Amanda Aikulola LPN

Patient Leader

Amanda is a public speaker, rare disease advocate, personal coach, and consultant for pharmaceutical companies, businesses, and non-profit organizations. She is also a nurse with over thirty years of combined experience in the health care industry, non-profit, retail and business management. Recognized nationally by Facebook in 2016 as one of the top 100 Facebook Group admins in the United States she continues to work with Facebook as a Power Admin Mentor and Beta Tester in Facebook Groups. As an innovative media-fluent consultant and multi-media strategist, Amanda specializes in strategic planning, online advocacy, community building, and enjoys teaching advocates, entrepreneurs, and leaders to create a customized media plans and online communities that enrich their brand. Amanda is passionate about empowering others and inspiring adaptive entrepreneurship as a speaker, consultant, and coach, she believes we all have a purpose, and the power to change the world. CEO of PurposeWorks Consulting & Coaching, Founder and Board Member Dysautonomia Support Network, Board Member The Seenajah Project, Dysautonomia International Patient Advisory Board 2013, Bobby Jones CSF Chiari Physician Steering Committee, DSN Backpack Health Steering Committee Member, 2019 Judge for WEGO Health Awards and the creator of the DSN Patients Choice Awards.


Johnston, RI


Advocating For Another Best in Show: Facebook Lifetime Achievement Healthcare Collaborator: Patient

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

I once had a doctor tell me, "This is one of those things that when you see it you know's not complicated." I could easily say the same for Amanda and this award, Her advocacy for dysautonomia and related disorders began long before her creation of Dysautonomia Support Network. She has worked tirelessly for years changing lives.  — Michelle

Amanda Aikulola LPN

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