Louie's HUWE

12/02/2025

🎉 It’s Giving Tuesday – Let’s Change the Future! 🎉

Today, we unite for Louie’s HUWE, a mission dedicated to families impacted by HUWE1-related genetic conditions. HUWE1 is a vital gene involved in brain development, and when it mutates, it can lead to significant challenges for children and their loved ones.

That’s why Louie’s HUWE is partnered with Seattle Children’s Research Institute to drive groundbreaking research that could unlock answers and transform lives. Every gift brings us closer to understanding HUWE1 and creating hope for families everywhere.

💜 Your impact starts now. Your generosity fuels discovery.

👉 Donate today: https://givebutter.com/7ue949

📣 Share this post and spread the word!

Together, we’re not just giving—we’re building a future full of possibilities.

12/01/2025

💜 Tomorrow is Giving Tuesday! 💜

Every person living with a HUWE1-related genetic condition has a story worth sharing—and a future worth fighting for. These rare conditions often go unseen, but together we can change that.

Your gift to Louie’s HUWE helps fund research, provide resources, and give hope to families navigating HUWE1. Let’s make sure no one feels alone in this journey.

📅 Just 1 day left—spread the word and join us!

👉 Donate here: https://givebutter.com/7ue949

11/30/2025

Only 2 Days to Go!

Individuals living with HUWE1-related conditions face daily challenges—speech and motor delays, behavioral differences, sensory sensitivities, and complex medical needs. These impact independence, communication, and quality of life. 💜

But together, we can make a difference!

Your support helps fund research, provide resources, and build a community of hope for every family affected.

Join us this Giving Tuesday: https://givebutter.com/7ue949

Spread the word. Share the love. Change lives.

11/29/2025

💜 Giving Tuesday is Almost Here! 💜

On December 2, we join a global movement of generosity. This year, we’re asking you to stand with families impacted by HUWE1-related genetic conditions through Louie’s HUWE.

Your support helps provide hope, resources, and community for those who need it most.

📅 Mark your calendar and get ready to make a difference!

👉 Donate early or learn more: https://givebutter.com/7ue949

Together, we give. Together, we share.

By Louies Huwe

02/28/2025

Honored to be attending Rare Disease Day at Johns Hopkins University today! 💜
It’s an inspiring day filled with knowledge, connection, and hope. Together, we can amplify awareness and support for those impacted by rare diseases.

02/28/2025

Rare Disease Day is HERE, and at Louie’s HUWE, we’re raising our voices to support those affected by rare diseases, specifically HUWE1.💜

Our mission is to bring awareness, fund crucial research, and provide hope for families impacted by HUWE1-related conditions. 🦓

Join us in making a difference! 🌟 You can support our Rare Disease fundraiser and help fund research here: https://givebutter.com/LHRareDiseaseDay

Also, don’t forget to grab your special HUWE1 Rare Disease Day T-shirt and wear it proudly to spread awareness! 👕
Get your swag here: https://louieshuwe.printful.me

Together, we can make a lasting impact!

02/27/2025

🦓 Tomorrow’s the big day – Rare Disease Day is almost here! Let’s keep the momentum going and turn our stripes into a symbol of support for those living with HUWE1. 💜

We’re SO excited to announce the launch of the Louie's HUWE Merchandise Fundraiser! 🎉
Featuring NEW designs and a special HUWE1 Rare Disease Tee while supplies last!

Proceeds will go towards Louie’s HUWE mission of supporting HUWE1 families and funding HUWE1 medical research.

Note: International orders will need to be placed separately through Sydney Pruitt. You can reach her at [email protected].

🔗Get your gear here: https://louieshuwe.printful.me

Tomorrow, wear your stripes with pride! 🦓

02/26/2025

🌟Rare Disease Day is just TWO DAYS away!🌟

We’re gearing up to celebrate the strength, resilience, and hope of those living with rare conditions like HUWE1. 💜✨

Did you know? HUWE1 plays a critical role in regulating cell function, and mutations in this gene can lead to developmental delays, intellectual disabilities, and physical challenges. It’s rare, but together we’re raising awareness and building a stronger community of support!

Let’s get ready to spread the word, support each other, and rock those zebra stripes! 🦓🐾

Together, we’re making a difference!

12/31/2024

THANK YOU for supporting HUWE1 families in 2024 💜🧬

As a super rare condition, our international community’s contributions make an impact supporting families affected by HUWE1-related conditions. Thank you to those who have shared info, donated or fundraised, or simply followed the posts 💜. Together, in 2024 we have created…

🧬 A growing community - the HUWE1 gene Families Facebook Group has grown by over 100 people in 2024, now with nearly 600 members!
🧬 Progress in research - as well as our existing partnerships at Seattle Children's Hospital and Johns Hopkins Children's Center, Louie’s HUWE have been honored to partner with Dr Damon Page, an expert in advancing understanding of the genetic causes and potential treatments for neurodevelopmental disorders. Learn more about research projects supported by Louie’s HUWE: https://www.huwe1.org/louieshuwe/research-projects
🧬 The RARE - X HUWE1 data collection program has continued to grow, thank you to everyone participating. Join or update your symptoms here https://www.huwe1.org/data-collection
🧬 The Louie’s HUWE ‘1 in a Million Gala’ raised over $100K for HUWE1 research - enormous thanks to all involved ✨
🧬 Thank you for supporting our fundraisers, including our merch and apparel sales, Crocs and Socks, Coffee for a Cause, 2nd Annual Benefit Concert, the Combined Federal Campaign, Kindsight Kindness Board, and Giving Tuesday plus multiple Facebook birthday fundraisers throughout the year - your donations are what drives our HUWE1 research projects 🥰 get involved with fundraising here https://www.huwe1.org/louieshuwe/fundraisers
🧬 We welcomed new Louie’s HUWE board members including Executive Director and HUWE1 Mom, Sydney Pruitt - read more about our team of volunteers: https://www.huwe1.org/louieshuwe/team
🧬 The City of Fort Pierce in Florida, USA, proclaimed February ‘HUWE1 Month’! 🗓️
🧬 We launched our first HUWE1 Welcome Guide for Newly Diagnosed Families, available to download here https://www.huwe1.org/louieshuwe/newly-diagnosed
🧬 We made new collaborations with Global Genes, CamRare and CVI Now
🧬 And finally, we remember those we have sadly lost in our HUWE1 community this year, our thoughts are with your families 💜

Once again, we thank you all for your support, through our community we are not alone 🧬🌏✨

If you would like to get involved or volunteer please email [email protected] or if there’s any updates we’ve missed please do let us know. Best wishes for 2025 💜

12/03/2024

🎉 A huge thank you to everyone at Lincoln Park Academy for your incredible generosity this Giving Tuesday! 🙌 Louie’s HUWE was honored to run a Coffee for a Cause booth, and thanks to your support, we raised $1,037! ☕️💙

Your kindness will go a long way in helping us continue our mission, and we’re so grateful to be part of such a wonderful community. Together, we’re making a difference!