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Amazing how fast two years goes by! Dante has been busy. He is in the second grade, loves school and his friends, and has been…

We’re super excited to kick off a new FUNdraiser! We teamed up with Pals Socks to help raise funds for CureSPG52. Now through June 4th…

We met with a new orthopedic today to see about non-surgical options to help Dante with his spasticity. She said his range of motion is…

We’re celebrating Rare Disease Day 2021 by raising awareness for SPG52 and the entire rare disease community. In a year when we all feel isolated,…

Rare is many. Rare is strong. Rare is proud. Did you know there are 300 million people worldwide living with a rare disease, and over…

Happy new year! I know many of us are so ready to say good bye to 2020 and move onto to the new year. It’s…

Dante started back to school for his summer session last week, which is all distance learning and a full schedule but after the first few…

We know it’s been a while – the world shut down, the world started to open up again, summer arrived! We’ve been super busy with…

Thank you so much to everyone who has offered their business as a drop off location for our shoe drive! We are overwhelmed (in the…

In case you missed it, Dante is now a local celebrity! 7 Eyewitness News aired a story on him today about his rare disorder and…