On International Women’s Day, we are proud to celebrate the extraordinary accomplishments of our very own Vicki Modell, co-founder of the Jeffrey Modell Foundation. Vicki is a strong, courageous, and empathetic leader, and has dedicated her life to the Primary Immunodeficiency community by forwarding our mission of hope, advocacy, and action.
Today we would like to recognize Vicki’s years of leadership, stewardship, and mentorship for future generations of physicians, nurses, scientists, researchers, patients, families, and more. We hope you enjoy our interview with Vicki and feel inspired to Do Something to support the women in your life.
- You are a respected leader in the field. What do you hope the global PI community learns from your experience and expertise?
What I hope to impart to the world is that you can take your grief, personal loss of dreams, and loss of your child’s dreams, and do everything you can to make sure that others have the chance to dream and live full lives.
We’ve always advocated for earliest possible diagnosis and better access to treatment, and I’ve never taken “no” for an answer. Sometimes it might be a “maybe,” but I never accept a “no.” I have continued to persevere and advocate for what I know I believe in, which will hopefully lead to access to appropriate treatments throughout the world.
To be successful as a patient or advocacy organization, I think it’s very important to include components such as research, education for physicians and the general public, advocacy with government, and patient support programs so they have what they need along their journey.
Any success that I have had is because of the physicians who lovingly care for their patients, the nurses who administer their treatments, the pharmaceutical companies who have believed in us, trusted us, and supported us, the unsung heroes working in their labs day and night looking for discoveries, our incredible staff at the Jeffrey Modell Foundation who take our thoughts and our goals and turn them into reality, and of course, the patients, who compel us and inspire us to do more and to be better.
- What is your proudest moment to-date?
There have been so many moments that have been incredibly important over the past 35 years. My proudest moment was during the first 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.
We were invited to fly out to Wisconsin to meet him and his family, and were there on the day that he received his transplant. Coincidentally, the transplant was scheduled on Jeffrey’s birthday. Not only did this little boy get a second chance at life, but I feel as if Jeffrey gave him life, and so does his mother. We’ve stayed in touch and grown very close to the family. Now he’s a healthy 15-year-old playing football on his high school team!
- As a mother, what advice would you share to parents and families faced with a new PI diagnosis?
My recommendation to parents and families is to not let your child be defined by their disorder. Thanks to today’s incredible scientific progress and constant new discoveries, it’s important to prepare your child for adulthood. Encourage them to fulfill their own dreams and live a life that’s as normal as possible!
- How do you think Jeffrey would feel if he were here today to see the impact the Foundation has had on the lives of people living with PI?
I think Jeffrey would say, “Who, me? My name on global research projects and scientific buildings? I asked you to Do Something and you did.”
- What message would you like to share with the women in our global PI community?
Over the past 35 years, whenever I would travel the world and visit a new country, the common denominator was that women and mothers all love their children in the same way. No matter their ethnic or religious background, I would notice their love for their children, which is unlike any other love.
To all of the women who I’ve met, and those who I have yet to meet, my wish is that you can put your head down at night and feel hopeful and unafraid of the morning.
- What do you hope the future of the Foundation looks like?
It’s my hope that the Foundation will continue on its path with an enhanced vision to keep up with the medical and scientific discoveries that are sure to come.
My dream is that newborn screening for SCID and other Primary Immunodeficiencies will be approved in every country throughout the world, because it absolutely saves lives.
My other hope for the future is that gene sequencing will become routine for every child waiting for a diagnosis to lessen the burden of the diagnostic odyssey.
My hope for the future is that every child, wherever they live, should have a future. I’ll end with one of my favorite quotes: “Life is not about waiting for the storm to pass; it’s about learning to dance in the rain.”