I am an entrepreneur, nurse, and caregiver who also lives with chronic and rare disorders. I have participated in drug trials as well as recruited patients as a contract nurse recruiter for a phase three drug trial. I speak nationally and advocate for caregivers and patients in the rare and chronic illness community. My business, marketing and nursing administration background has allowed me to use my passion to consult for non-profits, small businesses, and nursing facilities. I also enjoy speaking to advocates, patients and caregivers and sharing my experiences and knowledge in hopes to inspire others to discover their purpose or pursue their passions despite their physical or other disabling limitations. I currently serve as the President of Dysautonomia Support Network, Dysautonomia International Patient Advisory Board 2013, Bobby Jones CSF Chiari Physician Steering Committee 2018, 2019. I have also been a panelist on pharmaceutical research and non-profit technology and social media use. I speak at various patient conferences on topics such as advocacy in support groups and preparing for peri-operative success. 2019 Judge for WEGO Health Awards and the creator of the DSN Patients Choice Awards. My over 20 years of nursing experience in Nursing Administration, Peri-operative, Endoscopy, Rehab, Acute & Long Term Care and use of technology allow me to maximize my advocacy work and provide resources and support globally. I aspire to meet patients and providers where they are at and create ways to empower others to advocate despite their disabilities. I was recognized nationally by Facebook for the first of 70 support groups I have created in 2016 at the Facebook Community Summit in Chicago Illinois. I continue as a Power Admin Mentor with Facebook. My highly collaborative style and diverse background allow me to connect, inspire others to engage and affect change while unifying and amplifying the patient voice effectively on a global scale.
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 it...it'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
I’m a Patient Leader