Submit your Kool Family

First Name of Kool Individual *

Last Name of Kool Individual

Profile Photo *

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Photo of the Kool individual alone and focused on the face for use on their profile page.

Age *

Mutation or Deletion *

Diagnosis Date

If exact diagnosis date is unknown, please provide approximate date.

Name of Sibling(s)

First Name of Parent(s)

Last Name of Parent(s)

Email Address *

Quote

Optional quote to display on Kool individual’s profile page

You may provide up to 5 additional photos and descriptions.

Photo 1

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JPG or PNG format. 2MB Max File Size

Photo 1 Description

Photo 2

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JPG or PNG format. 2MB Max File Size

Photo 2 Description

Photo 3

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JPG or PNG format. 2MB Max File Size

Photo 3 Description

Photo 4

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JPG or PNG format. 2MB Max File Size

Photo 4 Description

Photo 5

Drag & Drop Files, Choose Files to Upload

JPG or PNG format. 2MB Max File Size

Photo 5 Description

Facebook

URL of Kool individual’s Facebook page

Instagram

URL of Kool individual’s Instagram page

YouTube

URL of Kool individual’s YouTube page

Please answer a minimum of 1 of the following questions.

How did you feel when your child was first diagnosed?

What does your KdVS individual love the most?

How does KdVS affect your child?

How has KdVS affected your entire family?

What is the hardest part about having KdVS?

What is the hardest part about being a KdVS parent?

What is the biggest misconception about being a KdVS parent or an individual with KdVS?

What would you tell newly diagnosed parents about KdVS?

What would you tell doctors, teachers and therapists about KdVS individuals?

Why are you asking people to donate to the KdVS Foundation?

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