[Congressional Record Volume 170, Number 30 (Thursday, February 15, 2024)]
[Extensions of Remarks]
[Pages E154-E155]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




              HONORING THE LIFE AND LEGACY OF VICKI MODELL

                                 ______
                                 

                          HON. ROSA L. DeLAURO

                             of connecticut

                    in the house of representatives

                      Thursday, February 15, 2024

  Ms. DeLAURO. Mr. Speaker, it is with a heavy heart but fond memories 
that I rise today to pay tribute to the life and legacy of an 
extraordinary woman and my good friend, Vicki Modell. Along with her 
husband, Fred, Vicki became a respected leader and fierce advocate for 
those diagnosed with Primary Immunodeficiency and their loved ones. 
Though she will no longer be a daily presence in our lives, those 
fortunate enough to have known and worked with her will most certainly 
carry on her legacy.
  In 1986, Vicki and Fred Modell lost their only son, Jeffrey, to 
Primary Immunodeficiency, a genetic disorder that leaves the body 
unable to fight off infections. Not long after their son passed away, 
the Modells created the Jeffrey Modell Foundation--not to commemorate 
Jeffrey's death, but rather to celebrate his life by giving life to 
others who suffer from the same illness. Today, the Foundation is a 
global organization devoted to early and precise diagnosis, meaningful 
treatments, and research toward a cure. Vicki was the heart and soul of 
the Foundation, and its continued mission to meet its ultimate goal--to 
find a cure--is her legacy.
  I first met Vicki and Fred when they came to me to advocate for 
increased federal investments in research of Primary Immunodeficiency. 
From our very first meeting, I was impressed, not only with their 
determination but their passion. They transformed the devastating loss 
of their child into a lifelong advocacy effort. Today, the Jeffrey 
Modell Foundation is recognized as a respected voice for advocacy, 
education, and research. I could not be more proud of the work we have 
done together to ensure federal investments in this critical work.
  In one of many remembrances, Vicki's family recounted the story of 
Jeffrey asking his parents to ``do something.'' Through her work at the 
Foundation and her unwavering advocacy, that was just what Vicki did. 
Whenever faced with challenges or obstacles, Vicki never took no for an 
answer--she just kept going. In doing so she made such a difference in 
people's lives. One of her favorite programs, Roots & Wings, provides 
lifesaving travel and related support to families whose child has

[[Page E155]]

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.
  As I stand today and extend my heartfelt condolences to Vicki's 
husband, Fred, as well as her family, friends, and colleagues, I am 
inspired to continue to work with them and the Jeffrey Modell 
Foundation to honor Vicki's memory by making a difference in the lives 
of those diagnosed with Primary Immunodeficiency and their loved ones. 
I look forward to the day when we realize her ultimate dream of finding 
a cure. I know I, like so many others, will keep the memory of Vicki 
Modell close as we continue this important work.

                          ____________________