Parent volunteers support our Board and team members in a variety of meaningful roles. If you are interested in supporting our work or exploring a Board position, we would love to connect.
The KAT6 Foundation welcomes volunteers who are passionate about advancing our mission, especially those who are willing to share their skills and experience.
To help connect you with our committee leaders, we ask that you complete a brief volunteer form. We will not share your personal information outside of the Foundation.
Complete Volunteer FormHow can I contribute?
Spread Awareness Through 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.
Participate In Our Annual KATwalk
Every year, we dedicate several days in September 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.
Complete The Registry
The goals of the KAT6 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.
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.
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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 offer a variety of committee opportunities for volunteers who want to get involved, including Conference Planning, Fundraising, Science, Advocacy, Grants and Sponsorship, Technology, and Marketing and Communications. Complete volunteer form.
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EVENTS
Upcoming events from the KAT6 Foundation
The KAT6 Foundation has events all year long, all across the nation! See our upcoming events below:
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