Send Ella to Disney World

This is Ella.

She is a compassionate and curious nine-year-old girl, with a heart of gold. She loves dogs and babies, anything with wheels, and would much rather run and jump than walk. Like any other 3rd grade student, she enjoys being independent and trying new things. However, for Ella, being independent isn’t always easy.

Ella has a rare condition called STXBP1. So rare in fact, that Ella is among a very small group of people that have been diagnosed with this condition or one similar. It is estimated that there are only 250 people in the world with STX mutations. Ella is one of them.

What is STXBP1? Well, according to her mother, the definition below was the closest thing she could find to a clear and concise explanation.

“Mutations of the syntaxin binding protein 1 (STXBP1) have been associated with severe infantile epileptic encephalopathies (Ohtahara syndrome and West syndrome), but also with moderate to severe cognitive impairment and nonsyndromic epilepsy” From the abstract of an article published in Journal of Child Neurology 2012

Essentially this means that Ella has a mutation on her STXBP1 gene, but as far as what that means for Ella down the road, it’s still unknown. 

Can you imagine living in a world of unknown? A world of 250 people? That’s the world Ella lives in, and the worst part is, she doesn’t know any of the people in her world.

This is where we come in.

Ella’s dream is simple. To meet someone like her. Someone that faces the same challenges as her every day, someone that has the same questions as her, or maybe even an answer to one of her questions.

WPG Cycle wants nothing more than to make Ella’s dream come true, which is why we have paired up with The Dream Factory for our Donate Dominate initiative.

We want to make Ella’s dream come true. Which is why we will be raising funds to send this little girl and her family to a conference at Disney, where Ella and her family will learn more about STXBP1 and have a chance to meet others like them.

For only $10 every Friday, you can take in some exercise to make you feel good inside and out. Have any friends that have always wanted to try spin, but need some motivation to go? Bring them out! Donate Dominate is a great feel-good way to introduce yourself to spin, you’re doing good for your body, all while donating to charity.

Stay tuned to our social media channels to find out more about Ella, and how you can donate.

Have any ideas on how we can do more for Ella? Reach out to us! We love hearing your ideas.
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WPG Cycle 
Winnipeg, MB

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