October is Vascular Ehlers-Danlos Syndrome (VEDS) Action Month and you can do your part from anywhere and on social media. In addition to sharing information from our Facebook and Twitter, you can create your own posts and tweets, or a Tik Tok video, to increase awareness. We invite you to join VEDS Action Month by using the hashtag #ChargingForward4VEDS
We have action items planned for each week of the month, although we encourage you to do any of these at any time during the month!
Quick Access Menu:
Before and during the entire month:
Ask Your Local Representative to Proclaim October as VEDS Action Month (US)
Use our template here to send a letter to your local (county, city) representatives in the US, asking them to proclaim October as Vascular Ehlers-Danlos Syndrome Action Month! If you want to get a proclamation of VEDS Action Month for your state, let us know here.
Share Your Successes with Us!
What did you do this month to lead the charge forward for save lives? Tell us on your social media! Don’t forget to use the hashtag #ChargingForward4VEDS and tag us in the post @VEDSMovement!
Ask your Doctor to Organize a Grand Rounds
If your doctor is associated with a teaching hospital or major hospital, ask them if they would consider organizing a Grand Rounds presentation on VEDS for the medical professionals at the hospital. Grand Rounds help doctors and healthcare professionals stay updated in areas which may be outside of their core practice. The VEDS Movement is also happy to be involved in helping organize this presentation with you and your doctor. See an example Grand Rounds presentation here.
Week 1: Celebrate!
Join the Birthday Bash!
Celebrate three years of The VEDS Movement by joining our Birthday Bash on October 6 at 8 pm ET! This virtual event will feature a silent auction of unique items, appearances from a few of our favorite people, and some surprises. Register and view the auction here.
Thank a Doctor Who Has Made a Difference for You
Is there a doctor who has been an integral part of your care team, been supportive, saved your life, or who you’re thankful for? Thank them on social media! Tag us in the post (@VEDSMovement) and use #ChargingForward4VEDS. If the doctor is on social media, tag them in the post too!
Celebrate Those Who Support You
Have family, friends, or a special someone who has been a major support for you? Tell us about them and how they’ve supported you on social media! Be sure to tag us in the post (@VEDSMovement) and use #ChargingForward4VEDS.
Did Your Legislator Proclaim October as VEDS Action Month?
Share your success with us @VEDSMovement on Twitter and Facebook!
Week 2: Raise Awareness of VEDS and Share Your Story
You can share your story on social media! You can share any part of your story you wish! Use the hashtag #ChargingForward4VEDS and consider sharing things like:
- Your diagnosis story
- The hardest thing to explain to others about VEDS
- Your scariest experience with VEDS
- Your hope for the future with VEDS
- Advice you have for someone newly diagnosed (or with a family member newly diagnosed)
The National Organization for Rare Diseases (NORD)
NORD has a share your story platform on their website here, where you can share your story about living with Vascular Ehlers-Danlos Syndrome.
Week 3: Medical Education!
Continuing Medical Education (CME)
Tell your doctor about the CME course for Vascular Ehlers-Danlos Syndrome, developed with The Sullivan Group, which aims to provide an overview of VEDS and associated emergency situations to medical professionals, and the VEDS ECHO CME opportunity through the Ehlers-Danlos Society.
If you are a doctor or medical professional, consider taking the Sullivan Group’s VEDS CME course and the VEDS ECHO, and consider sharing these opportunities with your colleagues or organizing a grand rounds at your hospital.
Share Information with Your First Responders
Our Emergency Preparedness Kit is designed to help you be prepared in an emergency situation and contains a checklist to preparing your kit, as well as a letter for the emergency medicine staff and an emergency wallet card. It also contains an informational guide for EMTs and Paramedics. Consider meeting with your local first responders to give them this information!
Meet with Your Local Emergency Department Director
See if you can make an appointment with your local emergency department director to talk to them about VEDS. You can also give them the information from the Emergency Preparedness Kit. Be sure to let us know who you met and how it went so we can thank them and send them follow-up information! Tell us how it went.
Ask your Doctor to Add Information on VEDS to your Electronic Medical Record
Does your doctor have a highlighted patient coordination care note on your electronic medical record providing instructions for emergency situations? Let your doctor know we have instructions for EPIC here. In other systems, it may be called an “FYI” alert. When you reach out to them, also be sure to ask them to update your chart with the new ICD10 code for VEDS, which is Q79.63.
Week 4: Get Involved
Sign up to volunteer with The VEDS Movement to join the charge forward! There are several different volunteer teams to join, and we have added two new teams – the VEDS Awareness Team and the Grand Rounds Team, in addition to The Marfan Foundation volunteer teams, such as the Community Action Team, for volunteers who want to run local fundraising and awareness events. Pick which one is right for you! Learn more.
Get Your Emergency Preparedness Kit Together
Download the Emergency Preparedness Kit and Emergency Card, available for free on our website, which can help you be prepared in an emergency with VEDS.
Enroll in a Research Study
Enroll in a research study to help further research for Vascular Ehlers-Danlos Syndrome. We have a list of studies actively enrolling here. Note: The PREVEnt trial (enzastaurin) by Aytu BioPharma is not yet enrolling. The VEDS Movement will provide updates on the trial as they are announced, and you can also sign up for updates on this trial at the clinical trial website linked above.
Join a Walk for Victory Near You
Find the next Marfan Foundation Walk for Victory close to you and raise vital funds for VEDS by creating a Team VEDS.
PREVEnt Trial for VEDS: Information You Need to Know
October 27, 2022 7 pm Eastern
Join Aytu BioPharma for a presentation and Q&A session on the trial design and enrollment criteria/process for the upcoming PREVEnt trial (AR101/enzastaurin) for VEDS. This webinar will specifically focus on plans in the US. A second webinar is schedule on November 21 for those in Europe.
Digital Swag for Action Month
VEDS Fast Facts Downloads
Vascular Ehlers-Danlos Syndrome Action Month Facebook Frames
Add a frame to your Facebook profile picture anytime during the month of October! To add a frame to your profile picture:
- Go to www.facebook.com/profilepicframes.
- Search for VEDS Action Month to find the frame you want to use.
- Click Use as Profile Picture to save.
If you have a Facebook profile, make sure you “like” The VEDS Movement page at https://www.facebook.com/VEDSMovement so that our posts appear in your news feed. Comment and share our posts, especially during VEDS Action Month!
Create your own Facebook posts with links to TheVEDSMovement.org to educate your personal networks about VEDS. Use our hashtag #ChargingForward4VEDS in all your posts for easy tracking.
Tell your story, explain why Vascular Ehlers-Danlos Syndrome awareness is important to you, and promote VEDS facts. Encourage your Facebook friends to share your posts to multiply your impact. Post photos and share what you’re doing for VEDS Action Month on our Facebook page.
If you are not on Facebook, now is a good time to join! Create a profile (for free) on facebook.com. Then “friend” people you know (friends, relatives, neighbors) to create your personal network before October begins. Then, when you post about VEDS awareness, you will be sharing information with a large, and growing, group of people.
Sample Facebook posts:
- It’s VEDS Action Month. An estimated 1 in 50,000 people in have VEDS, but many of them don’t know it. Do you know the signs? https://thevedsmovement.org/veds/what-are-the-signs/ #ChargingForward4VEDS
- Are you VEDS Aware? It’s VEDS Action Month. Learn the basic facts. https://thevedsmovement.org/veds/ #ChargingForward4VEDS
- October is VEDS Action Month! Learn what it is at thevedsmovement.org #ChargingForward4VEDS
If you have a Twitter handle, make sure you follow us @VEDSMovement. Watch for our tweets, like them, and retweet them to your followers.
Create your own tweets about Vascular Ehlers-Danlos Syndrome to educate your followers. Use our hashtag #ChargingForward4VEDS in all your tweets for easy tracking. Tell your story, explain why VEDS awareness is important to you, and promote VEDS facts. Encourage your followers to retweet your tweets to multiply your impact.
If you are not on Twitter, now is a good time to join! Create your twitter account (for free) on twitter.com. Then follow people you know and who you want to influence. There’s a good chance that people you follow will then follow you back. That’s the power of Twitter. Then, when you tweet about VEDS awareness, you will be sharing information with a large, and growing, group of people who will, hopefully, retweet your news to their followers.
- October is Vascular Ehlers-Danlos Syndrome Action Month. Learn about VEDS at TheVEDSMovement.org #ChargingForward4VEDS
- Awareness of Vascular Ehlers-Danlos Syndrome is very important to me. Please visit TheVEDSMovement.org to learn more. #ChargingForward4VEDS
- I’m supporting VEDS Action Month because #VEDS is in my family. Find out what it is at TheVEDSMovement.org. #ChargingForward4VEDS
- VEDS Action Month is a good time to learn the signs of #VEDS. Check them out here. https://thevedsmovement.org/veds/what-are-the-signs/ #ChargingForward4VEDS
- Many who have #VEDS don’t know it. Know the signs. https://thevedsmovement.org/veds/what-are-the-signs/ #ChargingForward4VEDS
If you have a TikTok, check out these three example videos created by in_veds_tigator and consider creating your own!