How Can I Contribute?

Follow us on Social Media

Our Facebook page is a wealth of information and content for people and families of KAT6 syndromes. It’s a great way to stay informed on recent research and seminars/talks/clinics, and to connect with other families.

Encourage your social media contacts to follow our public pages on Facebook, Instagram, X, LinkedIn and YouTube.

Join the KAT6 Foundation: KAT6A and KAT6B Research and Raising Awareness Group on Facebook.

 

Complete the Registry

Goals of the KAT6A/KAT6B Patient Registry are to:

  • Bring the KAT6 community together and collect data which could be used to create therapeutics and improve the quality of life for patients.
  • Conduct a prospectively-planned natural history study that will result in the most comprehensive understanding of KAT6 syndromes and the progression over time.
  • Characterize and describe the KAT6 population as a whole.
  • Assist the KAT6 community with the development of recommendations for standards of care.
  • Assist researchers studying the pathophysiology of KAT6 syndromes.
  • Assist researchers studying interventional outcomes. Support the design of clinical trials for new treatments.

Participate in our Annual KATwalk

Every year, we dedicate several days in September/October to help raise awareness for KAT6 syndromes. We have t-shirts made and encourage friends and families to donate to our foundation. This is our biggest awareness and fundraising event of the year. In 2024, we raised $200,000 USD! 

Become a Fundraiser

Participate in our “I Care for Rare” campaign. This is an ongoing fundraising campaign that you can choose to start and end at your own convenience. There are several ways to support this fundraiser. It could be for your child’s birthday rather than accepting gifts, or perhaps you want to collect donations for a virtual raffle. Just follow the simple steps on the “I Care for Rare” page to customize your fundraising details.  After that, share your personal fundraising page link across your social media platforms and don’t forget to directly ask your potential donors through email, text or phone. Consider the opportunities within your community to hold a fundraiser, whether you talk to a local business about holding an event, or by asking if they would consider donating a percentage of their profits on a specific night.

Download and print the KAT6 Foundation brochure and other fundraising materials for your awareness activities and events. 

Write a Blog

We’d love to hear your story. Since KAT6 syndromes are so rare, our families can feel alone and secluded. Hearing from other people around the world about their daily struggles, challenges they’ve overcome, or any other moment to offer insight into your daily lives can really help us all feel connected. We are our greatest resource, the more we know, the more we can share, and the better we can come to understand KAT6 syndromes.

Offer Your Time

We are always looking for volunteers to help with various aspects of the foundation. If you have any special skills or talents that could contribute in any way, we’d love to hear from you! Specifically, we’re looking for people who have experience in writing grants, as well as, translators to transcribe our resources into various languages.