VICKI MODELL

MODELL--Vicki. Vicki Modell, co-founder of the Jeffrey Modell Foundation, died peacefully surrounded by friends and family in New York City on November 30, 2023. Vicki and her husband, Fred, celebrated 55 years of marriage earlier this fall, and they were each other's closest friends. Following the death of their son, Jeffrey, due to complications from Primary Immunodeficiency (PI), a group of rare diseases that affect the immune system, Vicki and Fred decided to establish the Jeffrey Modell Foundation. Throughout his life, Jeffrey asked them to Do Something, and together, Vicki and Fred created a lifesaving global network of physicians, researchers, nurses, industry professionals, support groups, and more, in celebration of Jeffrey's life, and to give life. Vicki was a strong, courageous, and empathetic leader, and was the heart of the Foundation for 37 years. She dedicated her life to the Primary Immunodeficiency community and touched the lives of millions of people. Vicki was a passionate advocate for patients and families living with PI worldwide and was dedicated to answering Jeffrey's plea to Do Something, always responding with courage, commitment, and compassion. Despite life's challenges, Vicki never took "no" for an answer, and continually pushed boundaries to persevere for what she knew was right. She was a natural leader and mentor for future generations in the field of immunology and always encouraged others to Do Something More. Vicki was committed to removing barriers and ensuring the best quality of life for patients and their families and devoted her life to making a difference in the lives of others. For years, Vicki and Fred lobbied in Washington, DC to encourage public awareness for PI and add Severe Combined Immunodeficiency (SCID) to the national newborn screening panel. Vicki led these efforts, sharing their story time and time again, speaking with state representatives, and educating countless others. One of her proudest moments was during the JMF-sponsored pilot for newborn screening for SCID when a baby boy in Wisconsin was discovered to have a very rare, combined immunodeficiency. He was screened and diagnosed, and then received a stem cell transplant which, ultimately, cured him. Not only did this little boy get a second chance at life, but Vicki felt as though Jeffrey gave him life. Remarkably, his transplant took place on Jeffrey's birthday, September 25th. Above all, Vicki was motivated by the opportunity to create a world in which patients could experience a brighter, more hopeful, and healthier future. To meet the rising need for referrals and specialized centers for patients living with PI, Vicki and Fred established the Jeffrey Modell Centers Network (JMCN) more than 20 years ago. The network has seen remarkable growth and includes 930 physicians at 415 institutions in 324 cities and 89 countries, spanning 6 continents to date. Vicki was a friend to so many, and loved attending global workshops and meetings, surrounded by her community. She was proud to support groundbreaking research, provide educational opportunities for physicians, pursue advocacy and awareness efforts, and encourage patient support programs worldwide. One of her favorite programs, Roots & Wings, provides lifesaving provide travel and related support to families whose child has been identified with a potentially life-threatening Primary Immunodeficiency requiring lifesaving medical care far away from home. Jeffrey asked Vicki to "Do Something" and she did. Thanks to her passion and resolve, countless lives have been saved. She was a figure of hope and her memory will live on as the guiding heart and strength of the Foundation, forever. Her dedication and love for patients and their families will be her legacy. A memorial service will be held to honor her life in early 2024.