Clinical Trials for the First Medication for CVS
Reminder: Clinical Trials for a medication/device that could be the first ever medication specifically designated for treating CVS. New sites have been added. There may be help with travel if there is not a site near you, contact the site nearest you to find out if you qualify.

Check out the new website with lots of information about the study and study sites.
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.
Thank you to everyone who joined us for the July Virtual Expert Presentation: Every Hour Counts: Streamlining Care for CVS Attacks
Dr. Zeyad Abdulkader spoke about his research study on treating CVS in the emergency room and how the treatment time frame can influence whether someone is admitted to the hospital or sent home. Dr. Abdulkader is the inaugural B Li young professional award winner and is interested in both treating and researching CVS. The recording is now available on our YouTube channel.
Watch your email for the announcement of our next Virtual Expert Presentation!
Does sending your CVSer back to school seem overwhelming? Have you ever wondered about having an IEP or 504 plan put in place? Coming soon in our next printed newsletter is an article that will explain both an IEP and 504 as well as tips and tricks for sending a kid with CVS to school. The article also talks about finding the right option for your child if traditional school is a struggle. Here are a few tips from the article:

  •  Ask what others are doing about school in support groups, at school, at the hospital etc.
  • Consult Childlife at your local hospital for schooling options that are working for other kids they help
  • When developing or modifying a 504 or IEP, consider the challenges that your student has. Free to leave to go to nurse or bathroom. Ability to move away from suspected sick individuals. Extra time for testing, etc.

The newsletter will be out shortly and is sent to all CVSA members. If you are not a member, read the benefits below and click the button to Join Today and receive this great resource soon!

Join CVSA and...

  • Pay it forward to allow the office to help those at the beginning of their CVS journey
  • Be the 1st to know about clinical trials and other research being done
  • Enjoy discounts on in-person events such as the CVSA conference
  • Register for Virtual Expert Presentations 1st
  • Receive the printed Code V newsletter sent to members only 3 times/year
Don't delay! This is the last month to participate in this study!
Want to help raise CVS awareness year round?
Check out all the options at the CVSA store!

Join CVSA on Monday, August 9th, at 6 PM PST, for the monthly support call on our new Zoom platform! Have questions? Newly diagnosed? The support call is the place to get your answers.
Thank you to all that 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 more than $200 please send a screenshot to the CVSA office to receive your complimentary 1 year membership, please email
Any fundraiser for CVSA, that raises at least $200, will receive a complimentary 1 year membership. Check out our fundraising page for ideas.