Amanda Marie

Patient Leader

I understand firsthand the challenges that life with Dysautonomia, Connective Tissue Disorders, Chiari Malformation and MCAD can bring from the perspective of the patient, mother, caregiver and nurse. I have combined my professional experience, personal knowledge and passion for helping others struggling with complex medical conditions to create a global patient community focused on patient empowerment. As the Founder of the Dysautonomia Support Network I am able to help effect change. DSN, a 501 (c) 3 raises awareness and helps others living with chronic illness by offering community, hope, education, resources and support 24/7 online with the help of our amazing DSN patient volunteers.


Johnston, RI


Advocating For Another Best in Show: Facebook

Amanda Aikulola started out with one Facebook group and in approximately 5 years have grown that to 52 State chapters, a main Divas & Dudes group, 6 lifestyle clubs and caregiver club. Amanda was asked as the President to be on the Facebook Summit this year. Her efforts have reached so many people battling Dysautonomia/POTS/EDS and their comorbidit  — Cathy

Amanda has been an advocate for everyone who is battling an invisible disease like Dysautonomia/POTS/EDS and there comorbidities. She has been a huge voice in the community on Facebook, Instagram and the Dysautonomia Support Network website and in person. She has given people the tools to empower them and advocates for all of us everyday!  — Cathy

Amanda Marie

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