Every Link Matters CO
The Every Link Matters foundation was established in January 2021 by Darin & Mary Hunter to raise awareness and funds for KBG syndrome families directly. Because no one fights alone! #EveryLinkMatters #KBGsyndrome #KBG #RareDisease #WeAreRare SUPPORT FAMILIES AFFECTED BY KBG SYNDROME
ICO
862101424
652
Web
everylinkmatters.org
Address
Woodstock
Home - Every Link Matters NOONEFIGHTSALONE Darin and Mary Hunter set up Every Link Matters because they struggled with their own daughter Emilees KBG syndrome diagnosis on February 26 2019. The charity was created to raise awareness and funds for children who have been diagnosed and their families who need help with medical and therapy expenses. Instead of using social media they have decided to be the social media outlet and support for families like themselves who are on the KBG journey. Every Link Matters 5th Annual Golf Tournament Every Link Matters is excited to present our 5th Annual Golf Tournament at The Fairways of Canton.
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Discussions
Odpovědí v diskuzi
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- What strategies can NGOs like Every Link Matters implement to effectively raise awareness for rare diseases such as KBG syndrome?
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Brooklyn Simmons
2 days ago
Odpovědí v diskuzi
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- How can community events, like golf tournaments, be leveraged to foster a sense of solidarity among families affected by KBG syndrome?
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Brooklyn Simmons
2 days ago
Latest reviews
Together, we can make a real impact in communities around the world. Help us bring hope and support.
What a wonderful initiative! 💙 The Every Link Matters foundation is truly making a difference for families affected by KBG syndrome. Count me in for the golf tournament! ⛳️ #EveryLinkMatters
Brooklyn Simmons
Product Manager
I just learned about KBG syndrome, and I’m so inspired by the work Darin and Mary are doing! Together, we can raise awareness and support these amazing families. Let’s spread the word! 💪❤️ #WeAreRare
Brooklyn Simmons
Product Manager
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