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Social Impact Heroes: How Vicki and Fred Modell of the Jeffrey Modell Foundation have made a huge dent in the struggle against Primary Immunodeficiency

Yitzi Weiner

Something that Jeffrey would say to us often is, “Mom, Dad, please do something. You went to college, you’re smart. Please do something.” Little did he know, we were doing everything we could. After he died, we made it our life’s mission to do something for the families out there going through similar disappointments and hardships. For ourselves, we learned “life is not about waiting for the storm to pass… it’s about learning to dance in the rain”.

As a part of my series about “individuals and organizations making an important social impact”, I had the pleasure of interviewing Vicki and Fred Modell Co-Founders, Jeffrey Modell Foundation.

Vicki and Fred Modell established the Jeffrey Modell Foundation, a 501(c)3 nonprofit organization, in 1987, in memory of their son Jeffrey, who died at the age of fifteen from complications of Primary Immunodeficiency — a genetic condition that is chronic, serious, and often fatal. JMF is a global patient organization devoted to the early and precise diagnosis, meaningful treatments, and ultimately, cures — through clinical and basic research, physician education, patient support, advocacy, public awareness, and newborn screening.

The Modells have established the Jeffrey Modell Centers Network, which includes 821 Expert Physicians, at 379 academic teaching hospitals, serving 294 cities, 86 countries, spanning 6 continents, and growing. Remarkably, more than 100 new genes have been discovered at Jeffrey Modell Centers, and the JMF database has identified more than 200,000 patients with 400 specific defects.

The Jeffrey Modell Foundation has organized more than 50 scientific symposia worldwide, attended by hundreds of researchers and clinicians from over sixty countries.

Over the past decade, Vicki and Fred have appeared before the United States Congress to advocate for Newborn Screening for SCID. As a result of their efforts, the U.S. Secretary of Health and Human Services recommended SCID to the National Core Panel, the first condition to be added in the last twelve years. Advocating one state at a time, JMF implemented population-based SCID newborn screening in all 50 states and Puerto Rico. To date, more than 27 million newborn babies have been screened for SCID in the US.

The Foundation has funded numerous post-doctoral fellowships and Jeffrey Modell Endowed Chairs in Pediatric Immunology Research. In addition, the Modells established the Jeffrey Modell Immunology Center, a building constructed, at the Harvard Medical School. The Foundation has launched numerous research programs, which have awarded millions of dollars in grants to physicians/scientists worldwide.

The Bill & Melinda Gates Foundation and the Jeffrey Modell Foundation launched a working collaboration to eradicate polio worldwide. The partnership called for the Jeffrey Modell Foundation to conduct a surveillance study of immunodeficient patients to identify poliovirus excreters, recruited from 25 Centers in the Jeffrey Modell Centers Network. The World Health Organization (WHO) and the U.S. Centers for Disease Control and Prevention (CDC), partnered together with JMF and the Bill and Melinda Gates Foundation.

The Modells have published manuscripts and have received numerous awards, honors, and recognition for their support of the Primary Immunodeficiency patient and physician community…

More than 33 years after its creation, the Jeffrey Modell Foundation continues its mission of hope, advocacy, and action by vigorously supporting physicians, researchers, and the ever-expanding global patient community- directing its efforts toward early diagnosis, meaningful treatments, equal access to care, and, ultimately, cures for Primary Immunodeficiency.

To learn more about the Modells and the Jeffrey Modell Foundation please visit: www.info4pi.org

Thank you so much for joining us, Vicki and Fred. Can you tell us a story about what brought you to this specific career path?

We lost our son, Jeffrey, at the age of fifteen from complications of Primary Immunodeficiency (PI) — a genetic condition that is chronic, serious, and often fatal. At the time of Jeffrey’s death, there was very little information about PI and what caused it. All we knew was that his immune system was defective, and all we could do was hope that he would grow out of it. After years of second chances, Jeffrey became ill and did not recover.

About a year after Jeffrey’s death, with the encouragement of family and friends, we started the Jeffrey Modell Foundation (JMF). Our goal was to find better answers to what took Jeffrey’s life, and if we could prevent even just one family from that, then it would be worth starting the Foundation.

We established JMF, a 501(c)3 nonprofit organization, in 1987. The Foundation is now a global patient organization devoted to early and precise diagnosis, meaningful treatments, and ultimately, cures — through clinical and basic research, physician education, patient support, advocacy, public awareness, newborn screening and genetic sequencing.

Can you share the most interesting story that happened to you since you began leading your company or organization?

Severe Combined Immunodeficiency (SCID), the most deadly form of PI, became a focus for the Foundation to advocate vigorously for newborn screening. Even though Jeffrey did not suffer with SCID, we could not bear watching babies die of SCID because they were not screened for the condition. In our research, we learned that there was an effective and inexpensive way to screen with the Trec’s Assay. We were invited to testify in Congress requesting funding support for screening. Our efforts failed from 2001–2006, but in 2007 at a meeting at CDC, we offered matching funds with the State of Wisconsin to do a Pilot Screening Program for SCID, screening 10,000 newborns. A baby with SCID was discovered, transplanted and cured. The mother said afterwards “because of Vicki and Fred, I got to be a mother. How do you express thanks for something like that?”

It was a beginning for us. We contacted every state including, governors, public health departments and state legislatures. The states said they had no money for this in their budget and the condition was too rare. The race was on! The sooner you learn of the baby’s condition, the odds are 95–100% that the baby can be treated and, often, cured. If you don’t know the newborn had SCID, the baby probably would not survive to his/her first birthday. With this urgency, we raised the funds and offered $1 for every newborn screened in all 50 states.

Today, all 50 states are screening for SCID. 27 million newborns have been screened in the U.S. and 21 countries have formally started population screening or pilot programs. With this, thousands of babies in the U.S. and all over the world have now been saved.

Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?

I wouldn’t label this as a mistake, but, something funny that ended up helping us create PI awareness and research was when a lobbyist told us, as Jeffrey’s parents, that we needed to split up and advocate separately to make strides in declaring an official Primary Immunodeficiency Awareness Week. We were always in this together, so to hear someone tell us we needed to separate to enhance our power, it was a shockingly, yet funny piece of advice that really worked for us to pass the awareness resolution. Now, that week is celebrated April 22nd — 29th throughout the world.

Can you describe how your organization is making a significant social impact?

As a Foundation, we understand how important it is to have a strong focus in everything we do. So each and every day, we keep our minds and our hearts set on making a world of difference in the lives of patients with Primary Immunodeficiency by:

Can you tell us a story about a particular individual who was impacted by your cause?

While millions of newborns are now screened for SCID, one family in particular sticks out in our mind that has been impacted by our work.

Andres and Paulina Treviño have a son Andy, who suffered from a rare form of Primary Immunodeficiency. He had to be in the hospital for almost 1,000 days from birth, in the ICU 3 times, operating room 30 times and the family spent birthdays, holidays and New Year’s at the hospital. By the time he was one, Andy had suffered a number of near-fatal infections. Their son’s sickness took the family from Mexico City to Boston Children’s Hospital, one of the first Jeffrey Modell Diagnostic and Research Centers that we had established. We met Andy, Andres and Paulina at a family-event held by the hospital, asked about their son and invited them to join us. After talking through everything they had gone through, we suggested the possibility of a bone marrow transplant, and how it could possibly help their son.

With that information and after discussing it with doctors, Andres and Paulina learned that having a second child that might be a match could possibly save their son. The family ended up having a daughter, and Andy underwent a STEM cell transplant, ultimately saving his life.

Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?

To date, 341 expert physicians representing the world’s leadership in the areas of diagnosis, management and treatment of Primary Immunodeficiencies have signed the Resolution. It has been made available to government officials globally, in at least 86 countries.

How do you define “Leadership”? Can you explain what you mean or give an example?

According to Webster’s dictionary, a leader is one who demonstrates initiative and effectiveness; an individual who is a guide or conductor. Here are the ways we have demonstrated leadership:

  1. Establishing the Jeffrey Modell Foundation 33 years ago having and raising more than $750 million to date.
  2. Created the Jeffrey Modell Centers Network of Research and Diagnostic Centers reaching 75% of the world’s population.
  3. Started Newborn Screening for SCID and all 50 states are now screening. 27 million babies have already been screened — 21 countries have followed.
  4. Created and distributed a Global Resolution signed by 341 of the World’s experts to at least 86 governments around the world.
  5. Piloted Gene Sequencing in 21 Jeffrey Modell Centers. Diagnosis, management, and treatment were altered in 45% of 159 patients, changing outcomes. There was an approved therapy for 80% of the participating patients.
  6. Building upon the successful Pilot Program, “Jeffrey’s Insights” Program for Genetic Sequencing is now offered to 379 Centers worldwide.
  7. The Documentary film, “Do Something: The Jeffrey Modell Story” has already reached 225 million views in 95 countries on all digital platforms and available in 7 languages.

The trailer to the film is 2 ½ minutes and can be viewed by clicking here or visiting www.dosomethingdoc.com

  1. The Jeffrey Modell Centers Network, Newborn Screening, the Global Resolution, Genetic Sequencing, the documentary film and funded research has reached and impacted millions of families around the world.
  2. Jeffrey’s voice… Jeffrey’s plea to his parents and doctors that we “Do Something”, has been heard and has impacted children and families he would never know. Vicki, Fred and the Jeffrey Modell Foundation are putting an end to the patient’s heart wrenching diagnostic odyssey, enhancing quality of life for the affected patients and are fully engaged to save lives all over the world… one patient at a time.

Success — A Jeffrey Modell Foundation Board Member recently asked us, how should we measure success? Is it the funds we are able to raise? Is it the return on investment? Is it the data that we collect? Is it the programs that we implement? Is it the number of Centers of Excellence that we establish and support?

We thought long and hard about this, not only as it affects us, but more importantly, how do we measure the 33-year performance of the Jeffrey Modell Foundation?

We concluded that the greatest investment any of us can make is in the lives of others, especially children. The returns are tremendous! The value is unimaginable! The pride is more profound than a billionaire’s bank account or someone’s long list of accumulated assets.

When we are able to profoundly impact upon the lives of newborns and children somewhere in this world, it is not a measurement of how we are doing, but rather a measurement of how the world is doing!

Indeed, we have been blessed to have met many of those children and their families in the United States and throughout the world. We embraced those precious children whose lives were saved and improved by the brilliance of their doctors. We saw tears in the eyes of the children and their parents as they whispered their thank yous to us…to all of us…for making the greatest investment we will ever make in our lives. We should thank them for their courage and the joy and personal gratification we received in helping them.

What are your “3 things I wish someone told me when I first started” and why. Please share a story or example for each.

In 2007 we built the Jeffrey Modell Immunology Center on the main quad of the Harvard Medical School. It wasn’t easy. The Harvard Board and its lawyers said, “We have enough buildings, and we don’t need another.” But that didn’t stop us and the building has become the Immunology focal point for 18 academic hospitals surrounding the Harvard Medical School. Our Center conducts an ongoing series of over 400 symposia, conferences, seminars, grand rounds, and lectures annually. It is home for 194 classes in immunology and 186 workshops and receptions. It surely was important for us, but in retrospect, it was absolutely in Harvard’s own self-interest.

We reached out to a “Big Pharma” company and miraculously we got a meeting. We told our story and the Executive who invited us responded: “we are in the pharmaceutical business. Why would we want these patients to be diagnosed and treated? That would quite simply reduce our sales and profits!” The meeting quickly ended. This was an obstacle that we sought to overcome in a very short time. We did, and partnered with one of that company’s major competitors, demonstrating that a collaboration was in their self-interest. It took initiative and we tried to be effective. We set a vision, developed a road map, asked for help to achieve our goals, asked questions, and, above all, we listened.

We are committed to patients, and one story tells it all! At one of our KIDS Days, I overheard a conversation between two 12-year-old girls with Primary Immunodeficiency. The first girl asked her friend, “Do you kiss boys?” The 2nd girl said, “of-course!” Her friend asked, “Did you tell your mother?” “of-course not… but, I told my Doctor”. We recognized the importance of patients spending special moments together; sharing their fears, their hopes and their dreams. Since that time we have supported patients and provided grants to over 200 “grassroots” organizations in the U.S. and around the world.

You are a person of enormous influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger.

We now know that immunology resides at the very center of medical research. It has become the core overlapping discipline, involving nearly every aspect of healthcare and disease management. Insights to interpret genomic data can now shift the emphasis away from just treating symptoms to actually preventing disease, a completely new paradigm in how we approach a range of conditions.

Advances in our understanding of immune response are unraveling mysteries relating not only to Primary Immunodeficiency diseases, but to Cancer, AIDS, Lupus and Diabetes. Heart disease and Alzheimer’s now appear to be linked to a state of chronic inflammation triggered by immune response.

This unprecedented stream of discovery will have practical impact on the lives of all of us… our parents, our children, our grandchildren, our brothers, sisters, and those yet to be born. Every family will be affected! There is great hope, but hope is not enough. There are also great challenges for all of us, and that’s what we must continue to do that is different.

This is our moment, and we need to seize this opportunity to change outcomes and produce results that really do make a difference.

Scientific breakthroughs may have come too late for Jeffrey. But for those children that follow, who Jeffrey would never have a chance to know or to meet, their lives will be enhanced during the most exciting period of scientific discovery ever!

This gives patients real hope. This gives them a voice. This gives them a chance for a healthy, productive, and meaningful life, defined not by their disease, but by their aspirations, their ambitions, and their dreams. It can turn tears to laughter and fear to wonder!

Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?

Is there a person dead or alive whom you would love to have a private breakfast or lunch with, and why? **PLEASE NOTE THE BELOW ANSWER IS SOMEONE WHO PASSED AWAY

We think President Roosevelt had it exactly right, and we would have liked to share stories of how those words shaped his life… and perhaps ours, as well.

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