Madison Shaw - age 16 - high school junior - Southbury, CT, treated at Yale New Haven
Madison Shaw, founder and leader of Maddie’s Herd, is determined to have more victories
than setbacks while living with a Primary Immune Deficiency Disorder (PI), CVID. Maddie’s
Herd is committed to working with the IDF to create positive change in the lives of families
living with primary immunedeficiency disorders, especially kids. She will tell you that her
goal is to make sure these years of diagnosis, rebuilding my life, and choosing a path of
empowerment and advocacy are “just a prologue” of even greater things to come.
Maddie, as she likes to be called, has been always been an advocate for those in need. So,
when she was diagnosed with a Primary Immune Deficiency Disorder (PI) at age 12, few
who know her were surprised when she worked to raise funds for the ImmuneDeficiency
Foundation (IDF) in order to increase awareness about what it’s like to live with PI. Despite
having to balance goals and ambitions that can sometimes be bigger than her health can
support, she marshalled the support of her classmates and community, a herd - Maddie’s
Herd - to come together with enough zeal to create change. Since the age of 13, she’s
raised nearly $24,000 with a goal of reaching $50,000 before she graduates from high
school.
Beyond raising funds to increase awareness, Madison had advocated for legislative change
that maintains access to care for the seriously and chronically ill as well as offered
motivational speeches and acting as a patient representative.
A fun fact to share is that Maddie is mad about puns. Thus, noting that while a group of
Zebras is a herd, it’s also known as a dazzle or a zeal. In addition to her life as a zebra, she
is an avid reader, budding artist, and accomplished photographer. Her future is bright, and
she is hopeful about attending college and continuing to advocate for social justice through
her own magazine.