Super T’s Mast Cell Foundation continues Taylor’s vision to raise awareness about Mast Cell diseases
October 18, 2023
By Tammy Nearon
RARE Mom & Advocate
Taylor was the visionary behind Super T’s Mast Cell Foundation. I was her supporter. She was to be the face, the voice, the mastermind behind everything Super T’s. I was to help with administration. This all changed when my daughter passed away in September 2017.
Taylor wanted Super T’s Mast Cell Foundation to be a foundation for the mast cell disease community, raising the necessary awareness, so patients never felt alone, isolated, or forgotten. Taylor was infuriated at the duration of time to receive her diagnosis, cost and quite frankly treatment from medical providers she received along the way. She didn’t want other patients to be navigating this disease alone. Taylor cared about every patient she met, either via text, email, or conversation. This was the reason Super T’s Mast Cell Foundation was born.
And before Taylor passed, she shared her desire for Super T’s to continue and grow. As the only organization providing financial support and other resources for mast cell patients, we are more than Taylor could have ever envisioned. Super T’s provides emotional and tangible support patients truly appreciate and welcome. They continually share their appreciation on having a foundation that is accessible with responding to questions. This was something extremely important to Taylor. She wanted patients to know they mattered. Their questions, their concerns mattered.
How does this all connect Super T’s Mast Cell Foundation to mast cell disease awareness day? As an organization, each year we hold the Superhero Showdown Race, the first Saturday in October. We do this as an opportunity to kick start the month with information to our participants about mast cell disease. We share facts about mast cell disease to our participants via the RunSignUp program. We invite our patient ambassador to share their story leading up to the race on Super T’s Wisdom Wednesday Instagram Live platform, as well as on race day. They share how this condition has impacted them, their family, and friends. Hearing from a patient ambassador on the morning of the Superhero Showdown Race always provides encouragement to our hundreds of participants both on-site and virtually. We encourage those who run, walk, or stroll virtually to gather others with them and hold their own Superhero Showdown. Taylor always had visions of multiple Superhero Showdowns occurring simultaneously on race day. How cool, right?
Throughout the racecourse we even have mast cell disease facts. Super T’s Mast Cell Foundation uses the race as one way to increase awareness of this underfunded, and under resourced disease community. The Superhero Showdown Race is a vital part of our mast cell disease awareness campaign. From October 1-20, we post mast cell disease facts, and resources on our social media platforms.
Though Mast Cell Disease Awareness Day is October 20th, Super T’s Mast Cell Foundation believes we must make everyday a day to raise awareness for our patient community.
Email: [email protected]
Sign up for updates straight to your inbox.