2019 Neuro Connect Summit – Physical Therapy in Ehlers-Danlos Syndrome

Video Poster
MAY 4-6, 2019

The 2019 NCSummit was made possible by the 2019 Neuro Connect Alliance partners: Bobby Jones CSF, Dysautonomia Support Network and The Ehlers-Danlos Society. This weekend full of education, awareness and advocacy included educational lectures and workshops. The weekend ended with a march to Capitol Hill. Patients and family members had meetings with their representatives to fight for issues that matter most to those with Chiari, dysautonomia, EDS, syringomyelia and related disorders. 

Dr. Patricia Meegan, PT at Healy Physical Therapy, delivers an outstanding presentation on what to expect from physical therapy. Patients with Chiari malformation, Ehlers-Danlos syndrome (EDS) and other neurological and connective tissue disorders often have to advocate on their own behalf for PT.

Discussing your care plan with your physical therapist, neurosurgeon, or other professionals on your care team is critical to ensuring a successful treatment. Is something not working for you? Talk to your therapist! It is not uncommon to need to re-evaluate therapy goals with your PT.

Watch Dr. Meegan describe how you can identify these moments, and how to find and choose the best PT for your care. She even gives tips on how to advocate for yourself and talk to your health insurance about covering your PT. It's worth a watch for anyone who has tried PT with no success, or who is thinking about trying it before or after neurosurgery.

This presentation was given at the 2019 Neuro Connect Summit held in Rockville, Maryland as part of a full weekend of education, awareness and advocacy. (2019)

Thank you to the 2019 Neuro Connect Alliance partners for making this education and advocacy weekend a reality: Bobby Jones Chiari & Syringomyelia Foundation, Dysautonomia Support Network and the Ehlers-Danlos Society! Learn more about the 2019 Neuro Connect Summit at

Revised: 9/2019