article by Jessica Simpkins, MD, photo by Val Mohney
Many of us don’t understand how complicated and costly it can be when someone requires extra services to go about our day-to-day lives. Those of us who are able-bodied often take for granted how much of our world is designed for our convenience rather than the accessibility of all people. Mary McDirmid, founder and Chief Experience Officer of Special Abilities Network (SAN), understands these pain points as the daughter of a man with Parkinson’s and the mother of a child with a rare disease. She belongs to what is known as the sandwich generation of caregivers.
Years before co-founding SAN, Mary tried a variety of different jobs before landing on finance. “English isn’t really my first language. Math is probably my first language. So I thought to myself, ‘How do I translate that into my own business?’”
Mary McDirmid, founder and Chief Experience Officer of Special Abilities Network
In 2016 while pregnant with her second daughter, Mary became a registered representative of and offered securities and investment advisory services through MML Investors Services, LLC, Member SIPC. Things were going swimmingly until an ultrasound during a routine office visit showed that baby Ruth had tumors on her heart. She was told by her doctor that Ruth likely had a rare disease known as tuberous sclerosis.
In that moment, everything changed. Mary and her family had to prepare for a very different reality. “Ruth was in the NICU for 10 days after she was born, which was the least amount of time we anticipated. She had feeding issues, colic, and began having seizures at four months. I felt a sense of panic with starting my new job while raising two children, one of which with special needs. So I reached out and asked for help.”
Mary learned she could become certified as a Chartered Special Needs Consultant (ChSNC®) to have a better understanding of her family’s needs and also help other families facing similar challenges. “Financial planning when you have loved ones who require extra services is complicated. I want both of my daughters to be prepared for the world. Ruth’s path is going to look different than Charlie’s. She must always have medical care. We have to leverage the systems we have in place, such as federal and state benefits, but we also want her to have an amazing life,” Mary shares.
In 2021, Mary narrowed her financial planning services to focus exclusively on families of loved ones with special abilities. Half-way through 2022, she met Brady Murray, another financial advisor from Salt Lake City who is a father to two amazing children with Down’s syndrome. Together, they decided to “set this thing on fire” and founded the Special Abilities Network (SAN). Of note, SAN is not a subsidiary or affiliate of MML Investors Services, LLC, or its affiliated companies.
SAN’s mission is to “provide every family in the nation entrusted with a loved one with special needs the opportunity to receive the specialized planning they need and deserve.” Mary further explains: “Normal parents don’t understand all of the planning that goes into living every day when you have loved ones with special needs. Parent caregivers often live in survival mode, only thinking about what needs to happen in the next 24 hours. In the parent role, you have the opportunity to look longer term. We want to help these families have their financial, legal, and benefits needs in place so they have one less thing to worry about and can hopefully spend more time just being parents.”
Mary’s favorite part of being a financial planner to families with special needs is the very first interaction with them. “I love being able to sit with them in that space, have the empathy to ask the hard questions, and receive their stories. And I like being able to make connections for people. The more stories I have of parent-caregivers, the better I am at connecting them with others so they don’t feel alone.”
Beyond her work as a financial planner, Mary also strives to bring greater awareness to rare diseases. A rare disease is defined as a disease or condition that impacts less than 200,000 people in the U.S.. She recently testified in front of legislators on behalf of a rare disease bill. For the last six years, Mary has put together an event at WSU on Rare Disease Day in February. Each year there is a panel with a parent-caregiver, a patient with a rare disease, and a rare disease professional to talk to the medical professional students about the impacts of rare diseases.
“Rare Disease Day is always the last day in February, so that is February 28th this year. Last year we had 130 people attend via Zoom, so we are excited to see how many attend this year. Our goal is to provide feedback to medical systems to make them better in their care of patients and families with rare diseases,” Mary shares.
To parent-caregivers who feel overwhelmed, Mary offers her first experience with pediatric cardiologist Dr. Hrair Garabedian. “When I met Dr. Garabedian, his first question to me was, ‘Are you enjoying your baby?’ I cried my face off. The truth was, I wasn’t enjoying my baby. But it’s so important that we do. There are hard things, but there are also amazing things. When I drive Ruth to daycare in the morning, I don’t turn on the radio. I listen to her talk, sing, and roll down the window. I enjoy the randomness of her singing ‘The Wheels on the Bus.’ I don’t think everything is rainbows and unicorns, but if I can have just a little more hope and optimism than shame or sadness, I call that a win.”
You can learn more about SAN on their website www.specialabilitiesnetwork.com. For more details about WSU’s Rare Disease Day event, visit https://www.eventbrite.com/e/rare-disease-day-spokane-2023-tickets-525918846427.
Special Abilities Network is not a subsidiary or affiliate of MML Investors Services, LLC, or its affiliated companies. Supervisory office: 2901 West Blue Grass Blvd, Suite 320, Lehi, UT 84043.
