Ehlers-Danlos Awareness Fundraiser

Zebra Strong for The Ehlers-Danlos Society

This year we are running 100 miles at the Florida Keys Ultra 100 Miler. We are raising awareness and funds for The Ehlers-Danlos Society. Redemption Runner Alyssa’s 20 year old daughter Marissa was recently diagnosed with EDS and many of its comorbidities.The Ehlers-Danlos syndromes (EDS) are a group of 14 heritable connective tissue disorders that produce a spectrum of complex problems across multiple systems of the body. Hallmark symptoms across all types are hypermobile joints, skin hyperextensibility, & tissue fragility. Alyssa’s daughter has these symptoms as well as POTS, MCAS, chronic joint and back pain, constant headaches, kidney issues, weakened immune system, Pectus Excavatum, Neuropathy, Raynaud’s, joint subluxations and Lymes Disease just to name a few. She has been undergoing more tests and treatments than most people have done in a lifetime at such a young age. Each case is unique and severity may range dramatically, even within families. Although she has been going through so much in 2 years, she was able to complete college during this time. She graduated as a PTA inspired to help those like her. A true warrior! Marissa and her family have met many people along her journey just like her and are grateful to them for sharing their stories and resources. Many have faced the same struggles. So many doctor’s aren’t even aware of the rare disease and the domino effect it plays on the patient and the family. They have been lucky enough to find a few knowledgeable practitioners along their journey but it hasn’t been easy and has been expensive. They had to seek doctors out of network and sometimes took the less conventional path. Finding the right doctors and being an advocate has been Alyssa’s role for her daughter besides being her mom. She is honored to raise awareness running for her and the Ehlers-Danlos Society this year along with her team.

The Ehlers-Danlos Society is a global community dedicated to saving & improving the lives of those affected by the Ehlers-Danlos syndromes, hypermobility spectrum disorders, & related conditions. Our goal is world-wide awareness and better quality of life for all who suffer from these conditions, regardless of geography. Often times patients don’t “look”sick and hide it well. Unfortunately, it can be a debilitating disease.

Please support us in honor of Marissa and together we will overcome! Together, even a small donation amount can make a huge difference!

Thank you for supporting our team and our efforts to raise awareness for this important organization! Funds go directly to the Ehlers-Danlos Society to help patients in various ways. To learn more visit www.ehlers-danlos.com

Redemption Racers

Alyssa, Rachel, Lucka, Tara and Erik

Zebra Strong! 💪🏻