For the Love of Lilly Lou, Inc.

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For the Love of Lilly Lou, Inc. Raising Money for a CURE!!! Pelizaeus-Merzbacher-Like Disease (PMLD) doesn't just delay milestones—it slowly erases them. Will you stand with us? Donate now.

A baby’s first smile fades into uncontrollable eye movements. Tiny hands that once grasped toys grow stiff with spasticity. Often words never come, steps are lost, and families watch helplessly as their child’s hard-won abilities slip away, year by year, with no cure in sight.This ultra-rare, progressive leukodystrophy steals futures one quiet regression at a time. Parents hold their children tighter, fighting fear, knowing time is running out. We are For the Love of Lilly Lou, Inc., born from love, grief, and fierce determination. We're racing to fund cutting-edge genetic therapy research to halt this thief and give these children back what PMLD takes. Every donation either fuels scientists working on breakthroughs that could stop the progression, preserve precious skills, and let kids laugh, play, and grow like they deserve or helps families affected by PMLD get the care they need. Will you stand with these brave families? Your gift today could be the moment a child keeps walking, speaking, or simply smiling longer. Together, we rewrite endings that feel inevitable. Share their stories. Be the hope they cling to. Because no child should fade away. →

💜💖💙 This month we stand with every leukodystrophy & PMLD warrior and their families.We won’t stop fighting.For the love ...
09/05/2026

💜💖💙 This month we stand with every leukodystrophy & PMLD warrior and their families.
We won’t stop fighting.
For the love of our 💜💖💙 LILLY LOU 💙💖💜
Follow & share the light. ✨

September is Leukodystrophy Awareness Month

This month, we’re shining a light on the families, caregivers, researchers, advocates, and individuals living with leukodystrophies, including those affected by Pelizaeus-Merzbacher Disease (PMD) and Pelizaeus-Merzbacher-Like Disease (PMLD).

Leukodystrophies are rare, often misunderstood disorders that affect the brain and nervous system. For many families, the journey to diagnosis, support, and treatment can feel overwhelming and uncertain.

Awareness helps change that.

This September, help us spread understanding, amplify the voices of rare disease families, and support the search for better treatments and, ultimately, a cure.

Learn. Share. Advocate. Support.

Together, we can bring more light to leukodystrophies and the people whose lives they touch.

This is for such a great cause 💜💙🩷
08/10/2026

This is for such a great cause 💜💙🩷

🎶 If you didn’t purchase tickets for the first date, here’s your chance! Saturday, August 29th at the VBC Mark C. Smith Concert Hall in Huntsville, AL! Doors will open at 6:30pm. Tickets can be purchased at the VBC box office or from the Ticketmaster link below. You don’t want to miss Sammy Kershaw and North AL’s own Titus Thornton! Come out and support 2 local nonprofits and enjoy an exciting night of live music! 🎶 See you there!

🔗 https://www.ticketmaster.com/southern-social-2026-featuring-sammy-kershaw-huntsville-alabama-08-29-2026/event/2000647B9D023D9A

Rocket City Trash Pandas WE’RE SO READY!!! 💜💖💙 LILLY LOU 💜💖💙 can’t wait to meet Chase the Police Pup!🐶
08/09/2026

Rocket City Trash Pandas WE’RE SO READY!!! 💜💖💙 LILLY LOU 💜💖💙 can’t wait to meet Chase the Police Pup!🐶

💜💖💙 Turning Grief into Good 💜💖💙In our North Alabama community, two beautiful foundations show us every day what it means...
08/07/2026

💜💖💙 Turning Grief into Good 💜💖💙

In our North Alabama community, two beautiful foundations show us every day what it means to take the deepest heartbreak and turn it into hope and help for others.

Wells Clayton Whitworth Memorial Foundation, founded by Chad and Kelley Whitworth after the loss of their precious son Wells, provides critical support to families facing the unimaginable loss of an infant. They help cover funeral and burial expenses, headstones, plots, and grief counseling so parents can focus on healing instead of unexpected costs. Their work has touched hundreds of families across multiple North Alabama hospitals.

Sarah Gayle Gibbs Memorial Foundation, started by the Gibbs family after the unexpected loss of their sweet 17-month-old Sarah Gayle, gives back through financial and emotional support to families who have lost a child—and also supports the incredible nurses and doctors (especially at Huntsville Hospital PICU) who care for these little ones and their families during the hardest days.

These families chose to honor their children’s memory by lifting others up. That kind of love and strength inspires us all.

For the love of 💜💖💙 LILLY LOU 💜💖💙, we encourage our supporters to get out and support these worthy causes too. Whether through donations, attending events, or simply sharing their stories, every bit of support helps continue this beautiful cycle of turning grief into good.

Concert details are below for Sammy Kershaw and Titus at the VBC (rescheduled from 8/1/26 to 8/29/26)!

Let’s keep showing up for each other. 💜💖💙

Well...we have our new date for Sammy Kershaw as the headliner for the 2026 Southern Social.

It's August 29th at the Von Braun Center Mark C Smith Concert Hall.

Sammy is looking forward to this new date. All tickets purchased for the August 1st show will be honored for the August 29th show. If you can't make this date we encourage you to give your tickets to a friend or you can get a refund at your point of purchase.

If you couldn't join us for the Aug. 1st show but can for the Aug. 29th show you can get your tickets here

https://www.ticketmaster.com/event/2000647B9D023D9A

We are SO excited for this Sunday, Rocket City Trash Pandas!Chase is reporting for duty at Toyota Field on August 9th, a...
08/07/2026

We are SO excited for this Sunday, Rocket City Trash Pandas!

Chase is reporting for duty at Toyota Field on August 9th, and we couldn’t be more pumped! Come out for a PAW-some family day filled with:
⚾️ Special meet & greet with Chase
⚾️ Game-worn specialty PAW Patrol jerseys up for auction (proceeds benefit For the Love of Lilly Lou, Inc.!)
⚾️ Postgame Kids Run the Bases

Pepsi Gates open at 3 PM — bring the whole family and help us make this day extra special!

Tickets are available at the link in the comments. Let’s pack Toyota Field and show up for the kids!!

Chase is reporting for duty THIS SUNDAY, August 9 at Toyota Field thanks to Chase Bank! 🐶💙

Bring the whole family out for a PAW-some Sunday featuring a special meet & greet with everyone's favorite police pup, game-worn specialty PAW Patrol jerseys that will be up for auction to benefit For the Love of Lilly Lou, Inc., AND postgame Kids Run the Bases presented by Listerhill Credit Union!

Pepsi Gates open at 3 PM, and you can get tickets at the link in comments!

08/05/2026

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We are so incredibly honored to be the recipient of the game-worn, Paw Patrol jersey auction!!! Grab your tickets now a...
08/03/2026

We are so incredibly honored to be the recipient of the game-worn, Paw Patrol jersey auction!!! Grab your tickets now and come share this special day with us 💙🐶💙🚀🗑️🐼Rocket City Trash Pandas Chase Listerhill Credit Union

Time is running out! 6 of our LAST 18 home games in the regular season happen this week!

🦝 Jimothy Night + Jimothy Mask Giveaway to first 200 kids + Pregame Raccoon Dress-Up Parade + Tito's Handmade Vodka Tail Waggin' Tuesday
📖 Book Worm Night presented by Marx Optical + W**e Wednesday
💀 Grateful Dead Night + Throwback Thursday + Live Music Pregame by Milltowne + Postgame Drone Show
🎆 You Are Not Alone Night presented by Still Serving Veterans + Postgame Fireworks
🚀 Space Night + Game-Worn Specialty Jersey Auction Benefitting The Caring Link + Postgame Fireworks presented by SAIC
🐶 Paw Patrol Day presented by Chase Bank + Paw Patrol Chase Meet & Greet + Game-Worn Specialty Jersey Auction Benefiting For the Love of Lilly Lou, Inc. + Postgame Kids Run the Bases presented by Listerhill Credit Union

GET TICKETS AT THE LINK IN COMMENTS!

This is such a cool community spotlight for our girl, our battle, and all of those affected by rare diseases!!! Thank yo...
07/31/2026

This is such a cool community spotlight for our girl, our battle, and all of those affected by rare diseases!!! Thank you, Rocket City Trash Pandas

07/31/2026

⚾️ Batter batter… SWING!! ⚾️

We are OVER THE MOON to announce that For the Love of Lilly Lou is the official recipient of the Paw Patrol Jersey Auction at the Huntsville Trash Pandas game on Sunday, August 9th!!

How cool is that?! Not only do we get to share Lilly Lou’s story and put a bright spotlight on PMLD, but we also get to be part of an awesome afternoon at the ballpark with the Trash Pandas!

Come out, grab your friends and family, cheer on the Trash Pandas, enjoy a fun afternoon of baseball… and support For the Love of Lilly Lou while you’re at it! Every cheer, every high-five, and every jersey bid helps us keep spreading love and awareness.

Mark your calendars:
⚾️Sunday, August 9th
⚾️Toyota Field – Rocket City Trash Pandas

Let’s pack the stands, make some noise, and show the Rocket City what community looks like!

We can’t wait to see you at the ballpark!

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Huntsville, AL

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