The Evanosky Foundation

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The Evanosky Foundation exists for the purpose of generating funds to support two main objectives. It will support pediatric leukodystrophy research as well as assist and care for children and families affected by one of the leukodystrophies and/or other disabling conditions.

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202506901

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Aurora

Address: 234 Aspen Lane, AuroraWeb: Sign in to see organisation websiteICO: 202506901

Evanosky Foundation | The Evanosky Family The Evanoskys have three childrenJohn Christopher and Jackwho were diagnosed with late infantile metachromatic leukodystrophy MLD in January 2005. MLD is a rare genetic degenerative neurometabolic disorder that affects approximately one in 40000 people primarily children worldwide. It is an inherited disease but parents are typically not affected. Jack received an unrelated umbilical cord stem cell transplant in April 2005.

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Victor

1. What strategies can NGOs like the Evanosky Foundation implement to increase awareness and support for diseases like metachromatic leukodystrophy (MLD) among the general public and healthcare providers?

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Evelyn

Your dedication to supporting families affected by leukodystrophy is truly inspiring! Every effort counts in the fight against this rare disease. πŸ’™ #HopeForTheFuture

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Evelyn

2. How can we encourage collaboration between research institutions and patient advocacy organizations to expedite breakthroughs in treatments for rare pediatric conditions like leukodystrophies?

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Linda

So grateful for organizations like the Evanosky Foundation that are making a difference in the lives of children and families facing such challenges. Together, we can bring awareness and support to those in need! 🌟 #TeamEvanosky

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Aurora

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