Child Stories Form – INADCure Foundation

Thank You for Sharing your Child’s Story

The INADcure Foundation works to increase knowledge and awareness of Infantile Neuroaxonal Dystrophy (INAD), and all of our INAD families have an important role to play. We’re looking to gather as many of our children’s stories as possible for possible future use on the INADcure Foundation’s website, newsletters, social media, patient brochures, advocacy efforts, and more. INAD is a complicated neurodegenerative disorder, but these stories help us better explain what INAD is and how it impacts hundreds of children and their loved ones around the world. Every family’s journey with INAD is important to share and we thank you for sharing your story with us!

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Child’s Profile

Please answer the questions below as completely as you like.
Please understand that we may only use a portion of what you submit, and we cannot guarantee that every story submitted will be featured.

Name*

First Last

Current Age*

Birth Date*

Address*

City State Postal Code Country

Your Contact Information

Please provide your contact information so we can reach out with any follow up questions.

Submitted By - Your Name*

Relationship to Child*

Phone Number

Email Address*

Yes, please add my email to your e-newsletter list

Questions

Please answer the following questions to best of your ability.

Tell us about the process of getting your child’s diagnosis

Child’s age when diagnosed

How has living with INAD impacted your child’s life?

What are your child’s favorite activities?

What are your child’s favorite foods?

What is your child’s favorite television/movie character?

What is your child’s favorite book?

As a parent, do you have a favorite motto or expression?

What do you want the world to know about your child or experience living with INAD?

Tell us anything special about your family you would like to share (siblings, pets, etc.)

Attachments

Please submit as many photos of your child and family as you would like to share with us. The pictures that are most useful are about 2MB in size. This can be accomplished with a smartphone or camera. AT LEAST ONE IMAGE REQUIRED

Drop files here or

Accepted file types: png, jpg, jpeg, mp4, mov, Max. file size: 5 MB, Max. files: 5.

If you are new to the INADcure Foundation and would like information on how to get involved with fundraising for INAD research, patient engagement opportunities, or INAD awareness and advocacy efforts, please click this box and someone will follow-up with more information soon.

Yes, I want someone to contact me

By filling in the form above, I am giving the INADcure Foundation permission to share the attached photos and submitted information on the INADcure Foundation website, blog, social media, brochures, newsletters, and other media. I also understand that submitting this information is not a guarantee that this story will be featured.

Required*

I agree to share my child’s story with the INADcure Foundation for the purposes stated above.

Thank You for Sharing your Child’s Story

Child’s Profile

Your Contact Information

Questions

Attachments

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Copyright © 2024 INADcure Foundation
All rights reserved.