Adventures with Ace - Life with Sanfilippo

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Adventures with Ace - Life with Sanfilippo This is Asher’s journey with Sanfilippo Syndrome (MPSIIIA).

08/25/2026

We are beyond excited to share that Asher’s Make-A-Wish trip is happening this October!💙

Asher will be heading to Give Kids the World Village and Walt Disney World for an unforgettable adventure, and we couldn’t be more excited to watch him experience all of the magic!

For us, this trip is about so much more than a vacation. It’s a chance to step away from appointments, therapies, and the everyday challenges that come with Sanfilippo syndrome and simply make memories together as a family. Memories we will treasure forever.

A huge THANK YOU to Make-A-Wish Texas Gulf Coast and Louisiana for granting Asher’s wish and giving our family this awesome opportunity. We are so grateful for everyone who helps make wishes like Asher’s possible. This was a true team effort and they made this a seamless process!

October can’t get here soon enough!

Disney World, here comes Asher!!!

It’s been over two years since Asher’s diagnosis, and we are still fighting for a cure. We’re getting so much closer, th...
11/25/2025

It’s been over two years since Asher’s diagnosis, and we are still fighting for a cure. We’re getting so much closer, though. The amount of research and recognition of Sanfilippo has grown so much in the last decade. We’re hopeful that we’ll have the first approved treatment next year. A big reason for the significant progress in Sanfilippo is due to Cure Sanfilippo Foundation. That’s why we’re raising funds for them this Giving Tuesday. If you have a few dollars to spare, please consider giving. If you don’t, sharing about Sanfilippo is just as important. Thank you for your love and support over the last few years. It fills us with hope. 💜

https://www.facebook.com/donate/24959553957073240/?fundraiser_source=external_url

Tomorrow, November 16th, is World Sanfilippo Awareness Day💜Please wear purple and tell someone about Sanfilippo Syndrom...
11/16/2025

Tomorrow, November 16th, is World Sanfilippo Awareness Day💜

Please wear purple and tell someone about Sanfilippo Syndrome and help us spread awareness of this devastating disease. Drop your photos of you wearing purple below! 💜🫶🏼💜

09/07/2025

Memories are hard. They just show us what Sanfilippo has already taken away from him. 🥺

Today is the last day to sign and potentially save lives in only 20 seconds.The FDA delayed a gene therapy that could sa...
08/06/2025

Today is the last day to sign and potentially save lives in only 20 seconds.

The FDA delayed a gene therapy that could save children with Sanfilippo syndrome — a disease that steals children’s voices, mobility, and memories.

The science behind the drug is strong. But red tape is holding it back.

We’ve already lost time. We can’t afford to lose more.

Please sign the letter now. Add your voice to the 25,000+ who are urging the FDA to meet with families and review this treatment with urgency.

This is our final push for the letter. The deadline is tonight. Don’t wait.

Thank you to everyone who has already signed. You are incredible and showing the world how many people care about rare!

🔗 https://tinyurl.com/UNC-RareDis
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