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How to Help

Share Your Story

Share Your Story. Share Your Voice.

No two stories are the same. Share your story with our community to inspire hope, build connections, and educate the public on the impact of about this rare disease. 

Where do I start?

Consider focusing on one or two of following questions or create your own.

  • How do you explain your disease to friends and family?
  • What do you want people to know about someone who died from the disease?
  • What’s your biggest challenge in fighting this disease?
  • What is the most misunderstood aspect of your disease?
  • What activities help you to enjoy life while fighting the disease?
  • What is your biggest success?
  • What does the LGDA community mean to you.
  • What’s your hope for the future of treatments and a cure or general life goals?
  • Who do you want to thank for their support?
  • Despite my disease, I’ve been able to …
  • My daily challenges due to my disease include …

Is there an outline example?

  • Begin with information about yourself or the person you’re writing about. Who are you, what do you like to do for fun, what you do, or a personal story.
  • Include information about your diagnosis and how long ago.
  • Include any obstacles you have overcome due to the disease and any daily challenges.
  • Include how LGDA helped you, describe it’s impact, or how the community supported you.
  • End your story with a message for those newly diagnosed.

What are the submission guidelines?

  • Your story can be written or a video.
  • Writers under 18-years old must have a parent or guardian submit it.
  • Photos can be included.   
  • Only the first name and state/city/region/country of the writer will be published.
  • Must agree to LGDA's Image Release Form.
  • Submissions can include the name, age, and/or date of death of an individuals who passed away from the disease.
  • It will be shared on our website, social media, and publications.
Submit your story, photo, video
Writer Information
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Last Name *
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Submitter Information (if different from writer)
First Name *
Last Name *
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