We support individuals who are living with KAT6A and KAT6B syndromes around the world. 🧬 We advance research aimed at developing treatments.
Joined February 2019
- Tweets 1,563
- Following 84
- Followers 499
- Likes 1,066
1,052 Photos and videos
Looking for a meaningful way for your business to make an impact this year? Consider KATwalk sponsorship!
The KATwalk is our largest annual fundraiser and global awareness event, supporting KAT6 families worldwide.
View opportunities here: cdn.prod.website-files.com/6…
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It's Empowered Wednesday!
Meet Eray - an Empowered Grant recipient participating in play and speech therapy - just two of many therapies eligible for assistance through our program.
kat6.org/empowered-grant
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The KAT6 Foundation is pleased to announce Aimee Reitzen as our new Executive Director!
Many of you know Aimee through her years of service to our community as a founding Board member and longtime volunteer.
Read more: kat6.org/post/announcing-our…
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Sponsorship opportunities available for KATwalk '26!
Your sponsorship funds Empowered Grants, community events, family resources and vital research.
Visit us here for more info: cdn.prod.website-files.com/6…
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Stay connected with the KAT6 community!
Our events page highlights upcoming conferences, fundraisers, and community gatherings. It’s the best place to learn about opportunities to connect, participate, and support KAT6 families.
Explore upcoming events: kat6.org/events
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Interested in hosting a KATwalk this year? Let us know! Complete our KATwalk survey before June 1st.
docs.google.com/forms/d/e/1F…
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This RARE sibling duo🧡🧡
May 25
Nothing recharges Lusia’s batteries like quality time with Cannon.
Back to Utah & the grind tomorrow morning.
Love you, baby. Go be great & attack everything.
#BrothersKeeper
#AutismWarrior
#KAT6Asyndrome
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Joining the @RareDiseases KAT6 Patient Registry is one of the most meaningful ways families can help move research forward and is the only place where individuals with KAT6 are officially counted.
Get started here: kat6a.iamrare.org/
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Whether you’re newly diagnosed or have been on this journey for years, having the right resources makes all the difference.
Our Family Resources page makes it easy for KAT6 loved ones to access webinars, newsletters, support groups, and more!
Start here: kat6.org/family-resources
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We love seeing the smiling faces of our KAT6 community! Want your loved one to be featured? Email your favorite photos to Aimee at aimee@kat6.org to contribute to our growing online photo gallery!
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"Beyond the practical support, the Empowered Grant has given us reassurance as a family, knowing that we're not alone on this journey. We're deeply thankful to the KAT6 Foundation for making a meaningful difference in our child’s growth and development."
kat6.org/empowered-grant
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KATwalk 2026 will take place throughout the month of September, bringing together KAT6 families across the globe with the shared goal of raising funds and awareness to support our community.
Interested in hosting? Fill out our survey: docs.google.com/forms/d/e/1F…
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We're proud to collaborate with and help fund ongoing work led by Professor Jose Sanchez-Alcazar’s team at the @pablodeolavide in Seville.
Read a brief version of the latest update here: cdn.prod.website-files.com/6…
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KAT6 Foundation retweeted
The KAT6A & KAT6B Caregiver Handbook has been translated into 18 languages - including French, Hindi, Korean, Polish, Russian - allowing us to support more of our KAT6 families worldwide.
Explore the handbook: kat6.org/family-resources
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KAT6 Connect registration is open!
Throughout the weekend, families will have opportunities to connect with other KAT6 families, take part in social outings, and participate in KAT6 research.
Register here: donate.kat6.org/connect2026
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The @RareDiseases KAT6A/KAT6B Patient Registry has been upgraded - including improved survey navigation and mobile-friendly access!
Whether you're joining for the first time or returning to provide updates, your participation makes an impact.
👉🏼 kat6a.iamrare.org/
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After years of inconclusive testing, a deeper analysis uncovered a rare KAT6A syndrome variant. This feature from @UofUMedicine highlights Noahs journey, underscoring the importance of continued investment in research and innovative diagnostic approaches.
giving.utah.edu/stories/when…
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KAT6 Foundation retweeted
NORD® invita a la comunidad de enfermedades raras a unirse a nosotros en "Living Rare, Living Stronger" #Phoenix, #Arizona le 8 de Mayo de 2026.
Este evento representa una oportunidad Ăşnica para conectar directamente con pacientes, cuidadores y defensores dentro de la comunidad de #EnfermedadesRaras de Arizona.
Fecha: Viernes, 8 de mayo de 2026
Hora: 10:00 a. m. – 2:00 p. m.
Lugar: Grand Canyon University, Education Center Building 71
3300 W. Camelback Road, Phoenix, AZ 85017
Enlace de registro: livingrare.org/arizona/
#EnfermedadRara
ALT Graphic promoting Living Rare Arizona
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The KAT6 Blog houses stories from families, foundation updates, and news from our community - a place to share experiences, stay connected, and learn from one another’s personal journeys. kat6.org/blog
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