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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.

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.
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!

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


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 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 royalties or compensation of any kind concerning the use of the photos. The Foundation has sole discretion to crop, edit or otherwise enhance the images, without my prior review or approval.  I certify that the pictures submitted are my original work and, if copyrighted, that I am the sole copyright owner.

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


By checking the box below, you acknowledge and agree to the terms and conditions stated in our Privacy Policy. You give your express consent for the collection, use, and disclosure of your personal information as described in the Privacy Policy. You understand that at any time you have the right to withdraw your consent for the Foundation to use and disclose your information prospectively, subject to the terms of the Privacy Policy, by contacting us at Please note that, should you withdraw your consent, the Foundation has a right to retain any personal information that you previously shared with us, and data already disclosed or transferred to third parties will not be recalled.  Your withdrawal of consent will not affect any personal information that you shared with the Foundation or that the Foundation disclosed before you withdrew your 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

Tell Us About Your PACS1 Syndrome Warrior

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