Ebb Therapeutics Fundraiser in honor of Noah Richard Van Schoick
Oct
1
to Oct 31

Ebb Therapeutics Fundraiser in honor of Noah Richard Van Schoick

May was a month that our CEO, Don Spence and his wife, Pat, were looking forward to for nine long months.  May was the month that their first grandson, Noah Richard Van Schoick, would be welcomed into this world.  Noah’s highly anticipated arrival finally happened on  May 29th, 2019. Noah is the first child of Don & Pat’s daughter, Erin, and her husband Chris.  This was, by far, one of the most joyous occasions for both the Spence and Van Schoick families. 

Unfortunately, on May 31st, the family received some very difficult news about Noah.  They learned that Noah has a genetic disorder called Galactosemia, which means that Noah cannot process galactose which is found in dairy products and even in mother’s milk.  He will not be able to nurse and is now on a non-dairy prescription formula.  Noah’s body cannot process lactose at all.  Fortunately, the post birth genetic screening found the problem before he had much exposure.  If left undetected, 75% of newborns are likely to die in the first 30 days.  Even with strict dietary control, those with Galactosemia have a high chance of developmental disorders as the body produces galactose naturally and overtime it can impact organs including the brain.  At this time, Noah seems to be doing well and enjoying all of the attention he is receiving from his loving parents and doting grandparents.  

Galactosemia is a family of rare, genetic disorders that result from compromised ability to metabolize the sugar galactose.  There is no known cure for Galactosemia at this time.  It is estimated to affect 1 in every 50,000 individuals.  Please join us in honoring Noah by donating to help educate, support and provide advocacy for those affected by Galactosemia.

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Jul
14
to Jul 16

2016 Galactosemia Foundation Conference

Join us for the 2016 conference at the Renaissance Atlanta Waverly Hotel & Convention Center

An opportunity to learn about all aspects of Galactosemia, the 2016 conference will focus on addressing real-life situations faced by those with Galactosemia. Workshops will offer practical strategies and tools that can improve the quality of life for individuals with Galactosemia and their families. In addition to the General Session for adults, professional childcare services by specially trained staff will be offered for all ages.

Through exciting, optional social activities, the conference allows an opportunity to meet other parents, dieticians, physicians, children and adults with Galactosemia, as well as a chance to sample various “safe and delicious foods.”

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