Today we hear an incredible story from a woman who never stops living! At 35 years old, 25 years longer than doctors predicted she would live, Ashley Kurpiel makes every single day count, motivating others and shining her light. Diagnosed with Fibrodysplasia Ossificans Progressiva, the Stone Man Syndrome, at the age of 3, Ashley has made it her mission in life to inspire others in any way she can.
Whether she’s being a spokesperson for IFOPA, International Fibrodysplasia Ossificans Progressiva Association; volunteering at Never Say Never, a pirate camp for children with disabilities; being a Motivational Coach for NubAbility Athletics Foundation, a sports camp for kids with limb-differences in main-streamed organized sports; or owning the title Super Star Director of Motivation and Athlete Management for A.S.K., Adaptive Skate Kollective and raising awareness for the adaptive community with skateboarding training, coaching, competitions and special events; Ashley is positively impacting the lives of so many people around the world!
Listen in as Ashley, an ‘Angel on Assignment,’ shares her inspiring story with us of making life count each and every day, despite living with FOP!
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““I have Fibrodysplasia Ossificans Progressiva, one of the rarest, most disabling genetic conditions known to medicine. It causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another. Today there are less than 800 known cases worldwide and I’m the only amputee with FOP.” – Ashley Kurpiel
- Ashley’s difficult medical ordeals in childhood
- Diagnosis of Fibrodysplasia Ossificans Progressiva
- The importance & support of family
“I can’t complain about this condition. I see little kids that are far worse off than me and they don’t even complain about it, The heart these people have with this condition is like none I’ve ever seen in my life.” – Ashley Kurpiel
- Advances in research on FOP
- How Ashley describes her condition to others
- How Ashley (and YOU) can support the adaptive community
- Ashley’s advice for day-to-day life
- International FOP Association: http://www.ifopa.org/
- ASK (Adaptive Skate Kollective): http://adaptiveskate.org/
- NubAbility Athletics Foundation: http://nubability.org/
- Never Say Never: http://www.neversayneverfoundation.org/about-us/
- The Children’s Wish Foundation: http://childrenswish.org/
Connect with Ashley Kurpiel:
“This life I have, it would not be this way without everything I’ve been through.” – Ashley Kurpiel
“Treat everyone like you want to be treated. Love one another. There’s not enough love in the world.” – Ashley Kurpiel