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Young parents Fred and Vicki Modell are overjoyed by the arrival of their first child, a perfect baby boy they name Jeffrey. But just months later, it becomes clear that something is wrong. Jeffrey is diagnosed with a rare disease that leaves him frequently sick and perilously susceptible to even the most common cold. He begs his parents to “Do Something” and though they desperately try, Jeffrey ultimately succumbs to his illness at the age of 15.
Out of their devastating loss, Fred and Vicki turn to their enduring love for each other to find the strength to fulfill their promise to Jeffrey and they resolve to ‘do something.’ With just $500 in the bank, the couple sets out in search for answers to what took his life. Guided by Jeffrey’s memory and the hope to help just one child, Fred and Vicki turn pain into purpose and end up touching the lives of parents and children all across the world. Millions of lives have been forever changed because of Fred and Vicki's determination to “Do Something.”
Welcome to JMF’s blog, Vicki’s Voice! We love hearing from people in our community, and our blog provides a meaningful platform for us to communicate and connect. Here on the blog, we share more personal stories about our programs, patient experiences, Foundation milestones, caregiver health, updates from the lab, and more topics to support our global PI community.
Do you have a request or suggestion for future topics? Share your ideas by sending us an email: email@example.com.
Every year it takes over 130 plasma donations to treat just one patient with Primary Immunodeficiency. A wonderful way to give back and get involved on Giving Tuesday is to sign up to donate plasma and give the gift of life.
Our global patient community depends on plasma donations from donors like you to live happy and healthy lives. There is currently a desperate need for plasma, and you can be the solution that offers hope for PI patients worldwide! Not only will you give the gift of life, but in the United States, but you’ll also be compensated for your donation. Find a plasma donation center near you.
Together, let’s continue to raise awareness, educate others, and give the gift of life!
Welcome to the next edition of JMF Defined! Today we’ll be defining the word IMMUNOLOGY.
IMMUNOLOGY is the study of the immune system, which is our body’s main defense from germs, infections, and more. Our immune system works 24/7 to keep us healthy and strong. An immunologist is a physician whose expertise is the study of the immune system.
Want to learn more about your immune system? Check out our immune posters for adults and children, available to download here.
We are excited to share November's #WeArePI challenge in collaboration with the Immune Deficiency Foundation (IDF): How has treatment impacted and improved your quality of life?
Many of you have shared how your life has positively changed after understanding more about your specific Primary Immunodeficiency. Visit any of our social media platforms @info4pi to share your treatment story, specific treatment, and how your life has changed since receiving proper treatment. We’ll share your responses to help raise awareness about the importance of proper treatment and spark conversation!
Don't forget to tag us @Info4PI, the IDF @IDFCommunity, and our challenge hashtag #WeArePI so we can see your responses and share them with our global PI village.
We are delighted to share the 10 Warning Signs of Activated P13K Delta Syndrome (APDS), presented in partnership with Pharming.
APDS is a type of Primary Immunodeficiency where the immune system doesn't function properly. This means that people with APDS may experience a wide variety of signs and symptoms, making it challenging to recognize. If you or someone you know is affected by two or more of the Warning Signs, speak to a physician about the possibility of APDS:
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 Signs, they were all properly diagnosed and treated!
Now it’s your turn! What do you want to be when you grow up? Download the template above, write in what you want to be when you grow up, and then share it on social media. Don’t forget to tag us @info4pi so we can share your dreams on our page!
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 with Mitchell about the development process of the new campaign, what inspires him, and what he hopes people will learn from our new ads. Enjoy!
What does the When I Grow Up campaign mean to you?
Growing up, my family didn’t have that much in the way of material things. As the youngest of three children, even in my formative years my siblings encouraged me to see beyond what was and that anything is possible if you can dream it and do the work.
When I first met Vicki and Fred nearly 20 years ago, I was just finding myself as a director and storyteller (and starting our agency, HQ Creative). Their strength in pursuit of helping others and love of family inspired me to connect the dots to the gift my sister and brother gave me…the power of dreams. IF these children we’d introduce could dream of growing up, then they could fight to overcome the challenge of PI and live full positive lives.
What was your favorite part of developing and creating the new campaign?
Personally- it was the family reunion aspect. The JMF/HQC family takes such pride in watching the children we work with accomplish so much in their careers. Often, it’s their first or second professional job. So, when Vanessa shared that the PSA distributors were interested in continuing the “When I Grow Up campaign,” it quickly became clear that we had to ask Sam (our Teacher) and Olivia (our Dancer) to return all these years later. They and their families had all become like family to Fred and Vicki, so we had faith. Once they agreed, then professionally as a creator, I realized we had a chance to do something very few in this arena ever have done - tell the continuing story of these characters as they do in fact Grow Up, holding onto their dreams, while facing the daily challenges of PI.
What do you hope viewers learn or come away with when they see the new ads?
3 simple things:
What does JMF’s global mission mean to you?
Bluntly, JMF’s global mission has become part of my personal and professional DNA. Professionally, they took a chance on HQ and me very early in our history. I believe we connect with people through the positivity of our message. That connection allowed JMF’s mission to reach and impact the lives of so many children and their families. Personally, I can never repay the debt I have to them.
These campaigns helped give me my professional purpose, and in their evolution into a truly global force for healing, proved that my siblings who inspired me were right, anything IS possible.
Today we are thrilled to announce our newest PSA campaign! For nearly twenty years, the Foundation’s iconic “When I Grow Up” PSA campaign has encouraged public awareness for Primary Immunodeficiency (PI) through uplifting and informative messaging. The PSAs are meant to inspire children and families to imagine healthy futures where children can follow their dreams.
Our new campaign encourages viewers to “Know the Warning Signs” of PI to ensure the earliest possible diagnosis and proper treatment to improve quality of life. The campaign builds on the “When I Grow Up” branding by introducing a new character who wants to be a director when she grows up. Thanks to the 10 Warning Signs, she has a chance to grow up and say, “lights, camera, action!” A second segment of the campaign depicts the evolution of two of our beloved characters who have grown into teenagers and are following their dreams. They were properly tested, diagnosed, and treated at a young age, and now they will grow up and achieve their childhood dreams. The new ads work in tandem to demonstrate the importance of early diagnosis; when children living with PI are properly treated, they can grow into healthy, passionate teenagers and pursue their dreams, thanks to the 10 Warning Signs.
Stay tuned this week for Q&As with our founders, creative team, and behind the scenes content on our website and social media pages. We hope you love our new ads and can’t wait to hear what you think! Please join us in spreading our message about the importance of early diagnosis and treatment. Together, we can save more lives and continue to create brighter and healthier futures for PI patients and their families worldwide.
Welcome back to another edition of Updates from the Lab! This past month we received our eighth consecutive four-star rating from leading non-profit evaluator, Charity Navigator and our research programs continue to fund critical work supporting Primary Immunodeficiency. Read on to learn more!
The Jeffrey Modell Foundation received our eighth consecutive Four-Star Rating from America’s leading non-profit evaluator, Charity Navigator! This is the highest possible rating from Charity Navigator.
Translational Research Program
Cycle 11 of our Translational Research Program continues to move forward. We invited 14 investigators to submit full applications in July, and grants will be awarded in November 2023.
Specific Defect Research Program
Applications are considered and awarded on a rolling basis.
c.h.i.l.d.r.e.n.! Research Program
Applications are considered and awarded on a rolling basis.
Today is day four of International Plasma Awareness Week! Today we’re sharing some ideas of how to spend time during your infusion:
Share your favorite activity in the comments on our Instagram page today! Remember to stay hydrated and get a good night’s sleep before and after treatment to keep yourself healthy and strong! Always consult your physician for the most accurate information.
Interested in supporting people living with PI who need plasma for lifesaving treatments? Find your nearest donor center here.
Today marks the beginning of the 10th annual International Plasma Awareness Week (IPAW)! This week, our goal is to raise awareness about the importance of plasma donation, encourage new donors, and increase public knowledge about plasma therapies for Primary Immunodeficiency.
Plasma makes up 55% of our blood, but it cannot be created in a lab. It takes 130 plasma donations to treat just one patient living with a PI for a year with infusions that contain lifesaving antibodies to improve quality of life. This week, October 2nd – 6th, you can support the IPAW efforts in the following ways:
Plasma donation is extremely safe and performed by trained nurses in a clinical space. Not only will you give the gift of life, but in the United States, you’ll also be compensated for your time. Together, let’s save more lives!
As Newborn Screening Awareness month comes to a close, we want to extend a heartfelt thanks to you, our global PI village, for your constant support, kindness, and devotion to our ongoing efforts. You inspire us, motivate us, and encourage us to Do Something MORE each passing year.
Together, we will continue to promote the earliest possible diagnosis through newborn screening to save as many lives as possible. It’s our earnest hope that our community will continue to Do Something alongside us to ensure that as many suspected and diagnosed PI patients will have unrestricted access to proper diagnosis, treatment, and disease management, no matter where they live.
Let’s continue to work together to improve the quality of life for PI patients and families worldwide so that more people experience healthy, strong, and full lives!
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 inspiring! Jeffrey never knew how he would change our lives, and the lives of so many thousands of children he would never meet, forever.
We created the Jeffrey Modell Foundation in celebration of Jeffrey’s life, and to give life. To all of the sons and daughters living with PI worldwide, know that our work is motivated by the opportunity to support you, advocate for you, and strive to find future cures for you.
Jeffrey taught us that to succeed in life you need three things: a wishbone, a backbone, and a funny bone. The wishbone is for the ideals, the goals, and the dreams; the backbone is for the fortitude and the courage to pursue them, and the funny bone is for the laughter and tears that are necessary for the little bumps along the road.
We encourage you to watch our documentary, Do Something: The Jeffrey Modell Story, to learn more about how Jeffrey inspired us to Do Something and get involved. It is thanks to you, our global PI village, that we are creating a brighter future for children living with PI so that stories like Jeffrey’s become rare.
We created a brand-new word search all about Newborn Screening to help kids learn and have fun in the process! You can even print out a copy to share with your friends. Can you find these words?
Advocacy, Antibody, Awareness, Heel Stick, Immune System, Infant, Newborn Screening, Saves Lives
Check out our Instagram page @info4pi later today to find out the answers!
International Plasma Awareness Week (IPAW) is coming up! The tenth annual awareness campaign will be celebrated from October 2 – 6, 2023.
There is currently an increased need for plasma, and you can be the solution! Head to your closest plasma donation center during awareness week, or whenever you have time. You can find your nearest plasma donation center here.
Together we can continue to raise awareness about the importance of plasma for people living with PI and save lives. Learn more about IPAW here.
Ronnie was born on Mary 9, 2017 in California. After Ronnie and his parents were discharged from the hospital, they received a call from his physician sharing that he has tested positive for Severe Combined Immunodeficiency (SCID) in his newborn screening panel. Their physician told them to return to the hospital as soon as possible to confirm the results of the newborn screening test.
Once the family arrived at the hospital, Ronnie was admitted for confirmation testing. His test results came back positive for SCID, and thankfully, because of his early diagnosis, his physician immediately developed a treatment plan. One option would be to undergo a bone marrow transplant, with his father as a donor, to receive new, healthy cells. Ultimately, after more research and discussions with Ronnie’s physicians, his parents decided to proceed with gene therapy as his form of treatment.
The treatment was successful, and now Ronnie is happy and healthy, all thanks to the results of his newborn screening test! Watch the full video here: https://www.cirm.ca.gov/our-progress/video/stem-cell-gene-therapy-fatal-bubble-baby-disease-scid/.
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. Charlie was the first newborn in the UK to test positive for SCID as a result of newborn screening. Today, Charlie is healthy and happy and loves to play outside! His story demonstrates just how important newborn screening is.
When was Charlie diagnosed?
Like all babies in the UK, Charlie’s midwife came to visit him at home on day 5 post-birth. He was thriving. Gaining weight through breastfeeding and very alert. His midwife took blood for his heel prick test. I thought nothing of this test and wasn’t worried about the result especially because Charlie is our second child and I naively thought he would be healthy.
10 days after the heel prick, I received a phone call from a consultant at our local children’s hospital. He explained that Charlie needed to have further tests ASAP, as he had tested positive for a condition called Severe Combined Immunodeficiency (SCID). Charlie’s dad, Dom, and I were extremely shocked and worried. We took Charlie to the hospital the following day. We tried not to read too much about the condition, so we were unaware at this point how seriously unwell Charlie was.
The team at Manchester Children’s Hospital was extremely helpful. They explained Charlie’s positive heel prick result and took him to have blood taken to confirm the SCID result. The team explained that SCID is a genetic condition whereby babies are born without a working immune system. Without treatment, Charlie would be unable to fight off bacteria and virus meaning he would get very sick and potentially die. The team explained what the next steps would be if Charlie was positive: he would need chemotherapy and a bone marrow transplant with the hope the new stem cells would engraft and give him a working immune system.
What was it like to find out the results of his SCID screening? How long did it take for him to receive treatment?
We both convinced ourselves Charlie would be fine, so went home to wait for the results. Charlie’s consultant called the same afternoon to confirm he had tested positive for SCID. The consultant explained that Charlie would need to be immediately transferred to the Great North Children’s Hospital in Newcastle to start transplant arrangements.
To hear the result of SCID and to learn he would need a bone marrow transplant was heartbreaking. I was advised to stop breastfeeding Charlie until my blood had been checked for viruses as it could potentially make him very sick. The more I read about SCID the more concerned I became. It felt like the whole world and everything in it could make my baby very sick. Strict isolation and good infection control measures were essential to ensure Charlie didn’t catch anything before his transplant.
The next day we travelled three and a half hours up to the Great North Children’s Hospital. Once we got there, we were instantly put at ease. The hospital ward there is also known as ‘The Bubble Foundation’ are extremely specialized in SCID. They taught us infection control for things such as diaper changing, started Charlie on prophylactic antibiotics, and showed us the air filtered room where Charlie would stay throughout the transplant process. The amount of hand washing on the ward to keep the children safe was insane, but essential.
Alfie and Dom had blood taken to check if they were a match for Charlie’s bone marrow transplant. Later that day we went home to strictly isolate until a donor had been identified. Unfortunately, Alfie wasn’t a match, but Dom was a good half match so could be Charlie’s donor.
Three weeks later Charlie was admitted to the hospital and started chemotherapy conditioning when he was just six weeks old. A week later, on Thursday, November 25th, 2021, Charlie had his bone marrow transplant. By some miracle we had managed to get him to his transplant infection free!
Thankfully, my bloodwork was clear, so I was able to continue to breastfeed Charlie. To our disbelief, Charlie maintained his happy, cheeky little self throughout the transplant. He suffered with mucositis and very bad sickness but still wanted to breastfeed throughout. We were extremely relieved when on day 11 post-transplant we were told Charlie’s neutrophils were starting to show, meaning the transplant was taking. By day 14, his cells had engrafted, and we were able to start taking him for short walks out of the hospital.
We stayed in the hospital for a couple more weeks following this to allow the cells to continue to develop. Charlie also needed time to recover and gain weight. All the sickness had meant he lost a lot of weight, and because he was a newborn, he didn’t have much to lose.
By some miracle, Charlie was well enough to be discharged from the hospital ward four weeks post-transplant on Christmas Eve. He moved into the parent’s accommodation with us, and we saw the outpatient team every other day for medicines and line flushes for four weeks.
One of the hardest parts for me and Dom was leaving our eldest son Alfie behind with his grandparents back in our hometown three hours away from the hospital. We wanted him to continue to attend school, but this posed a risk of virus and infection to Charlie, so we decided to limit our contact with Alfie throughout Charlie’s transplant. Not seeing Alfie was extremely hard, especially with it being Christmas time. I wanted to be in 2 places at once but knew it was the right decision to keep Charlie safe and well.
After two months in Newcastle, Charlie was discharged to go home. We were told his T cells wouldn’t show themselves for another two months at least, so isolation and infection control measures were essential. I moved myself and Charlie into my parent’s house to keep him safe, and visited Alfie at parks in the fresh air when I could. Charlie continued to be on prophylactic antibiotics and had biweekly immunoglobulin transfusions which contained antibodies to prevent him from getting sick.
How did you feel when he was cured?
It was huge relief when we visited the Great North Hospital in March 2022 at 120 days post-transplant to be told Charlie’s body was making his own T cells, which meant he would now be able to fight off viruses. His restrictions could be reduced!
By May 2022, Charlie was making his own T Cells and B cells, meaning the immunoglobulin transfusions and antibiotics could stop. In October 2022, just after his first birthday, Charlie had normal immune levels and was able to start receiving newborn vaccinations. If these had been given to Charlie as a baby, they would have made him very ill. Today, Charlie has just had his first live vaccine – a huge milestone!
Does Charlie have to undergo any treatments or visit any specialists today?
Charlie is now 18 months old, and he is your typical toddler. He attends nursery four days a week. He’s been swimming, visited farms and fed animals, played on the beach, slides down muddy slides, and loves to eat – even the bits that have dropped on the floor! He very rarely gets ill and hasn’t required any hospital stays since we got discharged.
Charlie is off all medicines and now only needs six-month reviews with the BMT team. He will have his blood levels checked yearly for life and we have our fingers crossed that his wonderful new T and B cells continue to work well for a very long time!
Why is it so important for you to share Charlie’s story with others?
The heel prick test to detect SCID at birth is only currently on trial in the UK and only in certain places. SCID started to be included in the heel prick test in some regions in September 2021. Charlie was the first baby detected via the heel prick test in the UK.
We will be forever grateful that the test was available. I had no idea I am a carrier of SCID. Without the test, Charlie would have got very sick before we realized there was a problem.
Take action! There are many ways to get involved and share the importance of newborn screening, this month and beyond:
Let's get involved!
International Plasma Awareness Week (IPAW) will be here before we know it! Get ready by purchasing our "Plasma Donors Save Lives" t-shirt, available now. Wear your plasma t-shirt during IPAW, October 2-6, to join us in raising critical awareness for plasma donation.
All proceeds will benefit our mission to improve the lives of people living with PI worldwide. Pick out your favorite color from our online store! We can’t wait to see you wearing your shirts.
Newborn screening saves lives—it’s that simple. By the end of 2023, nearly 42 million newborns will have been screened in the United States alone. Imagine what this number could be on a global scale if every country participated in a comprehensive newborn screening program?
Over the years, we’ve continued to expand our efforts globally to help diagnose, treat, and sometimes, even cure, as many newborns as possible. In 2007, we agreed to fund half of a pilot program in Wisconsin to screen for SCID. The pilot began in January 2008 and tested 10,000 newborns. During the pilot, one child, Dawson Bornheimer, was identified with SCID and then cured, which motivated us to continue working state by state until all 50 states, Washington D.C., Puerto Rico, and Navajo Nation implemented a comprehensive screening program in 2018.
Now, more than 15 other countries are conducting population screening across the globe, and even more are conducting screening in select areas. New pilot programs are being regularly introduced, and we will continue our advocacy and awareness efforts to share about the importance of newborn screening!
See if your country participates in a newborn screening program on our website. The best way to Do Something is to use your voice – if your country doesn’t participate yet, speak up to encourage action!
Did you know that newborn screening is one of the most successful public health programs worldwide?
According to the Centers for Disease Control and Prevention (CDC), more than 12,000 infants receive life-saving treatment each year as a result of newborn screening.
In the United States, approximately 1 in 300 newborns have a condition that can be diagnosed through newborn screening.
Nearly 4 million newborns are screened annually in the U.S. alone— imagine what that number could be on a global scale if every country participated in newborn screening? Early diagnosis is key to providing lifesaving treatment--newborn screening saves lives!