by Gabbie Nadeau | Feb 28, 2019 | Uncategorized
Dear CdLS Community, On this day – February 28th – the rarest day of the year, we take a moment from our daily lives to bring awareness about our community and what it means to live with a rare syndrome or disease. I had the opportunity yesterday to listen...
by Francesca Scognamiglio | Feb 21, 2019 | In Memoriam
I am the parent of a cdls son who is now deceased. Losing Jason was a loss that cannot be measured. The sustaining power of God and many fond memories makes life more tolerable. Jason faced many challenges, but he knew his mama and papa loved him. Papa is gone...
by Francesca Scognamiglio | Feb 21, 2019 | In Memoriam
Joey is our angel that shared 28 months with us. He was the second of our three children, that still has unbelievable impact on all of us, especially his older brother, Richie and his younger sister, Amy. While with us, Joey showed us determination and a stubborn...
by Gabbie Nadeau | Feb 4, 2019 | Uncategorized
Each year on the second Saturday of May, CdLS Awareness Day is celebrated nationwide. The goal of Awareness Day is to raise awareness of CdLS through passionate volunteers and inspire people to learn about the Foundation. This year the CdLS Foundation will be holding...
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