Archive for the ‘advocate’ Category
Posted on July 19, 2022
Archer Young For our August newsletter, the Chronic Pain Partners media team interviewed a group of people to highlight the diversity of our community and emphasize the challenges that arise when a person belongs to more than one minority. In this interview, writer Beth Miller speaks with Archer Young, a young trans man with EDS […]
Posted on July 19, 2022
For our August newsletter, the Chronic Pain Partners media team interviewed a group of people to highlight the diversity of our community and emphasize the challenges that arise when a person belongs to more than one minority. In this interview, writer Beth Miller speaks with Cassandra Campbell, a coach, author and EDS advocate. Campbell shares […]
Posted on June 23, 2022
For our July newsletter, the Chronic Pain Partner media team is excited to introduce the EDS community to the new middle-grade* fiction book “Fight + Flight,” which features a character with EDS! Journalist Karina Sturm had the pleasure to talk to author Jules Machias about their life with Ehlers-Danlos syndrome, their career as a writer, […]
Posted on May 12, 2021
CLICK HERE for the complete article in Ability Magazine Twenty-five million people in the US are affected by rare diseases – many of them are genetic and life-limiting. One of these conditions is Ehlers-Danlos syndrome (EDS), an unknown and neglected disorder of the connective tissue that can lead to severe disability. Over the last years, popular […]
Posted on March 30, 2019
John Ferman, Co-founder of the EDS Awareness a.k.a. Chronic Pain Partners 501(c)(3) non-profit program received the 2018 Andrus Excellence in Advocacy award at the AARP Ohio Volunteer Summit DInner in Columbus Ohio on October 29, 2018. John has been a full time volunteer since he retired in 2013 and has: Helped to create over 115 local […]
Posted on April 11, 2018
For the past few years, CSF has stormed Capitol Hill with you to make a difference for people living with Chiari malformation, syringomyelia, Ehlers-Danlos syndrome and many other related disorders… and it seems like Congress is really listening. I n February 2015, Congress voted to increase the NIH budget by $31.3 billion to support more biomedical research. In 2016, […]
Posted on April 10, 2018
We were excited to attend Mandy Harvey’s performance in Warren, Ohio She was interviewed and described her struggles with Ehlers-Danlos Syndromes. Click here for a link to the recording of her performance. She was introduced around the 18 minute time mark. Click here for more about Mandy Harvey
Posted on March 20, 2018
Tiffany wakes up exhausted with her Ehlers-Danlos Syndrome issues. Life with Ehlers Danlos: Surviving Exhaustion While Still “Adulting” By Tiffany Early I’m tired. That’s not exactly a news flash. I’m forever and always tired. One thing that I have in common with the majority of the chronic illness and rare disease community is my chronic […]
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