I am so thrilled to introduce myself to the Primary Immunodeficiency community through this blog! My name is Katie and I am the newest addition to the Jeffrey Modell Foundation. While interviewing, I considered several wonderful foundations and nonprofits. What peaked my interest with JMF was, in addition to ultimately finding the cures for a disease, there was a strong focus on embracing the families of PI patients—especially mothers.
Vicki told me that while Jeffrey struggled with his condition, she never met another family and Jeffrey never met another child with PI. She described the experience as lonely and isolating; she explained the long hospital stays, the confusing treatments, the desperate paradox of insisting the doctors to run every possible test, but also wanting the needles and the prodding to stop. I imagine being a mother to a healthy child is like building a puzzle; as they grow you are adding pieces to eventually reveal the finished picture. Caring for a child with PI is like building that puzzle on the busy sidewalks of Times Square; sometimes it’s all you can do to simply keep the pieces from falling apart.
“We established the Jeffrey Modell Foundation with five specific objectives: to conduct clinical and basic research on PI; to educate primary care physicians about PI symptoms and treatments; to provide patients and their families with information and supportive communities; to advocate for greater support at the government level; and to raise public awareness about these diseases,” Vicki continues, “It was always my dream to have a happy, healthy child. But now I dream of helping mothers in the same situation I was once in."
The brave mothers, who refuse to accept their children’s medical mysteries, propel the Jeffrey Modell Foundation forward. Vicki and Fred were able to harness their fear and heartbreak into a mission to never let another mother go through a Primary Immunodeficiency diagnosis alone. The Jeffrey Modell Foundation is more than a philanthropic endeavor, patient advocacy group or any ordinary nonprofit: it’s a community searching for answers. Mothers are our strong, determined partners in this fight.
JMF’s relentless pursuit of mandatory newborn screening has ended preventable deaths of infants with SCID in the United States. This means thousands of mothers are building precious puzzles; excited and curious about the finished picture, instead of merely struggling to protect it from further damage. Each year, more physicians and nurses are educated about the immune system and 10 Warning Signs. Scientists and researchers are working harder than ever to find treatments and cures. What I have learned, is that behind every sick child with PI is a worried mother and standing behind that worried mother is the Jeffrey Modell Foundation and the community of hope it has built.