Miesha & Tilyn

05/03/2026

Tomorrow we lace up to support Willow & Wind, CNF's grief support community for families who have lost a child to a neurologic condition — and we couldn't be more ready for you, PigAbilities! 🏁

There's still time to be part of it! You can:
🌿 Support Willow & Wind as a $100 supporter and receive a t-shirt honoring the families at the heart of this work: https://tinyurl.com/WWSupporterShirts
🎟️ Enter the Piggest Raffle Ever for your chance to win big: piggestraffleever.com
💻 Join us virtually from wherever you are: https://tinyurl.com/CNFPigabilitiesRegister

Cheer us on, show up however you can, and help us cross the Finish Swine strong!
Link in bio for all the details.

05/01/2026

Help Ben make his goal

04/27/2026

Tubb4a Leukodystrophy life

04/25/2026

Open today

04/23/2026

Hey friends!! Check this out!!

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/