Miesha & Tilyn

03/01/2026

02/11/2026

Some of the Barber crew out on assignment today at The Lodge at Brookline, taking care of more of our elders in the community! Great job guys!

01/29/2026

Today we share a typical day in our family as we navigate life with an ultra rare disease called TUBB4A related leukodystrophy HABC. In this video, we take y...

01/12/2026

This hit home

I wasn’t meant to be a special needs mom.

I wasn’t given a special child because I am some sort of ultra special, amazing, strong person.

I was given a special needs child because genetics didn’t play out in her favour.

I am your average person, who was given a child who required more.

More love, more care, and more attention.

I was not strong, but made stronger because of my child and her needs.

I am not amazing, I am human.

I adapted to our life with her needs.

That’s what humans do, we adapt and change to our situations and surroundings.

“I don’t know how you do it.”

I have to.

I just get up each morning and do it, because my child depends on it.

Any of the parents who have said this to me would do the exact same thing if they were put in my position.

Us special needs parents, we’re not superhuman.

We’re just parents taking care of our kids, loving them just as you love yours.

So I guess that makes all parents pretty amazing, right?

If you love and care and give your children a happy, healthy life regardless of what their medical file says or doesn’t say, then you are equally as amazing! ♥️

We’re all just parents trying to make it to bedtime each day.

Written by: Carla Moore from Payton's Path
Written: August 5/21

01/05/2026

Research matters more than you know

While philanthropic investment in any area of biomedical research or health care is worthwhile when done strategically, rare diseases are especially compelling

12/29/2025

Please share

12/29/2025

At only 6 years old, Tilyn has endured years of unexplained symptoms and misdiagnosis. His mom, Miesha, refused to stop fighting until she found answers and a community that finally understood. Read their story here: https://ulf.org/2025/12/tilyn-story/

12/18/2025

Shared from the Foundation to Fight H-ABC

This is incredible news for the Leukodystrophy community. And paves the way for h-abc/tubb4a. The current landscape for our condition is as follows. Several researchers In the Leukodystrophy community are researching achievable biomarkers to identify for testing in newborn infants. This is either blood markers or imaging markers. Larger efforts are underway in the healthcare industry using Pilot programs to establish broader standards and engage with state agencies. Why is this important? Early intervention is critical in many conditions to detect a condition and treat it early. Getting this approved however requires a commercially available approved treatment which is what we are working towards.

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12/09/2025

Holidays filled with hope matters to those living with Leukodystrophy! Special thanks to the foundation to fight H-ABC for helping fuel hope!

12/01/2025

Tomorrow is a big day!