“Knowledge Is Power”: Mother & Daughter Raise VEDS Awareness, Offer Support Together
For Bella Marin and her mom, Frances, Bella's VEDS journey is a road traveled...
Blog Category: Quality of Life
Why the “V” Matters to Me: Living with VEDS – Vascular Ehlers-Danlos syndrome
"Our experiences matter, our futures matter, and our lives matter..." VEDS Movement...
Diagnosed with Stickler Syndrome 18 Years Ago, Marie Law, 63, says: “You Can Live a Full Life.”
Marie Law with her son, David. He is the only one of her five children who has Stickler...
Camp Victory 2026: Where Summer Fun Builds Lasting Connections
There are subtle changes at Camp Victory for Kids’ two five-night summer camp sessions each...
Meet Stephanie: Nurse, Mom, and Help & Resource Center Advocate
Thrive Connectors partner with community members every day to help more people Know. Connect....
How a Marfan Foundation Conference Led to a Cross-Country Forever Friendship: Jennie & Danielle’s Story
Jennie Aucoin traveled to the Marfan Foundation Conference in Atlanta in July of...
After Years of Medical Mysteries, Genetic Test Turns Up Marfan Syndrome – and a Life-Changing Surprise
Summer McKesson's compelling story recently put Marfan in the news with multiple national...
Have a question? We can help.
Contact our Help & Resource Center by
submitting a question via the link below.
