An Introduction to Super T’s Mast Cell Foundation

Super T’s Mast Cell Foundation was created in 2015 by my daughter Taylor upon receiving her diagnosis of mast cell activation disorder. After traveling over twenty hours to consult with a leading mast cell disease specialist, Taylor decided on our journey back home that other patients should never feel alone nor unsupported. Taylor envisioned a nonprofit providing financial support along with applicable resources for patients to utilize either while in the hospital or as needed. Taylor’s empathy and compassion grew for others who were suffering with a rare and/or under-recognized disease. She wanted to make changes so patients and caregivers didn’t feel alone, unsupported or fearful about how to tackle expenses while trying to feel better. Taylor intentionally provided opportunities for patients to receive grants to offset living and medical expenses. Her hope was to alleviate some of the financial burden associated with fighting a mast cell disease. That was the beginning of Super T’s Mast Cell Foundation.

 

Today, STMCF continues the same mission by creating awareness opportunities and education surrounding mast cell diseases globally. Our primary objective continues to be the support of patients through grants and education resources. A new initiative will create patient and provider registries. Also, in 2021 we will be providing educational seminars and conversations with providers and researchers to discuss treatment options and medications impacting our patient community. We hope these collaboration efforts will help not only our patient community but also other communities related to mast cell diseases. Finally, we will be developing local and regional meet and greet opportunities and support groups, fulfilling a need that has been frequently shared by patients.

 

How do we get the word out about who we are? STMCF offers a few platforms by which this is accomplished. In addition to maintaining our website, Facebook, and Instagram pages, we distribute pamphlets to physicians’ offices highlighting who we are. In 2020 Wisdom Wednesdays on Instagram was a successful addition to our organization.  This was an opportunity to have patients become involved and share their thoughts, ideas and needs within the community. Additionally, we spotlight and discuss mast cell diseases as well as those comorbidities affecting patients with one of our medical advisory council members. We gather Wednesdays on Instagram at 3:00 pm EST. Would you consider joining us @supertsmcfoundation?

 

Throughout the year we hold various fundraising opportunities including virtual gift card bingo, online auctions, Monte Carlo Night, and the Superhero Showdown Race held every year on the first Saturday of October. We also hold campaigns throughout the year to expand our growing monthly supporters. All proceeds support our grant program resources and advancing new research opportunities.

 

My daughter often said our organization is for patients so they should have a voice. Our patient community ranges from toddlers to adults, encompassing a variety of mast cell diseases and comorbidities. Having not only patient involvement but family involvement is also very important to Super T’s Mast Cell Foundation. Volunteers in our organization range from medical professionals, friends and family who want to be supportive, as well as patients themselves. We are always looking for volunteers. Anyone who may have an interest is asked to contact us via our website, www.supertmastcell.org.

 

As we continue to grow and evolve, I am most proud of my daughter and her willingness to take a leap of faith in order to follow her vision. I remember how it felt being a caregiver on a medical journey filled with many questions and concerns. At the time there wasn’t much in the way of resources. As a caregiver, I remember the what ifs and anger because of lack of information or support. I want patients and caregivers to know that you are not alone. At STMCF, we intend to provide medically based resources so patients and their families may make decisions necessary to them. We will not tell a patient what road they must travel nor what physician they must see; this is for patients and their families to decide. Reach out with questions, concerns or ideas. We are here for you, truly. My daughter never wanted a patient to feel alone. This is something we hold true to today, tomorrow, and every day going forward.

 

To date, we have been able to provide over $50,000 in grants to patients managing a mast cell disease.  Could you benefit from a grant? We offer the Arielle Davis Grant, the Taylor Nearon Grant, and the Super T’s Mast Cell Foundation Grant. Each has their own set of requirements necessary for the application to be approved. The grant selection committee evaluates all submitted applications when deciding recipient’s eligibility. 2021 grant information will be posted by February 20, 2021.

 

LOOK where we started

LOOK how far we’ve come

LOOK where we are going!!

 

By: Tammy Nearon

AKA- “Super T’s Mom”

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