Share Your Story. Share Your Voice.

Our CLA community celebrates life, inspires hope, and fights to cure this rare disease. We continue Jana Sheets’ dream to create a home so those with complex lymphatic anomalies don’t feel alone.

This year’s Awareness Day focuses on Jana’s goal of connecting people and creating a welcoming community for patients, clinicians, family, friends, and loved ones.

No two stories are the same. Your story inspires hope, builds connections, and educates the public on the impact of about this rare disease. Stories will be featured on our website, social media, and in our upcoming E-Newsletter. Stories will only share your first name, state, and country.

Where do I start?

To help you get started, consider focusing on one following question or create your own. Remember, your story doesn’t need to be long, and can be one or two paragraphs or longer or even a short video.

Topic questions:

  1. What’s your message to those newly diagnosed?
  2. How do you explain your disease to friends and family?
  3. What do you want people to know about someone who died from the disease
  4. What’s your biggest challenge in fighting this disease?
  5. What is the most misunderstood aspect of your disease?
  6. What activities help you to enjoy life while fighting the disease?
  7. What is your biggest success?
  8. What does the LGDA community mean to you?
  9. What’s your hope for the future?
  10. Who do you want to thank for their support?

Submission Guidelines:

  • Anyone can write a story or share a video. Those under 18-years old must have a parent or guardian submit it.
  • Include the full name, age, address, phone and email of the writer/presenter and the person submitting the story (if other than the writer/presenter). Only the  first name, state/city, and/or country, of the writer/presenter will be published.
  • We encourage you to include a close-up photo of the patient to be published with a written story. You may include up to 3 photos.
  • All photos and video must be submitted with a completed LGDA Image Release Form.
  • Optional – those submitting the story/video of a loved one who passed away from one of these diseases can choose to include the name, age, and/or date of death.
  • Email your story as an attachment in DOC/.DOCX format or share in the body of an email along with your photos to info@lgdalliance.org. Videos links can be emailed to info@lgdalliance.org or attached to an email.