Today, we'd like to introduce you to one of our Associate Directors of Marketing and Communications, Stephanie, in the newest installment of our "Get to Know JMF" series.
Why did you decide to work at JMF?
Before joining JMF, I worked at another rare disease focused nonprofit for 5 years. I have immense respect for patients and families battling rare diseases and have witnessed their incredible resilience and bravery firsthand. After learning more about JMF’s mission, especially through the “Do Something” documentary, I felt that I could make a difference for the Primary Immunodeficiency community. I’m honored to help further the outstanding legacy of innovation and support that Vicki and Fred Modell and the JMF team have built and sustained for the past 35 years.
Briefly describe your role at JMF.
As one of two Associate Directors of Marketing and Communications, I focus on raising awareness and expanding the organization’s reach through content creation, social media strategy and management, digital and out of home advertising, and more. The Foundation’s focus spans 500 different genetic disorders, our network of doctors extends to 87 countries, and our program areas vary from research funding to physician education to direct patient support and so much more. The wealth of information and stories to tell from PI patients and families as well as medical professionals and scientists around the world is astounding. I’m thrilled to have the opportunity to shine a light on this community and how JMF is improving quality of life and discovering treatments and cures for PI.
What would you like people to know about your work?
Rare diseases aren’t so rare. Primary Immunodeficiencies alone are estimated to affect 10 million people across the globe. But regardless of that breadth, the chance to help just one family affected by PI is well worth it. These families count on JMF for support and hope for a better future. You can be a part of building that future by joining us on our mission.
What inspires you?
I’m inspired by tenacity -- people who fight to achieve their goals. That’s why I am so inspired by the PI community. In the short time I’ve been at the Foundation, I’ve already met individuals with PI who, on top of all their obligations, fiercely advocate for themselves and their peers. I’ve spoken with parents from various countries willing to travel anywhere to access better care for their children. The persistence and grit of this community is extremely inspiring. And it’s built into JMF’s fabric as well; Vicki and Fred Modell founded JMF after losing their son Jeffrey to complications of PI. Today, the Foundation’s work has saved countless lives.
What three words would you choose to describe yourself?
Creative, Loyal, Determined.
What is your favorite JMF memory?
I’m a newer member of the JMF team, having joined in May 2022. My favorite memories so far are the conversations I’ve had with community members on social media. It’s been wonderful to meet patients, parents, and researchers from across the globe. I’m looking forward to making many lasting memories as I continue my time at the Foundation.