EPISODE 073 | Treating the Untreatable: Exploring the Mindset of a Rare Disease Parent Who’s Changed the World
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Today we’re talking with Mark Dant. He’s a dad (to a son named Ryan Dant), husband, and a volunteer board of directors chair at EveryLife Foundation in Washington D.C. as well as a volunteer Executive Director at The Ryan Foundation - both organizations exist to help families dealing with rare disease to have hope, empower their voices, and empower scientists to advance the treatments and cures for rare disease.
Mark didn’t start out in the rare disease world.
In fact, he’s retired from a 32-year police officer career where he was the police chief in Carrollton, Texas. In this episode, we really explore how Mark dealt with a pivotal moment in not only his life, but also his wife’s and son’s lives - that is, when Ryan was diagnosed with Mucopolysaccharidosis type 1, also known as MPS 1 - a rare disease with no treatment at the time.
Jeanne, Ryan, and Mark Dant on treatment trial day.
We hardly talk about the actual disease, but focus on the emotions Mark and his wife have been through, including sadness, grief, terror, hope, and even happiness - from the moment Ryan was diagnosed in the early 90s to today. Those emotions propelled Mark forward to find funding and a scientist - Dr. Emil Kakkis - who could and did create the treatment Ryan Dant is on today, along with so many others with MPS.
This not only took courage and willpower, but emotional growth to transition from excelling at law enforcement to learning about science and the non-profit world from the ground up when libraries and books were the the primary research methods.
Ryan with Dr. Emil Kakkis during a treatment his parents funded and Dr. Kakkis created.
Before we dive into today’s episode, it’s best if you know the complete backstory for context. So, during the interview, I invite you to watch The Ryan Dant Story on 60 Minutes with Mark. It’s about 15 minutes long and you can find the link to it below in the links section.
Here at Human Amplified, listening to Mark look back over his memories was an honor - an emotional ride where I related as being a parent. Being able to see myself there with him and Jeanne lying on the floor next to Ryan’s bed, listening to him breathe - in grief, and then taking action in hope. So many of us can empathize with that.
This episode will bring you to tears more than once - tears of empathy in knowing how hard grief is and how having a child is like wearing your heart outside of your chest, and then tears of joy when you hear of the power held by a group of people on a mission to change the future.
Get ready to hear about an amazing chain of events that will blow your mind and inspire you to do what others say can’t be done.
Highlights
Getting to know Mark
What it’s like to think about the fact that Mark’s son is the longest treated person for MSP 1 (Mucopolysaccharidosis 1)
“The golden age of rare disease treatments”
Recalling the moments leading up to and when doctors told the Dants that Ryan wouldn’t live past the age of 10 or 12
The first time a doctor noticed something was different
The moment of accurate diagnosis
What is an “orphan disease”
The implications of a genetic disorder on the future of having children
The memory of what Ryan was doing when the diagnosis came
Mark’s proudest moments with his son, Ryan - the strength and courage he exhibits during surgeries and going to school
Having a level of security for tomorrow based on knowing we can change our futures, even despite the present MSP 1 differences
Physical differences
Weekly IV infusions
Quarterly spinal taps
Ryan taking charge of his own health
The emotions that come up with learning your life will forever change
How Mark’s life change from being a police officer and coming home to a wife and son with terminal illness
Starting a non-profit with a bake sale
The nature of asking for and receiving help
Helping the rare disease community as a whole
Personal focus changing from wanting to excel at being a chief of police to learning about science and non-profits
The complexities of asking for help and whether or not another person can or will
How the massive change for Mark that we’re looking at was a slow, arduous process and why
The first year was when Mark, his wife Jeanne, and their son Ryan grew closer together because “it was us against the world,” Mark says
How to make a mental shift during the change and what Mark’s mindset shift was
Even though Mark is years into his journey, how the emotions come up today, even after the initial mindset shift
How to change your life to accomplish changing your future
progress involves failures
the most important thing is to not give up
what we do today will bring us hope tomorrow
Find others who will help and work together
Grief is vitally important
Moving beyond the grief to let it drive your action is also important
How to push through grief
The role of hope in making progress, even in grief
Mark remembering looking at $342 they raised during their first fund raising event - a bake sale, and how it gave hope
What the Dant’s did with their first funds and how it led to the next fundraising events and meeting more people
How Mark found the scientist and asked him to create a treatment for MPS 1 when there wasn’t one
Mark’s mission today is helping other families understand that their voices can empower others to help bring treatment to the untreatable
Mark says there are over 7,000 rare diseases, but only 5 % of them have a treatment.
There are those of us around who want to walk with you, who want to put their hand down and help you up, to connect our voices…to find that treatment. To empower the scientists to focus on that family. It’s their work that will bring that treatment, they need help as well - it’s the connection of our voices.
Mark talks to families today and provides hope and helps them
Mark talks his son’s engagement and wedding planning - something that initially hurt too much to think about and seemed impossible
Since Ryan’s treatment was developed for MPS 1, there are now treatments for MPS 2, 4, 6, 7, trials going on for MPS 3. There are 12 types of MPS. Mark’s organizations are looking for unique science opportunities.
Jeanne, Ryan, Dr. Kakkis, and Mark at Ryan’s graduation.
Mark and Ryan Dant speaking at a genetic conference.
About Mark Dant
Mark is a parent, a husband, and is a retired from a 32-year police officer career in Carrolton, Texas, where he was the police chief. He and his wife now live in Louisville, KY where they grew up and are passionate about their son. They’re currently anticipating their son’s wedding - an event they didn’t dare let themselves dream about in his younger years. He and his wife Jeanne led the funding for the first MPS enzyme replacement therapy, created with Dr. Emil Kakkis, through the Ryan Foundation where Mark is currently the volunteer executive director.
The Ryan Foundation continues to fund science for rare disorders. Mark is also the Board Chair of the EveryLife Foundation for Rare Diseases, a non-profit based in Washington DC that helps move forward science-based public policy.
In 2009, Mark and his family got Congress to pass the Ryan Dant Health Care Opportunity Act, H.R. 1441-111.
The Dants, present day.
Links
Ways you can help and be helped:
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