Today we are thrilled to share a new spotlight interview with Fred Modell, co-founder of the Jeffrey Modell Foundation. Fred shared details about the history of World PI Week, the importance of awareness, and what he hopes people learn throughout the week. We hope you enjoy!
Why was it so important for you to make WPIW an official awareness week?
When Jeffrey was sick, no one had ever heard of Primary Immunodeficiency (PI). People were sick and no one had the answers to help them, so we wanted to go to the US Senate to create an awareness week (or month) to educate the public and physicians about PI and try to save lives.
You and Vicki spent years advocating for better PI recognition in DC. What was the process like? Who did you speak to?
Vicki and I first spoke to Senators Lieberman (CT) and D’Amato (NY) in 1993 about our idea to declare a Resolution to create an annual PI Awareness Week. They agreed to support our efforts, so Vicki and I went to Senate offices together to get as many Senators as we could to sign on as co-sponsors of the Resolution. Most of the staff members we spoke to had never heard of PI!
We ended up getting support from 29 Senators, but we didn’t have the numbers to pass the Resolution. Senator Lieberman told us to break into teams and go to 100 Senate offices again to tell Jeffrey’s story and share our work at the Foundation. We only had about 2-3 minutes per office to share our story! After three full days, we had 100% agreement from all Senators to co-sponsor the Resolution. Senator Lieberman took to the Senate floor to declare National Primary Immunodeficiency Awareness Week. We were so excited!
WPIW is now a global awareness event--the community has come so far over the years! What does WPIW’s extensive global reach mean to you?
When we first started the Foundation, we were focused nationally, but we continued to grow globally every year. Many global governments didn’t know about Primary Immunodeficiency, so we decided to expand our national awareness week on a worldwide scale to reach more people. That’s when it became World PI Week.
In terms of our global reach, I love to tell the story of our “Roots & Wings” patient who reached out to us from Mongolia in need of a match for a bone marrow transplant. Vicki got right to work, and reached out to our global network of physicians to ask if anyone might be able to help. Unbelievably, a match was found in Houston, Texas! The patient, a young child, was transplanted in Tokyo. This is a perfect example of how important our global reach is to help patients and families.
What do you think Jeffrey would say about WPIW if he were here today?
If Jeffrey were here today, he would say, “These are all young people like me. They aren’t alone!” Jeffrey never had anyone to talk to, and never met one other child living with PI. He would ask us and his doctors, “Isn’t there one other kid, anyone like me that I can talk to?”
If Jeffrey were here today, he would be glad that kids and their families have a close-knit community with common hopes and dreams and don’t have to be alone throughout their journey with PI.
What do you hope people learn during WPIW?
I want people to come away with HOPE. The reason we fought so hard for better awareness was so that people wouldn’t have to take no for an answer. All of our work is motivated by the opportunity to save one child at a time, one family at a time, and provide them with hope.
What is your favorite WPIW memory?
There are so many amazing memories, but one I think back on is our balloon launch at JMF HQ in New York City a few years ago. We gathered about 75 friends, board members, and donors on the sidewalk outside our office building to mark the occasion and show our dedication and commitment to patients worldwide. Members of the global Jeffrey Modell Centers Network joined in a simultaneous balloon launch in many countries all over the world! We are always so amazed and grateful when all of us come together to offer hope.