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!
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.
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 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.
OPT-IN CONSENT 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 tha t 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 info@pacs1foundation.org . 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. I have read and agree to the Privacy Policy.
Submit Form
Thank you for sharing your story!Contact Registry Form 
