A message on Rare Disease Day

A message on Rare Disease Day

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...
Jason Shufelt

Jason Shufelt

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...
Joseph (Joey) Haaland

Joseph (Joey) Haaland

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...

2019 Awareness Day T-shirt Contest

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...