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How to Help

Share Your Story

Share Your Story. Share Your Voice.

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


Stories can be written or it can be a video. Here is an example of a story outline:

  • Begin with information about yourself or the person you’re writing about. Who are you, what do you like to do for fun, or what you do.
  • 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.


Answer one or all the questions in our form to create a quote.

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 and Consent Form.
  • Submissions can include the name, age, and/or date of death of an individuals who passed away from the disease.
Submit your story
Writer's Information
First Name *
Last Name *
Please select your country:
Address Line 1 *
Address Line 2
City *
State/Province *
Postal Code
Upload Files

You may upload your story, video, photos, quote, and the LGDA Image Consent and Release Form. Items can also be emailed to

No file selected
My most challenging aspect living with GLA/KLA/GSD/CCLA is ...
I want researchers and doctors to know...
If treatment could help with .... it would make a meaningful difference to my life.
What matters most to me is.....