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, 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:
Action Items
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 join the legislative action team and get a proclamation for your state, email dnoe@marfan.org
VEDS Kids Book Project
Have a kid with VEDS under 18? We are creating a book for young kids with VEDS written by kids with VEDS! The project will be open for submissions through the month of October. Get more information and create a submission for the project 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!
Week 1: Celebrate!
Join the Birthday Bash!
Celebrate two years of The VEDS Movement by joining our Birthday Bash on October 7 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
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
The VEDS Movement
You can share your story with The VEDS Movement, through our Share Your Story form here!
Social Media
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)
You can also click these links to see sample Facebook, Twitter, and TikTok posts, and digital swag for your social media pages.
Meet with Your School About VEDS
Is your kid with VEDS in school? Meet with the team at the school and share information about VEDS by sharing the School Nurse and Teacher packets with them.
Tell Your Representative About VEDS
Share what is most important to you with your representative by using this easy tool to Educate Your Lawmakers.
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 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.
Week 4: Get Involved
Join us for a webinar on Understanding Clinical Trials- October 26, 7 pm Eastern
As we look forward to clinical trials for potential treatments for VEDS, we at The VEDS Movement want to provide our community with an understanding about participation in a clinical trial and what’s important to know to help you make a decision for you and your family. Join Dr. Hal Dietz, Dr. Shaine Morris, Dr. Peter Byers, and Dr. Xavier Jeunemaitre for a presentation and Q&A on how clinical trials work and an explanation of common clinical trial terms. Watch the recording.
Volunteer
Sign up to volunteer with The VEDS Movement to join the charge forward! There are several different 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 DiSCOVER trial (celiprolol) by Acer Therapeutics and PREVEnt trial (enzastaurin) by Aytu BioPharma are not yet enrolling. The VEDS Movement will provide updates on these trials as they are announced, and you can also sign up for updates on each of these trials at the clinical trial websites 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.
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.
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. 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
TikTok
If you are on TikTok, you can create a FAQ about VEDS TikTok video using these instructions! You can use Destiny’s video for reference, as well as the instructions below the video. You can also type whatever frequently asked questions you get about VEDS and answer them instead of the ones Destiny chose in her video.
Instructions
- Find the sound: “The Magic Bomb (Questions I get asked) Extended Mix”
- Click “Use Sound”
- How to Record the Dance
- Count to the beat of 4…then
- Right fist out
- Left fist on top
- Right fist on top x5
- Clap x1
- Peace sign fingers to the top and then to the bottom as a swoop
- Repeat until the end of the song
- How to Add the Questions
- Click “Add text” on the lower Right hand side
- Type “What is VEDS?”
- Click that same text and select “set duration”
- Set duration to 2.3 seconds
- Save
- Type “VEDS is a life-threatening genetic connective tissue condition”
- Click that same text, as above, and select set duration
- Set duration to 2.4 Seconds
- Save
- Type “How rare is VEDS?
- Repeat above steps 7 through 9
- Type: “Not as rare as you think! 1 in 50,000!”
- Repeat above steps 7 through 9
- Type: “Is there a cure for VEDS?”
- Repeat above steps 7 through 9
- Type: “Not yet! We’re working on it!” (Or personalize your response!)
- Repeat above steps 7 through 9, or until the end of your video
- Click “save,” which will take you to where you can save and post TikTok video. In the “Describe your video section” Destiny wrote: “FAQ about #VEDS! #TheVEDSMovement #FYP #VEDS #VascularEDS #EDS #foryoupage #VEDSActionMonth. You can also use #ChargingForward4VEDS
- Allow duets, stitching and comments…select “Seen by everyone” and post and share!