Because no one fights alone!
Darin & Mary Hunter set up the Every Link Matters foundation because they struggled with their own daughter, Emilee's KBG syndrome diagnosis two years ago (on Feb. 26, 2019). The foundation was created to raise awareness and funds for children who have been diagnosed and their families who need help with med
ical and therapy expenses. KBG syndrome is a rare genetic disorder that is caused by a mutation, or loss of genetic material, on chromosome 16q and affects several body systems. "KBG" represents the surname initials of the first three families diagnosed with the disorder. Common signs and symptoms with this condition include unusual facial features, skeletal abnormalities, intellectual disability, hearing loss, seizures, and heart defects. Thank you for supporting us! We're still new so please let us know if you have any questions at all. You can message us directly or please send an email to: [email protected].
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Most Commonly Asked Questions:
1. Is KBG syndrome genetic? It depends! The mutations can occur spontaneously with no family history, or be inherited. In Emilee's case, it is completely spontaneous.
2. Is KBG syndrome new? Good question! We believe the syndrome was first discovered, or written about in medical literature, in 1975. The research and data on KBG is very minimal, almost nonexistent, making it extremely difficult for both families and doctors to navigate.
3. How many people have KBG syndrome? Not a whole lot! As of February 2021, less than 600 people worldwide, most of whom are children, have been diagnosed with KBG syndrome.
4. Is KBG syndrome similar to autism? KBG syndrome can often be misdiagnosed as autism, but they are both very different.
5. How can I help? We're so glad you asked! Please like and share our Every Link Matters page. Tell your friends, coworkers, and families about what you learned today. Tell them that you know someone who is rare!
6. Where can I contribute financially? Thank you! You can visit our website and click the Donate tab. Www.everylinkmatters.org
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To learn more about KBG Syndrome itself please visit KBG Syndrome on Facebook! www.facebook.com/KBGSyndrome
