EDS Ohio Regional Group Connections

04/27/2026

Group member emergency in North East Ohio: needed employment law attorney for a veteran with C-PTSD, EDS patient, etc. If you have worked with someone you liked that does deferral of payments/payment on settlement would be helpful!

This person is/has been in touch with:
-the Ohio Civil Rights Commission
-Opportunities for Ohioans with Disabilities
-the VA
-Disability rights Ohio

04/15/2026

I've been impressed with both the quality and accuracy of content.

https://www.facebook.com/share/1bD6KGFCzn/

Social Security Disability & Long Term Disability
⚔️ Disability Warriors
📍 Serving Clients Nationwide
🤓Educational content, not legal advise
🆓 No Fee Unless We Win
Free Consult: https://linerlegalsurvey.com/
🌐 Visit www.linerlegal.com

03/31/2026

Deeply saddened to hear about the passing of Professor Rodney Grahame, CBE, MD. He was groundbreaking innovator and his work helped thousands within the EDS and Chiari communities. He truly cared about managing our pain and realized how deeply neglected EDS patients have been by the medical community. I had the pleasure of speaking with Dr. Grahame on multiple occasions. I will forever remember his gentle, compassionate nature, his soft spoken reassurances of understanding, and his deep devotion making lives better for our community. Thank you, Professor Rodney Grahame, CBE, MD. for the devotion and for helping bring light to Ehlers Danlos Syndromes. You will be both missed and remembered.

Professor Rodney Grahame CBE, MD, FRCP, FACP, FRSA 1932-2026

03/24/2026

Is there interest in spring or summer social events?

05/31/2025

As mentioned before, I will be keeping this page up to connect people with the EDS Ohio regional group pages. Paper work was officially filed today to permanently close the non-profit, which I found both fitting and bittersweet. I will not be changing the group names to help folks to find the groups. Please remember to answer any/all group questions for membership or the request will be declined.

If you are interested in volunteering to moderate your regional group or the all Ohio group, please message me!! Experience moderating preferred, but not necessary. Responsibilities include approving new members, physician and other provider recommendations, moderating comments and alerting me of any conflicts, emergencies, or issues one doesn't feel comfortable moderating alone.

-Kassady

EDS Ohio, Inc. - All Ohio
EDS Ohio, Inc. - Youngstown Area
EDS Ohio, Inc. - Cuyahoga Falls Area
EDS Ohio, Inc. - Cincinnati/Dayton Area
EDS Ohio, Inc. - East Cleveland Area
EDS Ohio, Inc. - West Cleveland Area
EDS Ohio, Inc. - Columbus Area
EDS Ohio, Inc. - Toledo Area

05/13/2025

I know folks are probably wondering why there hasn't been anything for EDS Awareness month. It's been weighing on me for some time now and it's time for me to step away from running EDS Ohio, Inc in its current format. I'll be reaching out to the Secretary of State and closing our incorporated status. My board collapsed, due to the passing of my dear friend and guide father, Richard Riemenschneider and things I cannot publicly speak on with Bradley Kelly (other than to say he left the state and is no longer on the board). Therefore, we are no longer in compliance with the state and I accidentally missed a filing (because our treasurer had previously handled filings), which will come with a fee assessed to me personally, as we have always operated with a balance of $0. It's my fault for not checking the email and seeing the notice, so I accept the responsibility there.

I *WILL NOT* shut down the regional support group pages. However, I do ask for volunteers to help moderate, as I'm not able to handle all the physicians, resources and other connections by myself any longer.

I will not host any further Zoom meetings and will likely not do an in person meeting, unless they are social meet ups.

I will continue to post research and information. I'll help connect you with one of our regional groups or the all Ohio group.

I will do my best to assist in any critical situations with school accommodations, in patient advocacy, medical kidnappings and mental health crises.

It's been my greatest honor to positively impact so many lives starting with Medically Me, my interlude with EDS Awareness, and becoming EDS Ohio, Inc. with the help of Strengthening Connections, Inc. and EDS Wisconsin, Inc. Thank you for sharing your stories and being a part of the community.

This isn't goodbye, but is certainly a big change that comes with mixed emotions.

-Kassady
President and Founder
EDS Ohio, Inc.

04/28/2025

This is making its circulation again. Please note: The image on the right is not an accurate image. It's cropped from the image on the left. The image depicts fibrils from a very rare type called Dermatosparaxis Ehlers Danlos Syndrome from an altered ADAMTS-2 gene. Only 15 cases have been recorded.

07/30/2023

https://www.painnewsnetwork.org/stories/2023/4/12/researchers-find-cause-and-possible-treatment-for-hypermobile-ehlers-danlos?fbclid=IwAR2qFxxykXcyCVxpRd8AaXAo-Oa8Ags6TCpgNx2Y2Erawc50WmBzne56yDI

By Crystal Lindell, PNN Columnist Do we finally have a genetic link for hypermobile Ehlers-Danlos syndrome ? Researchers at  Tulane University School of Medicine  think so – and it could even point to an effective treatment that’s already available. A variation of the MTHFR g

05/31/2023

https://www.nih.gov/news-events/nih-research-matters/unexpected-role-nervous-system-anaphylaxis

Researchers found evidence that the nervous system plays a key role in the extreme and sometimes deadly allergic reactions known as anaphylaxis.

05/14/2023

It is with immeasurable sadness that I announce the passing of Richard Riemenschneider. Not only was Richard my dear friend and guide parent, but he was also a fierce advocate for our community, and served as a member on our board.

My continued thoughts of support and comfort are with his wife, Martha, and their daughter, Lindy.

05/02/2023

I had really hoped to have some events planned and going for awareness month, alas I've had one health issue after another since the fall. I'm currently dealing with a bone infection in my jaw, fever, and pain that's only being treated with ice, antibiotics, steroids and Tylenol. I have a second oral surgery scheduled next Monday that will hopefully get me on the mend. Take care!

-Kassady

04/17/2023

I want to hear your stories related to emergency room care, as an EDS patient... good care, bad care, lack of care... What was done correctly? What was done horribly wrong? What do you wish your doctor/nurses knew about EDS and its comorbidities? How was your pain addressed both in the hospital setting and at discharge? I appreciate any and all efforts taken to respond, as I know it requires spoons and brings up medical PTSD.

I hope to address these issues head on in the coming year or two in developing a presentation that I will give to any and all medical professionals who will listen. It's time for our voices to be heard!

Thank you,
Kassady