The DysautoKNOWmia Movement
The DysautoKNOWmia Movement

Transform silence into science for Dysautonomia and POTS

Join the DysautoKNOWmia Movement and turn NO into KNOWledge

Join the DysautoKNOWmia Movement and turn NO into KNOWledgeJoin the DysautoKNOWmia Movement and turn NO into KNOWledgeJoin the DysautoKNOWmia Movement and turn NO into KNOWledge
Join the Movement

Transform silence into science for Dysautonomia and POTS

Join the DysautoKNOWmia Movement and turn NO into KNOWledge

Join the DysautoKNOWmia Movement and turn NO into KNOWledgeJoin the DysautoKNOWmia Movement and turn NO into KNOWledgeJoin the DysautoKNOWmia Movement and turn NO into KNOWledge
Join the Movement

Our Mission

The DysautoKNOWmia Movement is a teen-led effort to transform the uncertainty and frustration of living with POTS and other forms of Dysautonomia into knowledge, research, and hope. By empowering others to share stories, raise awareness, and support scientific discovery, we aim to shorten diagnostic journeys, improve care, and fuel meaningful change. We believe every voice helps - and that together, we can turn "no" into "knowledge". 

Transforming No to KNOW

At 14, Sophia was diagnosed with POTS after months of unexplained symptoms and frustration. Like so many others, she faced more questions than answers - and realized how many patients feel dismissed or misunderstood. The DysautoKNOWmia Movement was born from her determination to turn personal struggle into shared knowledge, research, and real change. 

Sophia's Story

Life with POTS is a paradox - one moment you're on the floor, unable to stand, and the next, you're breaking records, acing tests, or achieving something extraordinary. While living a life with POTS is a reality for me, I also refuse to let it define my limits. After a visit to the ER and passing out over the finish line at a track meet in the same month, I was determined to make a difference for others. So many teens are getting POTS and have to go through the same series of unknowns, mis-diagnoses, and lack of understanding from others around them. My goal by launching this movement is to empower you to share your story, educate yourself and others around you, and help improve the journey for all the patients who need help. 

About The DysautoKNOWmia Movement

Share Your Story

Share Your Story

Share Your Story

  • Post your story on our site and social media using #DysautoKNOWmia #No2Know
  • Share our website with friends and teachers
  • Ask your school to host an awareness day

Raise Your Voice

Share Your Story

Share Your Story

  • Your voice can shift people’s understanding!
  • Start a support group or club at school
  • Share a 1-pager with teachers and schools on what POTS is, how you can help someone with POTS

Fuel the Change

Share Your Story

Fuel the Change

  • Start a fundraiser for Dysautonomia International by sharing your story and linking with our fundraising efforts
  • Send an email to friends and family with link to Dysautonomia International 

KNOW Me Spotlights

Contact Us

Have a question, want to get involved, or share your ideas?

The DysautoKNOWmia Movement

Chicago, IL

Drop us a line!

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