jeffrey was young, we travelled all over the world to get answers and meet with the most innovative and well-regarded physicians of the time. We were able to provide him with the best possible...
"Roots & Wings" - Pierina Maldonado
July 2022 – One of the most fulfilling parts of our work at the Foundation is supporting patients and their families through our “Roots & Wings” program. Over the past several ...
Get to Know JMF - Yolanda
Today, we’re excited to introduce our community to Yolanda, our fabulous receptionist, in our “Get to Know JMF” series:Why did you decide to work at JMF?I was very excit...
Our Global Reach - JMF Around the World
We couldn’t let Jeffrey’s life be in vain; we knew we had to Do Something in celebration of his life, to give life. In the spirit of his optimism and courage, we created the...
"Roots & Wings" - Elexandro Cordova
June 2022 – Our “Roots & Wings” program continues to take flight! By providing travel and support to families whose child has been identified with a potentially life-threatenin...
Inspired by Jeffrey – International Children’s Day 2022
Jeffrey never knew how he would change our lives and the lives of so many thousands of children he would never meet, forever.We used to ask ourselves, would there ever be research that would...
Get to Know JMF - Roger
We are thrilled to begin a new monthly series on the blog, "Get to Know JMF." Each month, we'll share a Q&A with one of our wonderful staff members so that you, our community, can get to know u...
All About Plasma – “Do Something!” and Donate!
As Jeffrey began to experience the recurring infections typical of Primary Immunodeficiency, our lives became a whirlwind of hospitals and doctors’ offices. There were some treatments available, bu...
A Posture of the Heart
Vicki’s Voice: I have invited a special team member of the Jeffrey Modell Foundation to be a guest blogger on Vicki’s Voice. My inspiration, my words.Read her
Bright Lights, Dark Nights
Vicki’s VoiceMy inspiration…my wordsBright Lights, Dark NightsThey say New York is the “city that never sleeps”, but from Ma...
Tienes Que Saber
LA VOZ DE VICKI
"You Gotta Know!"
My ins...
JMF Spotlight Series: Yolanda, always “do something” with heart!
My name is Yolanda and I have been afforded the most amazing opportunity to work with a wonderful organization called the Jeffrey Modell Foundation.I started here on Dec 2, 2019, and one of ...
Guest Blogger: Katie Saria
I am so thrilled to introduce myself to the Primary Immunodeficiency community through this blog! My name is Katie and I am the newest addition to the Jeffrey Modell Foundation. While interviewing,...
Get to know Maggie Shaw
Over the past 30+ years I have had the privilege, although sometimes bittersweet, of meeting families who have been affected by Primary Immunodeficiency and other rare diseases.Recently I me...
Do Something: The Jeffrey Modell Story
As many of you know, we created the Jeffrey Modell Foundation because of Jeffrey’s plea for us to “Do Something!”Over the last 32 years, we have been inspired and motivated by his plea. What...
Guest Blogger: Fred Modell
When Hollywood producers reached out to Vicki and me and said “you have to tell the story of Jeffrey and the Foundation”, I asked them… "why would anyone care?”I was flattered,...
Global PI Village "Spotlight" Series: Bethany Metzroth
Name: Bethany MetzrothWhen did you start working with the JMF? Children’s National started working with the Jeffrey Modell Foundation in 2014. On...
Global PI Village "Spotlight" Series: Dr. Michael Keller
Name: Michael KellerWhen did you start working with the JMF? I first began working with the Jeffrey Modell Foundation after receiving a Translati...
Global PI Village "Spotlight" Series: Pere Soler-Palacin, MD, PhD, MsC
Name: Pere Soler-Palacin, MD, PhD, MsCWhen did you start working with the JMF? We started data sharing in 2007 and have been recognized as a...
Steve Bursley’s “One Tough Ride”
On Saturday, September 19th, our friend and hero, Steve Bursley, will be embarking on his traditional “One Tough Ride”, dedicated to his son Nicholas who has Primary Immunodeficiency.
Global PI Village "Spotlight" Series: WPIW Edition ~ Ruth Herrera
Name: Ruth HerreraTell us about how you learned about JMF and World PI Week! Ten years ago I started working for Dr. William T. Shearer as his ad...
Global PI Village "Spotlight" Series: Grant Ginsberg
Name: Grant Roberts GinsbergWhen did you join JMF? I joined JMF in July of 2014.Role: Senior Program Director. My role includes mark...
Learning
Learning. It’s one of those things that happen whether or not we want to or even realize it. It happens all around us, and never ends.Every day you can learn something new, wheth...
Global PI Village "Spotlight" Series: Dr. Juan Aldave
Name: Juan Carlos AldaveWhen did you start working with the JMF? On December 2011 I evaluated a 2-month-old girl with severe mucocutaneous candid...
Guest Blogger: Jason Shuman "Three Lessons the Modell’s Taught Me"
Three Lessons the Modell’s Taught MeAfter being diagnosed with Primary Immune Deficiency at 6 months of age in 1991, my parents were uncertain about what the future had in s...
my inspiration, my words
I would like to warmly and personally welcome you to the Jeffrey Modell Foundation’s Global PI Village blog, “my inspiration, my words.” ...
JMF Programs - All About KIDS Day
When we started the Foundation, one of our goals was to make sure that no other child living with Primary Immunodeficiency would have to be alone. Inspired by Jeffrey, we created K...
Rare Disease Day – Get Involved!
Today is Rare Disease Day, the rarest day of the year! We are proud to spotlight the over 300 million people worldwide living with a rare disease, and hope you'll continue to join us on our mission...
International Women’s Day: Vicki Modell
On International Women’s Day, we are proud to celebrate the extraordinary accomplishments of our very own Vicki Modell, co-founder of the Jeffrey...
What are…T Cells vs. B Cells?
Our body’s number one defense from infections, germs, and bacteria is our immune system. Our immune system works 24 hours a day, 7 days a week to keep us healthy! However, some people are born with...