DSN Board of Directors

President - Amanda Aikulola

Founder of Dysautonomia Support Network

Peri-Operative Nurse & Entrepreneur 

Amanda founded DSN to empower patients and families navigating life with autonomic nervous system and connective tissue disorders. With over 20 years of nursing and management experience and business background, she founded the Dysautonomia Support Network after being diagnosed with Chiari Malformation, SFN, and Dysautonomia after a head injury in 2012. As a patient advocate, she aspires to improve the patient experience and increase access to care for those living with rare and complex chronic illness. 

Director - Jon Rodis

National Disability Specialist,  Patient Advocacy Champion, & Direct Research Activator 

 

Jonathan Rodis, B.S. in Management at Northeastern University, M.B.A. in Executive Management at Suffolk University. Jon had over 20 years of experience in business management/consulting with 8+ years in senior management positions.  Jon has been involved with several Marfan and related disorder awareness, support, and research initiatives and currently serves as the President of the Massachusetts Chapter of the Marfan Foundation and Chair of the Chapter’s ‘Physician Awareness Committee’ on Marfan Syndrome and Related Disorders. Jon also founded and co-heads the Ehlers-Danlos New England/Massachusetts Support Group and it's most recent initiative, the Ehlers-Danlos Physician Awareness Committee. Jon has dedicated his life to spreading the word on Marfan's, Ehlers-Danlos, Loeys-Dietz and many other related connective tissue disorders doing whatever he can to improve the lives of those who are affected.

Director - Joanna Behm

MS, OTR/L Academic Fieldwork Coordinator, and Lecturer at Messiah College

Joanna lives in York, PA with her husband. She teaches part-time and is working PRN at Encompass Health, an inpatient rehab hospital. She previously worked as Professor of Occupational Therapy at Central Penn College.

 

She always felt "sick" as a child but around puberty, the symptoms got a lot worse and included pain, fainting, GI issues, and bad headaches. After 8 long years, she finally got diagnosed with Hyperadrenergic POTS, Mast Cell Activation Syndrome, and Ehlers-Danlos Syndrome. With the right medications and lifestyle adaptations. She enjoys helping to educate others and providing support to the newly diagnosed. 

Director - Patricia Meegan

DPT, L, ATC & Clinical Director at Healy Physical Therapy

 

Patricia teaches and specializes in treating patients with connective tissue disorders, Chiari malformation, tethered cord, and dysautonomia. As a manual physical therapist, she focuses on correcting alignment and imbalance with gentle maneuvers and techniques that accommodate for connective tissue issues. Her skillful techniques and ability to assess her uniques patient population often enhances strengthening and maximizes the bodies natural ability to heal. 

Director - Kevin A. McGrail

For his day job, Kevin is the Director of Business Growth at InfraShield.com supporting cyber-physical security to assess, defend, recover and restore high-value, high-target systems.

 

In his volunteer work, Kevin helps at a number of organizations including Apache.org, KofC.org, ICISI.org & POAC-NoVA.org.  He also speaks & writes on security and privacy topics, advises SecurityUniversity.edu & Virtru.com & is a Google G Suite Expert.

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