Share Your Story

We invite you to share your personal experience to help inspire and connect others who are affected by leukodystrophy and bring visibility to your voice on behalf of the community. Writing prompts are provided below to help you craft a clear, impactful, and inspiring story that raises awareness for this rare disease.

Participation is simple:
1. Share your story below in writing, photos, or a short video; whatever you are most comfortable with.
2. Our team will help craft your submission into a spotlight feature to share across social media, our website, and email communications.

Name *

First

Last

Email *

Phone *

Introduce yourself, your connection to leukodystrophy and how your journey began.

Share your experiences with challenges you have faced navigating leukodystrophy and how it’s affected you and/or your family life?

What advice and/or resources would you give to a family just beginning their journey?

What role has ULF played in your support? Have you participated in caregiver sessions, webinars, received support from the Ambassador Program, been referred by ULF to a clinician, attended the ULF conference?

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What do you wish more people understood about leukodystrophy?

You are welcome to share up to 5 photos and/or 1 video clip.

Click or drag files to this area to upload. You can upload up to 6 files.

Feel free to include anything else you would like to about your leukodystrophy journey.

By submitting your story and photo(s), you are giving the United Leukodystrophy Foundation (ULF) permission to use them in online, print, and promotional materials throughout the year. Please note that submitting your story does not guarantee it will be featured. ULF has the right to edit submissions for clarity, length, or formatting as needed.

We're honored you have chosen to share your story and highlight the incredible resilience of your family. Thank you!

Share Your Story

Share Your Story

Shared Stories:

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