Submit Your Story

Sharing your story is a powerful form of advocacy. By sharing the experiences of your GM1 loved one(s) and family, you can help humanize this disease and spread awareness.

First name*

Last name*

Email*

Phone number

Where do you live?

What is your GM1 loved one's name?*

What is your GM1 loved one's date of birth?

Your story

How did you feel when your child received a diagnosis of GM1?

What is the impact of GM1 on your child? / What was the impact of GM1 on your child?

How does GM1 impact your family? / How did GM1 impact your family?

What is the hardest part of being a GM1 caregiver? / What was the hardest part of being a GM1 caregiver?

What do you wish people understood more about rare diseases and the experience of living with GM1?

If we could tell people just one thing about GM1 gangliosidosis, what would it be?

Why should people support the Cure GM1 Foundation and rare diseases?

Is there anything else you would like to add to your story?

Photos

Can you share 3-5 photos of your GM1 loved one and your family?*

At least one photo is required — up to 5 photos, JPEG, PNG, WEBP, or HEIC (iPhone), max 10MB each. You can pick several at once or add them one at a time; each pick adds to the list below.

Name(s) of subject(s) in photos.

Photo & media release

Type your full legal name to sign*

I am an adult submitting on my own behalf, or a parent or guardian with consent to make this submission.*

I have read and agree to the photo and media release above.*