This year has been difficult. Our lives have been changed. This Black Friday Holiday we have decided to participate in a different manner. We chose to support a cause very near and dear to our hearts RettSyndrome.org
We advocate for Rett syndrome families because every child deserves a fair shot at a healthy, flourishing life. Through our efforts we hope to raise awareness, fund research for a cure and empower those on this journey.
Rett syndrome is a rare genetic neurological disorder that occurs almost exclusively in girls and leads to severe impairments, affecting nearly every aspect of the child’s life: their ability to speak, walk, eat, and even breathe easily. Rett syndrome occurs worldwide in 1 of every 10,000 female births, and is even rarer in boys.
The hallmark of Rett syndrome is near constant repetitive hand movements. Rett syndrome is usually recognized in children between 6 to 18 months as they begin to miss developmental milestones or lose abilities they had gained.
Cognitive assessment in children with Rett syndrome is complicated, but we know that they understand far more than they can communicate to us, evidenced by their bright and attentive eyes, and their ability to express a wide spectrum of moods and emotions.
I was welcomed into the Rett Syndrome family 5 years ago when I first attended Casting 4 a Cure. I began this journey as a novice fly fisherman and with no awareness of Rett Syndrome. Each year my appreciation of Rett families grows and I hope I can contribute anything meaningful. I am fortunate and blessed to be healthy and positioned to provide financial support and a platform to increase awareness for this ruthless disorder and those affected. Our hearts are with Rett Families and the children, we are here for you. Treatment is possible, a cure is the dream. Thank you for shopping with us over this weekend and please spread the word.”
-Dusty Zeiner, MailegUSA CEO
With the holiday season quickly approaching, we hope you join us. and help spread a little joy to those who need it the most. Whether it’s big or small, your purchase will bring us one step closer to a cure. Because the best deal is one that will change a child’s life. Tis’ the season of miracles!
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Photo Credits: RettSyndrome.org