October is Vascular Ehlers-Danlos Syndrome (VEDS) Action Month and you can do your part from the comfort of your own home on social media. In addition to sharing information from our Facebook and Twitter, you can create your own posts and tweets to increase awareness. This year we invite you to join 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!
Action Items
Before and during the entire month:
Ask Your Legislator to Proclaim October as VEDS Action Month
Use our template here to send a letter to your representatives, asking them to proclaim October as Vascular Ehlers-Danlos Syndrome Action Month!
Walk the Wonders with The Marfan Foundation
Walk the Wonders is the Foundation’s first-ever international group challenge. This seven-week event takes our community on a mission to walk together to the Seven Wonders of the World – virtually! Don’t want to walk? No problem! Steps can be counted through any daily activity. Learn more.
Week 1: Share Your Story with Vascular Ehlers-Danlos Syndrome! Here’s How:
The VEDS Movement
You can share your story with The VEDS Movement, through our Share Your Story form here!
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.
Social Media
You can share your story on social media! Consider sharing things like: your diagnosis story, your scariest experience, your best physician experience, or the hardest thing to explain to others about what it is like living Vascular Ehlers-Danlos Syndrome. You can share any part of your story you wish! Use the hashtag #ChargingForward4VEDS
Ask Your Legislator to Proclaim October as VEDS Action Month
Use our template here to send a letter to your representatives, asking them to proclaim October as Vascular Ehlers-Danlos Syndrome Action Month!
Week 2: Let’s focus on Medical Education!
Help Medical Students Learn about VEDS
Apply for the Global Genes RARE Compassion Project, which connects individuals living with rare conditions to medical students who can learn more about the condition from a patient perspective. Learn more at the Global Genes website.
Continuing Medical Education (CME)
Tell your doctor about the new CME course for Vascular Ehlers-Danlos Syndrome, developed with The Sullivan Group. This CME aims to provide an overview of VEDS and associated emergency situations to medical professionals, especially those in emergency medicine.
If you are a doctor or medical professional, consider taking the CME, and consider sharing it with your colleagues, too!
Share Information with Your First Responders
Our brand new 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 (safely and physically distanced) with your local first responders to give them this information!
Ask Your Doctor to Add an Alert 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.
(Ongoing) Ask Your Legislator to Proclaim October as VEDS Action Month
Use our template here to send a letter to your representatives, asking them to proclaim October as Vascular Ehlers-Danlos Syndrome Action Month!
Week 3 – Share Your Proclamations
Did Your Legislator Proclaim October as VEDS Action Month?
Share your success with us @VEDSMovement on Twitter and Facebook!
Haven’t Asked for a Proclamation Yet?
Use our template here to send a letter to your representatives, asking them to proclaim October as Vascular Ehlers-Danlos Syndrome Action Month!
Week 4- Let’s Celebrate!
Join the Birthday Bash!
Celebrate a year of The VEDS Movement by joining our very first Birthday Bash on October 23! This will be a night of fun, celebrating a year of accomplishments and community, and is also a great way to raise vital funds for VEDS! Learn more here.
Haven’t Asked for a Proclamation Yet?
Use our template here to send a letter to your representatives, asking them to proclaim October as Vascular Ehlers-Danlos Syndrome Action Month!
Week 5 – The Wrap Up! Other things you can do
Volunteer
Sign up to volunteer with The VEDS Movement to join the charge forward! There are several different volunteer teams- pick which one is right for you! Learn more.
Get Your Emergency 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.
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!
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 any of them don’t know it. Do you know the signs? #ChargingForward4VEDS
- Are you VEDS Aware? It’s VEDS Action Month. Learn the basic facts. #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.
Sample Tweets:
- 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. #ChargingForward4VEDS
- Many who have #VEDS don’t know it. Know the signs. #ChargingForward4VEDS