About Katie O’Bara
Read Katie’s Story
ED for EDS4 was founded in loving memory of Edward J Boyle – Katie O’Bara’s grandfather. He was a huge support to her while she was dealing with her condition! Whether it was company or ride her to many doctors appointment, he was always willing to help.
So we decided to do our first Golf tournament in August 24, 2024 to raise awareness for her condition. When Kate lost her battle with Vascular Ehlers-Danlos Syndrome (vEDS) on September 9, 2024, at the age of 30, we wanted to continue her legacy. Katie was a tireless advocate for vEDS, dedicating her life to raising awareness and helping others facing the same challenges. Her kindness, strength, and determination continue to inspire us. In her honor, we are committed to supporting individuals and families affected by EDS, promoting education, advancing research, and building a strong, compassionate community.
About Katie Lynn O’Bara
Katie Lynn O’Bara, born in Worcester and a lifelong resident of Charlton, MA, was a vibrant, compassionate person known for her selflessness and advocacy for Vascular Ehlers-Danlos Syndrome. She graduated from Shepherd Hill Regional High School in 2013 and later owned and operated Fellowship Cleaning and Organizing in Rhode Island. Katie enjoyed spending time with her family and friends, playing golf and cornhole, and caring for her beloved pets, including her Corgi, Dave, and cats Franklin and Spooky. She had an incredible ability to see the best in people and worked tirelessly to spread awareness of vEDS.
Though Katie left us far too soon, her legacy lives on through EDS4, a non-profit organization dedicated to continuing her mission of supporting those affected by Ehlers-Danlos Syndrome.
Get Involved
Donate
Help us continue Katie’s mission by contributing to EDS4. Your donations support our outreach, education programs, and research initiatives. Every contribution brings us closer to a future where those affected by EDS can live longer, healthier lives.
Volunteer
Be a part of something bigger. Whether you can lend a hand at an event or lead a support group, your time and effort can help make a significant difference in the lives of those affected by EDS.
Become a Member
Join our ED for EDS4 family and gain access to exclusive resources, community events, and advocacy opportunities. Together, we can make life better for those living with EDS, just as Katie would have wanted.