By sharing your child's story, you are supporting the PACS1 Syndrome Research Foundation's efforts to raise awareness and vital funds for disease-specific research.

PACS1 Syndrome is thought to affect approximately 250 children and young adults worldwide. Because PACS1 Syndrome is so rare, it's difficult for our families to connect with other PACS1 Syndrome families. It's our hope that through sharing our stories, we can help others feel less alone.

Tell Us About Your PACS1 Syndrome Warrior

First and Last Name (person completing this form):

Relationship to Child:

Email:

What is your child's name?

When is your child's birthday? (to be used for birthday shout-out posts)

When was your child diagnosed with PACS1 Syndrome? Tell us about the process leading up to the diagnosis? What was the diagnosis journey like for both you and your child?

How has yours and your child's life changed since joining the PACS1 community?

Please tell us a little bit about your child! For example, what are your child's favorite hobbies, what makes them unique?

Are there any recent acheivements, milestones (of any type) or events that you'd like us to celebrate with you via our social media channels? For example, elementary school graduation, learning to swim, or riding a bike for the first time!

What hopes do you have for your child and/or the future of PACS1 research?

Is there anything else you'd like to share with us about your child?

Before you hit submit, did you know that the PACS1 Syndrome Research Foundation is the only 501(c)(3) non-profit organization in the U.S. dedicated to finding treatments and ultimately a cure for PACS1 syndrome? And that PACS1 families are banding together to raise the funds needed to advance these discoveries?

There are so many ways to support the Foundation and PACS1 community, and we are here to help you every step of the way!

Do you have a Classy page for fundraising and raising awareness? If not, would you be interested in learning more? Anyone can create a page to support our efforts. We can assist you in developing a campaign centered on your child's story and why this cause is important to you.

Yes, please contact me via my email to tell me more!

No thank you, I can not help at this time.

Would you like to learn more about Facebook birthday fundraisers? We love this manner of fundraising because in addition to being EXTREMELY simple, Facebook does not charge any processing fees, which means that 100% of donations go to the PACS1 research program!

Yes, please contact me via my email to tell me more!

Not right now thank you.

Please submit up to 4 photos of your child that the Foundation may post on social media and use in Foundation materials for the purposes of raising awareness and advocating for families affected by PACS1 Syndrome. Photographs should be submitted in either. JPG or. PNG format.

Upload File 1

Upload File 2

Upload File 3

Upload File 4

PHOTO RELEASE & CONSENT

I, the parent/guardian of the minor child in this story submission, consent and grant to the PACS1 Syndrome Research Foundation (“Foundation”) the right and permission to use and publish the statements made by me, as well as the images of my child provided by me, in any and all media formats for the Foundation’s website and social media channels, presentations and brochures, media and press releases, and other similar purposes directly related to the Foundation’s operations. I allow the Foundation to reprint and reuse the photo(s) in various media formats for unlimited uses over an indefinite period. Use of the photograph(s) is granted at no charge to the Foundation. I understand and agree that I am not entitled to any compensation or royalties concerning the use of the photos. The Foundation has sole discretion to crop, edit or otherwise enhance the images. I certify that the pictures submitted are my original work and that I am the sole copyright owner if copyrighted.

By clicking agree and submitting the form, you agree to the photo release terms.

I agree.

Thank you for sharing your story!
If you have not yet done so, please complete the Family Contact Registry Form so that you can receive updates from the PACS1 Syndrome Research Foundation!
Contact Registry Form

By sharing your child's story, you are supporting the PACS1 Syndrome Research Foundation's efforts to raise awareness and vital funds for disease-specific research.

PACS1 Syndrome is thought to affect approximately 250 children and young adults worldwide. Because PACS1 Syndrome is so rare, it's difficult for our families to connect with other PACS1 Syndrome families. It's our hope that through sharing our stories, we can help others feel less alone.

Tell Us About Your PACS1 Syndrome Warrior

PHOTO RELEASE & CONSENT

Thank you for sharing your story! If you have not yet done so, please complete the Family Contact Registry Form so that you can receive updates from the PACS1 Syndrome Research Foundation! Contact Registry Form

Thank you for sharing your story!
If you have not yet done so, please complete the Family Contact Registry Form so that you can receive updates from the PACS1 Syndrome Research Foundation!
Contact Registry Form