Support group member "Advocacy"

Amanda Aikulola

Location: Johnston, RI

DSN:
DSN website: https://www.dysautonomiasupport.org/
DSN Facebook Page: https://www.facebook.com/DysautonomiaSupportNetwork/
DSN Facebook Support Groups: https://www.facebook.com/pg/DysautonomiaSupportNetwork/groups/?ref=page_internal
DSN Inspire Support Group: https://www.inspire.com/groups/dysautonomia-support-network/

Advocacy Resources
NORD: https://rarediseases.org/for-patients-and-families/take-action/advocate/
Every Life Foundation: https://everylifefoundation.org/
Global Genes: https://globalgenes.org/i-am-a-rare-advocate/

Amanda has combined her professional and personal experience as an advocate and
proven leader.
Her background as a patient, caregiver, nurse, non-profit leader, social media influencer
and business consultant has allowed her to develop unique insight that drives her to quest to improve
the patient experience.
She understands firsthand the challenges that life with connective tissue disorders and neurologic
conditions bring,
Her highly collaborative style and ability to relate to many audiences allow her to
advise, educate and effect change while unifying and amplifying the patient voice globally as the founder
and President of the Dysautonomia Support Network.
Amanda is also the co-creator of the Neuro Connect Alliance, a member of the CSF Chiari Consensus Steering Committee, a Facebook Power Admin
Mentor and was recognized nationally by Facebook for her first support group Dysautonomia Divas,
Dudes & Zebras in 2016 at the Facebook Community Summit in Chicago Illinois.
She enjoys public speaking and sharing her experiences in hopes to inspire others to pursue their passions despite
limitations. In her free time, she enjoys time with her family, traveling, learning and exploring.