Nora's Ninjas

05/02/2026

🔥💙 WE’RE COUNTING DOWN… 4 MONTHS TO GO! 💙🔥

We are officially 4 MONTHS AWAY from our 4th Annual Nora’s Ninjas Pitt Hopkins Awareness Day… and this year, we’re starting EARLY to make it the BIGGEST and BEST one yet! 💪✨
This event keeps growing because of all of YOU—our incredible community—and we’re ready to make even more magic happen this year!

👇 HERE’S HOW YOU CAN GET INVOLVED 👇

🙌 VOLUNTEERS
Have you helped us in the past and want to join again?
Comment “VOLUNTEER” below!
We’ve created a brand new FB page just for volunteers to stay connected and organized this year!

🎁 DONATIONS
Have you donated a basket or gift certificate before and want to do it again?
Comment “DONATION” below!
Your generosity helps make this event so special every single year 💙

🏢 SPONSORS & BUSINESSES
Are you a business looking to support an amazing cause?
Comment “SPONSOR” below!
We’d love to connect and talk about how you can be part of this incredible day—whether it’s sponsoring, hosting a Nora’s Ninjas Day, or contributing to the event!

✨ Let’s come together, spread awareness, and make this year unforgettable for Nora and all the families we support. We can’t wait to do this with you again! 💙💪

03/28/2026

🔥💛 TONIGHT IS THE NIGHT!!! 💛🔥

This sweet little girl has one BIG message… THANK YOU!!! 🥹💫

From the bottom of our hearts, we are beyond grateful for the love and support you continue to show Nora’s Ninjas. You make all of this possible!!!

But tonight is about MORE than just Nora…

✨ It’s about the incredible Shine Gold kids bravely battling pediatric cancer
✨ And our amazing friends at Claudia’s Club, who have created a beautiful space for our special kiddos over 18

💛 TOGETHER, we are making a difference 💛
Every single donation from tonight’s event is going to support THREE incredible charities — and that is something truly powerful!!!

🎉 And don’t forget… we’ve got some FUN in store!!!
💰 50/50 raffle — bring that extra cash!
🍷 Mystery Wine Pull — over 100 bottles waiting for you! Take a chance and see what surprise you go home with!

Let’s celebrate, give back, and make tonight unforgettable!!!

We can’t wait to see everyone there!!! 💃🕺💛

Are you all ready for the NERDS GONE WILD tonight!?

Thank you to everyone who made tonight possible!
SOLD OUT World's LARGEST 80's Party with NERDS GONE WILD!
Nora's Ninjas
Claudia’s Club Hope Rises
Kate Glaser you are one incredible. woman and we are so thankful for EVERYTHING you do for Nora and our entire community!
GO CAR WASH
Paulas Donuts

03/27/2026

Soundwave DJ and Photo is super excited to be donating the photo booths for the SOLD OUT World's LARGEST 80's Party with NERDS GONE WILD! party tomorrow!

Come dance the night away and help raise money and awareness for THREE AMAZING Foundations!! Make sure you stop and snap a photo in our photo booth and share and tag us on our social media!

Nora's Ninjas Hope Rises and Claudia’s Club are so thankful for all of our supporters!!!

Big shout out to the Nerds Gone Wild we can't wait to watch you rock out the entire night!!! Kate Glaser thank you for EVERYTHING you have done to sell out this event! 900 tickets sold! It's going to be an EPIC night!!

03/23/2026

5 more days ..... we can't wait to see everyone at the World's LARGEST 80's Party with NERDS GONE WILD! This event is so incredible and you do not want to miss it! You are supporting Nora's Ninjas, Claudia’s Club and Hope Rises Shine Gold kids!!!! Less than 100 tickets left!!

50/50 , wine pull, costume contest!!
great music with the best band in Buffalo- World's LARGEST 80's Party with NERDS GONE WILD!

COME PARTY WITH US!!! WE WILL ALL BE ON THE DANCE FLOOR!!!!

03/10/2026

We’re looking for a little help from our amazing community! 🍷

For the upcoming World's LARGEST 80's Party with NERDS GONE WILD! Nerds Gone Wild event, we’re hoping to collect 50 bottles of wine to use for our Wine Pull. If you’d like to support the event and donate a bottle (or two!), we would be incredibly grateful.

All donations will help make this a fun and successful night for everyone involved. If you’re able to contribute, please reach out to coordinate drop-off.

Thank you for always supporting our events and making our community so special! ❤️

Eddy Tabone Sr.
Marie Conta
Claudia’s Club
Hope Rises
World's LARGEST 80's Party with NERDS GONE WILD!

02/28/2026

Today is Rare Disease Day 💙

We're celebrating all of the amazing individuals who are bravely living life with rare disorders - especially ourbeautiful little girl, Nora. She teaches us strength, patience, and unconditional love every single day. Don't forget to rock your Nora's Ninjas shirt! Snap a selfie and post it in the comments below!!

In honor of Rare Disease Day, we're asking our friends and family to take just a minute to pledge a small donation in Nora's name. Your support helps raise awareness, fund critical research, and bring hope to families like ours.

If you'd like to donate, you can do so here:

 https://pitthopkins.org/noras-ninjas/7

Thank you for standing with Nora and the entire rare disease community.


Nora's Ninjas Pitt Hopkins Syndrome

02/26/2026

🚨 The Truth Behind the Scenes- We are tired of it (Love Nora's Pic for this post!)

What some people may not realize is that Nora is 9 years old. She’s still in diapers. She can’t stand independently.

What many don’t see is how incredibly hard it is to be out in public — on a road trip, at a function, at the park, at the store — anywhere that isn’t home — when she needs a diaper change.

Over the last few months, I’ve sat in my car and cried after pulling into rest stops or public bathrooms, only to find there is nowhere safe to change her. Or worse, there’s only a “standard baby changing table.”

If you’ve ever looked at those closely, you’ll see they typically have a 50-lb weight limit. They’re designed for infants — tiny babies. Not a 9-year-old child.

It’s not practical. It’s not safe. Trying to position my almost 50-lb daughter on a narrow table bolted to a wall, with her head and legs hanging off both ends, is terrifying. It’s something I can manage when I have help… but it’s scary even then.

Today, I was alone. In Wegmans. My child was crying — probably because it’s scary for her too. I was sweating. Praying. Trying to stay calm and just get through it.

Two mothers were in that bathroom with their children. Not one offered to help.

And I need the world to understand something:
It is OK to ask, “Do you need help?”

Maybe people are afraid of offending us. Maybe they don’t know what to do. Maybe they feel uncomfortable. I understand that.

But please — ask anyway. Let me decide if I want help. Give me the chance to say yes or no.
For the parents quietly struggling in public spaces, that simple question can mean everything.

And for businesses, rest stops, stores, and public spaces — please hear this too: Not every child over toddler age is potty trained. Disabled children grow up. They become teenagers. They become adults.

We have made space in this world for so many important changes.

Accessible, safe changing spaces for older children and adults needs to be one of them. 💙

02/25/2026

🚨🚨🚨 BIG NEWS for our Pitt Hopkins community!!! 💙✨
The very first child has been dosed in a gene therapy clinical trial for Pitt Hopkins syndrome — a HUGE milestone that so many families have been praying and working toward for years. This is real progress. This is hope in action.

As many of you know, Nora’s Ninjas was created to help support the incredible work of the Pitt Hopkins Research Foundation. Everything we do — every event, every share, every donation — is about pushing research forward and bringing meaningful treatments closer to our children.

Today feels historic.

We are so thankful for each and every one of our supporters who have stood beside us. Your love, encouragement, and generosity truly matter. You are part of this progress. 💙

From the bottom of our hearts — THANK YOU for being part of Nora’s Ninjas and for believing in a brighter future for everyone living with Pitt Hopkins syndrome.

Let’s keep going. Let’s keep fighting. Let’s keep hoping.

Full press release here: https://www.prnewswire.com/.../mahzi-therapeutics...

It feels almost surreal to be able to share what is without a doubt the most remarkable milestone in the history of the Pitt Hopkins research. Today we are announcing that the first patient has been dosed with Mahzi’s gene-replacement therapy, MZ-1866, and is doing well. Eight years in the making, this extraordinary achievement reflects countless hours of dedication and an unwavering belief in hope.

This win belongs to so many, and our gratitude for all of them is beyond words.

Our first patient and their family are quiet heroes. Their courage and determination to pursue a better life for their child will help open the door to a better future for so many others.

The Muotri Lab, led by Dr. Alysson Muotri at UCSD, whose visionary research not only demonstrated that gene therapy could work in cellular models, but also reminded us that hope was real.

Yael Weiss and her devoted team at Mahzi Therapeutics, who took this drug out of academia and made it a top-tier product ready for human trials.

Our incredible donors who have stuck with us through thick and thin.

The Pitt Hopkins community, who believed in us even when the road to treatment felt impossibly long.

And above all, our Pitt Hopkins children—you are the true heroes. Your remarkable courage, resilience, and heart inspire us every day to keep moving forward, not only to hope for miracles, but to fight for them. Always.

Read full press release here: https://www.prnewswire.com/news-releases/mahzi-therapeutics-announces-first-patient-dosed-in-phase-12-unite-study-of-mz-1866-for-pitt-hopkins-syndrome-302696349.html?tc=eml_cleartime

01/29/2026

DATE SECURED!
9.16.26
4th annual Nora's Ninjas PITT HOPKINS DAY!

11/27/2025

to all of our Nora's Ninjas supporters.....we are SO THANKFUL for each and every one of you!!

Wishing you all a Happy Thanksgiving!!!