Thank You from CVSA
Thanks to everyone's support, CVSA was able to provide the following and much more in 2021:

  • One on one support for people contacting the CVSA office.
  • Connect people to doctors that know about and treat CVS.
  • Provide the most accurate information on CVS, by partnering with our team of medical advisors.
  • Host monthly support calls via zoom to connect patients with others.
  • Advocate for and fund CVS research towards a cure.
  • CVSA attended the largest Emergency Medical Conference to provide information about CVS to emergency medical professionals to help change the treatment in the Emergency Rooms.
  • Encourage young physicians to research and treat CVS by providing the B Li Young Investigator award every year in partnership with NASPGHAN. Recently Awarded at the NASPHGAN 2021 meeting in December to Katja Kovacic.
  • Host free Virtual Expert Presentations; recorded presentations are posted to the CVSA YouTube Channel.
  • Fundraising for projects, like the updating of the Pediatric Clinical Treatment Guidelines.

In this New Year, CVSA is continuing with most of the programs listed above and much more! Here are some of the highlights expected in 2022:

  • The updating and publication of the Pediatric Guidelines is anticipated to finish in 2022.
  • CVSA is already contracted to attend ACEP in 2022, the largest emergency medical professionals conference to keep addressing disparities in care and treatment of CVS patients in the ER.
  • In April 2022, CVSA will be attending AAN, or the American Academy of Neurology Conference, as an exhibitor to provide CVS awareness and information to those in the field of neurology.
Help make a difference!
You're participation in the clinical trials for the first ever medication developed to treat CVS can impact the future of CVS treatment.
If you would like to participate in this study, please check the clinical trials website
periodically, as additional clinical trial sites will be added as they are ready to start enrolling patients.

*Please note: All requests for more information or questions regarding the trials need to be directed to the trial website listed above.
Save the Date

March 5th International Awareness Day
How You Can Participate:

  • Wear blue: a blue ribbon, shirt, etc.
  • Wear a CVS Awareness T-shirt or mask
  • Dye your hair blue
  • Host a local meet-up or fundraiser with social distancing precautions
  • Take pamphlets or brochures to doctors, and ER waiting rooms, classes, or medical groups
  • Volunteer for groups that are raising awareness and education for CVS
  • Donate to groups raising awareness and education for CVS

In 2021, our organization earned a Silver Seal of Transparency!
This allows everyone to learn more about our programs and find us on social media more readily.
Check out our updated Nonprofit Profile on Candid:
Join CVSA and...

  • Enjoy discounts on in-person events, such as the CVSA conference
  • Be the 1st to know about clinical trials and other research being done
  • Register for Virtual Expert Presentations 1st
  • Receive the printed Code V newsletter sent to members 3 times/year
  • Pay it forward to allow the office to help those at the beginning of their CVS journey
Do you want to raise awareness of CVS this International Awareness Day?

Order early to get your shirt before March 5th.

Join CVSA on Monday, January 10th, at 6 PM PST, for the monthly support call on our new Zoom platform! Have questions?
Newly diagnosed?
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The support call is the place to be.
Thank you to all of whom have set up fundraisers on Facebook with Facebook Donations!

Please note that due to Facebook's algorithms and privacy restrictions, CVSA is unable to determine the dates that fundraisers take place.
If your CVSA fundraiser raised $200 or more, please send a screenshot to the CVSA office to receive your complimentary 1 year membership, please email

Check out our fundraising page for ideas.