Emerson Student Wins Global Award for Immunodeficiency Advocacy Work

Emerson College political communication major Madison Shaw ’21, receives the Vassalli Award during the 2018 International Patient Organisation for Primary Immunodeficiencies (IPOPI) Conference in Lisbon, Portugal. Courtesy Photo

By Molly Loughman

A weakened immune system doesn’t slow down sophomore Madison Shaw’s personal mission helping others with primary immunodeficiency (PI) and other rare disorders.

Shaw’s relentless efforts over the last several years, raising money and awareness for the national patient organization Immune Deficiency Foundation (IDF), earned the political communication major international recognition.

“I think extending my platform to others is the one thing that makes me feel really connected and rooted in this world, so I feel the most fulfilled when I’m able to actually help people around me,” Shaw said. “There are facets of my life where I will always have to surrender to my health, but there are also things I can do to incorporate it in more positive aspects of my life or on the backend of this great mission.”

After being nominated three times, Shaw was chosen to receive the Vassalli Award during the 2018 International Patient Organisation for Primary Immunodeficiencies (IPOPI) Conference in Lisbon, Portugal. Shaw is the first American to receive the Vassalli Award, which was created in honor of Luciano Vassalli, a young adult with PI who in his short life raised a great deal of awareness for the condition.

“I’ve been doing speaking engagements with the National Organization of Rare Disorders, as well as the National Institutes of Health, so I’ve been able to travel all around the country, and that in and of itself has been a huge thing to celebrate,” Shaw said “[Being recognized] internationally was a huge honor and it’s comforting knowing I have connections to a broader community like that.”

According to the IDF website, “primary immunodeficiency diseases (PI) are a group of 350-plus rare, chronic disorders in which part of the body’s immune system is missing or functions improperly.” People with PI, which is caused by hereditary or genetic defects, are more susceptible to infections, resulting in recurrent health problems and oftentimes serious and debilitating illnesses. However, with proper medical care, many patients live full and independent lives.

“I essentially don’t have any immune system and can’t have a long-term memory in terms of how to fight illnesses or build up antibodies and things like that,” Shaw said. “Every time I’m sick, it’s like the first time my body has ever been sick, so it causes more damage internally and can snowball severely.

“I just have to be on top of it,” said Shaw, who receives monthly infusions of blood products in order to live a functional life.

An Answer, A Mission

Born with PI, Shaw went through 20 different doctors before her rare and chronic condition was diagnosed in the seventh grade.

Soon after, she became involved with the fundraising program of IDF, which is devoted to improving the diagnosis, treatment, and quality of life of people with PI through advocacy, education, and research. She joined kids her age for weekend getaways through IDF’s Teen Escapes.

“I started to build more of a sense of community around [PI], and I also learned how many people are so late to be diagnosed because of misinformation and because people don’t talk about that condition,” she said. “I started to see how common it was for people in that community to be delayed [in] health or fulfillment because of this tumultuous journey [due to] how little dialogue is around it, so I tried to get the word out there in some way.”

Her first major advocacy effort, when Shaw was in the eighth grade, was organizing a 5K walk at her middle school, which raised more than $10,000. From there, she transformed her passion into her own grassroots organization — Maddie’s Herd – which, since 2013, has raised $50,000 to increase awareness and boost research through various organizations, such as IDF, Make-A-Wish Foundation, and The Hole in the Wall Gang Camp, a free camp in Connecticut for children with serious illnesses and their families.

“I knew I wanted to continue the advocacy work, either through my own organization or on a more global scale, with health care crisis issues,” she said. “So when I was picking a college, I wanted something that was going to put me in the best position in the advocacy field, and Emerson was a good choice for that,” said Shaw, noting Emerson’s real-world application of learning.

Advocating for IDF for six years, Shaw now officially works with the organization as an IDF Teen Council member. The role has afforded her the opportunity to travel across the country, including to Capitol Hill to meet with and lobby legislators for improved health care policies and access to treatment for people with rare conditions that rely on top-tier medications.

“I knew I wanted to be a nonprofit health care lobbyist, and then I came [to Emerson] and realized there [are many] more layers to the real world,” Shaw said. “I’ve shifted my focus from doing national advocacy work to doing global crisis management work and understanding that interconnectedness – and that’s something I wouldn’t have had if I didn’t come to Emerson.”