An Example of What She Hoped For: The Life and Legacy of Bella Welch
Bella’s family has honored her with gifts totaling $255,000, establishing a memorial research grant in her name.
News
Essential Care: Mental Health and Life with VEDS
“The mental health burden of living with VEDS is profound,” says Karen MountainJohnson, a licensed clinical mental health counselor who lives with the condition. “I would argue that having mental health support is as vital as having a cardiologist.” Living with Vascular Ehlers-Danlos syndrome (VEDS) brings unique challenges, but having the right support can make a meaningful difference in how…
Small Events—Big Impact
It was the little touches that made the June 20 Well Kirtland Golf Fundraiser for the VEDS Movement so fun—and so meaningful, says Michelle Henderson, whose daughter, Lucy, age 9, lives with VEDS. Approximately 120 guests played 18 holes at the St. Denis Golf Club in Chardon, Ohio. They putted for prizes, entered raffles, snacked on hot dogs, and enjoyed dinner afterward. But one of the…
VEDS Action Day: The “V” in VEDS Matters
Please note: this story discusses and depicts emergency medical experiences. Guest blogger Maia Fleener is living with VEDS and volunteers with the VEDS Movement as an advocate and voice of lived experience. For me, this day is deeply personal. I live every day with Vascular Ehlers-Danlos syndrome (VEDS) – a rare genetic condition that affects the body’s blood vessels,…
Aortic Dissection Survivor Story: From Survivor to Advocate and a Roar for Awareness
Editor’s Note: The following post was written by our Director, Ryan Rodarmer, and was originally featured by The Marfan Foundation to highlight Aortic Dissection Awareness Week. Ryan Rodarmer, Director of The VEDS Movement I thought I had everything under control, but my body had other ideas—a fact I learned on the morning of April 9, 2019. For nearly fifteen…
VEDS Treatment Research: Recent Advances in Celiprolol and Irbesartan Studies
Introduction For those living with Vascular Ehlers-Danlos Syndrome (VEDS) or supporting loved ones with this condition, staying updated on research developments can provide valuable information. New studies continue to emerge that help us better understand how medications might reduce the risk of serious complications in VEDS. Here, we share summaries of two recent research articles that provide important insights…
Vascular Ehlers-Danlos Syndrome Dutch Study: Natural History Insights from 142 Patients
A Dutch VEDS natural history was recently published. The article provides a comprehensive look at the natural history of Vascular Ehlers-Danlos syndrome (VEDS) in a Dutch cohort, involving 142 patients. The study found that males, and those with specific gene mutations or distinctive physical characteristics, are at a higher risk of experiencing serious complications at an earlier age. Major…
Join Our Exclusive Q&A with Dr. Hal Dietz on VEDS Research
We are excited to announce a special event for our community and healthcare professionals with an interest in Vascular Ehlers-Danlos syndrome (VEDS). Dr. Hal Dietz, a leading figure in VEDS research, will be answering your questions in a live virtual Q&A session.
Finding Support at the Holidays & Beyond
As we navigate through the holiday season, a time of joy and togetherness, we’re also reminded of the challenges and hardships that can accompany these days. It’s a period that can bring a mix of emotions, especially for those in our VEDS community facing health struggles or remembering loved ones. Acknowledging Our Community’s Resilience This season, we take a…
Research & Human Trials Update
As we continue to advance our understanding of Vascular Ehlers-Danlos syndrome (VEDS) and seek effective treatments, it’s crucial to stay updated on the progress of ongoing human trials. Here are the latest developments in two key trials that hold promise for our community: Celiprolol Trial Update: In a significant industry development, Acer Therapeutics was acquired by Florida-based Zevra Therapeutics,…
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