2024 Scleroderma Awareness Month

Building recognition and understanding of scleroderma and its impact on individuals and families

Every Journey Matters

June is Scleroderma Awareness Month. We know that every person’s experience with scleroderma is unique. That’s why this year, we’re embracing the theme: Every Journey Matters. This June we want to share your stories with the entire scleroderma community and the world. In addition to the Foundation’s social posts, TealTalks and Stepping Out to Cure Scleroderma walks, we want to shine a light on your stories and your efforts to shine a light on scleroderma in your community. We hope you’ll share a video with us telling your story, send us a photo of how you’re lighting up your home teal, and send us photos of how you’re getting involved with Awareness Month.

Awareness Month will culminate on World Scleroderma Day, June 29. World Scleroderma Day highlights the need to increase awareness of scleroderma and to advocate for those affected by this life-threatening disease.  June 29 was selected in 2009 by FESCA (Federation of European Scleroderma Associations) as World Scleroderma Day to commemorate Paul Klee, a gifted abstract artist who died of systemic sclerosis on June 29, 1940.
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2024 #TealTalk Series

To celebrate Scleroderma Awareness Month, we are bringing our community together for our #TealTalk series of live conversations with special guests.  You won’t want to miss this!

Be sure to mark your calendars for these dates and be on the lookout for more information to come.  All #TealTalk events are on Thursdays at 2 pm ET.

  • Thursday, June 6: Young Adult Table Discussion
    • Join us for our first 2024 Teal  Talk with a Young Adult Panel focused on working, dating and parenting while living with scleroderma. Please register here for the event: Registration Page.
    • Panelists: Nikhil Bhat, Amanda Lippincott and Sade Taylor

Thursday, June 13: Stem Cell Transplants & Scleroderma

  • Thursday, June 20: What’s Exciting in Scleroderma Research
    • Join us for a #TealTalk discussion on the latest in scleroderma research: Registration Page.
    • Panelists: Carol Feghali-Bostwick, PhD, and Kathryn Torok, MD

Thursday, June 27: Self-Care Toolkit

Links will be posted when they are available.

Proclamations and Light Ups

Proclamations:

  • A proclamation is an official designation of an event. Proclamations are a great way to educate the public about a specific issue and bring attention to a cause.
  • It is an effective tool for gaining public recognition of your event because it carries the full support of a key government official in your state or community.

Light Ups:

  • During scleroderma awareness month in June, we will be lighting up across the USA.
  • Why? To raise awareness
  • Theme: Let’s talk about scleroderma
  • Hashtag: #tealtalk

To share photos from proclamations and light-ups you have secured, please complete this form: scleroderma.org/awareness_light_up_photo_submit
Training Video

Social Media & Outreach Toolkit

Patio with teal lights

Light your space teal during Awareness Month! Share photos of your lights on social media using #everyjourneymatters. Email your photos to communications@scleroderma.org and we will share photos across our channels, and you will be entered into a random drawing for National Scleroderma Foundation SWAG.

Each person’s experience with scleroderma is unique, and every journey matters. Tell your story in a 30-60 second video and share it on social media using #everyjourneymatters. Email your video to communications@scleroderma.org and we will share your video across our channels, and you will be entered into a random drawing for National Scleroderma Foundation SWAG.

Video Examples:

Meghan Thomas

Hanna Ortiz

Video Best Practices & Ideas to Get Started:

Position your phone vertically in a quiet, well-lit location; keep your video less than one minute in length, keep it simple, wear teal. Ideas for your videos, such as: tell us about your journey, what advice do you have for others, what's one thing you wish others knew about scleroderma, what keeps you motivated or brings you joy, and what support have you received on your journey.

Spread awareness this June by adding a social media frame to your accounts. Social media frame example

To get started: 

 

      1. CLICK HERE to access Canva template file. If you already use Canva, you will be prompted to sign-in. Otherwise, you can create a free Canva account to use the frame.
    2. You will see a slide that provides some short instructions. Then you can select the frame you’d like to use.
    3. Upload your photo into Canva.
    4. Drop your photo into the template. You can then export the file as a jpg or png.
    5. Upload your completed photo to your social media accounts.

Every Journey Matters social media image.During the month of June, the Foundation will post on our social media platforms (Facebook, Twitter, Instagram, and LinkedIn), with videos and photos that communicate our theme of “Every Journey Matters.” We encourage everyone in the scleroderma community to share these posts onto their own social media accounts in order to reach the widest audience possible.

Help us elevate the conversation and download your own toolkit today!

Thank You Sponsors

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