CTX Alliance

10/10/2026

Register today!

Join the United Leukodystrophy Foundation (ULF) tomorrow Sunday, October 11th at 1:00 PM ET/ 12:00 PM CT for a virtual support group designed specifically for caregivers of families affected by leukodystrophies.
Register here: https://us02web.zoom.us/meeting/register/lY3UG0_RRvejfALZyJ1NIg #/registration

09/28/2026

Thank you to everyone who joined our recent CAFE: CTX Alliance Family and Patient Exchange!

CAFE gives CTX patients, families, and caregivers a welcoming space to connect, share experiences, and learn from others who truly understand the challenges of living with CTX.

We are grateful to everyone who participated and helped make the conversation meaningful. Stay tuned—our next CAFE meeting date will be announced soon!

09/25/2026

Every baby deserves a healthy start to life, no matter where they are born. 🫶

CTX Alliance has joined the Surge to Save Newborns, a campaign to ensure that every baby in every state receives lifesaving screening at birth for expert-recommended conditions.

Right now, some babies miss narrow treatment windows to prevent lifelong disability or premature death because states face challenges in implementing updated screenings.

Join us and To Save Newborns in calling on Congress to pass a one-time surge of funding to implement screening for all conditions included on the Recommended Universal Screening Panel (RUSP).

💜 Learn more: surgetosave.org
💜 Take action now: https://surgetosavenewborns.quorum.us/campaign/us/

09/21/2026

Another CTX Awareness Day proclamation has arrived—this time from CONNECTICUT! 🎉

September 17 may have passed, but the proclamations are still coming in, and we’re still celebrating every victory!

Each proclamation helps raise awareness of CTX and brings greater recognition to our community. Thank you, Connecticut, for joining us in recognizing CTX Awareness Day!

09/19/2026

The CTX Alliance continues to develop initiatives that strengthen our community and improve the future for everyone affected by CTX. These efforts take time, but we remain committed to creating lasting resources, partnerships, and programs.

You make this work possible. By joining the GEM Club (Give Every Month), even a modest monthly gift of $10, $20, or any amount that fits your budget provides dependable support to help turn ideas into action. Together, monthly donors help us plan ahead, meet community needs, and build a stronger future for individuals and families affected by CTX. 💙

Join the CTX Gem Club:
https://ctxalliance.org/gem-club/

09/17/2026

Wisconsin, Texas, and Washington are officially recognizing September 17, 2026, as CTX Awareness Day!

We are incredibly grateful to the advocates, families, and state leaders who helped make these proclamations possible.

Every recognition helps bring greater awareness to CTX and strengthens our voice for earlier diagnosis, better care, and a brighter future for those affected.

Today, we celebrate how far awareness can travel!

CTX Alliance
United Leukodystrophy Foundation

09/17/2026

A big thank you to the States of MICHIGAN and NEBRASKA for another two official proclamations for CTX Awareness Day!

This day is for our CTX community—patients, families, caregivers, and advocates—to come together, raise awareness, and celebrate the resilience of everyone affected.

CTX Alliance
United Leukodystrophy Foundation

09/17/2026

More proclamations for today's CTX Awareness Day from MARYLAND and MASSACHUSETTS!

Thank you for raising awareness about this rare, progressive genetic disorder that affects families worldwide.

We encourage everyone to learn more about CTX, support those who are impacted, and help shine a light on this treatable disease.

CTX Alliance
United Leukodystrophy Foundation

09/17/2026

It’s here—CTX AWARENESS DAY! 🎉

We are deeply honored that neighboring states ILLINOIS and INDIANA have officially proclaimed September 17, 2026, as CTX Awareness Day!

Today, we come together to raise awareness for Cerebrotendinous Xanthomatosis (CTX), a rare genetic disorder, and to help more families receive the recognition, earlier diagnosis, resources, and support they deserve.

Help us spread the word and shine a light on CTX!

09/17/2026

September 17th is CTX Awareness Day! 💙
Today, and every day, we celebrate the CTX community and are grateful for the amazing impact social media has had in raising awareness, educating countless people, and shining a light on CTX, a rare but treatable disease.

It's not too late to join us tonight, at 6:30 p.m. CT/ 7:30p.m. ET for our CAFE: CTX Alliance Family & Patient Exchange. This is an informal virtual gathering for CTX patients, families, and caregivers to connect, ask questions, share experiences, and support one another.

You can register here: 
https://tinyurl.com/SeptemberCTXCAFE