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The CdLS Blog

The Foundation's blog informs families, doctors, friends and whoever else drops by, about CdLS and the Foundation.

This blog serves as a pipeline for sharing Foundation news, research, updates, and details about upcoming CdLS events on a more current basis.Please note: It is not a place to discuss medical issues nor is it a support group forum.

Get ready for Golf in MO

29th Annual CdLS Charity Golf TournamentMonday, October 9, 2017, Sunset Hills, MO Tapawingo National Golf Club This tournament will be held at the Tapawingo National Golf Club; three championship nines designed to allow the golfer to play at his or her skill level. Rivers, lakes and hardwood forests provide the ultimate golf experience. Participants will enjoy 18 holes of golf, lunch, dinner, beer soda and snacks on the course along with the opportunity to win...

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Your "CdLS Family" Doctor

When you think about your child's care team, you probably think about their teachers, grandparents, therapists and medical care professionals. You may also think about the staff at the CdLS Foundation as part of this team. However, there is one care team member who has touched your child's life in many ways, some of which you may not even realize - the Foundation's Medical Director, Doctor Antonie (Tonie) Kline. You may have heard the...

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Five Questions with CdLS Expert Rich Haaland, Ph.D.

Dr. Haaland is currently the President of the CdLS Foundation Board of DirectorsWhat is something about CdLS or the Foundation that people might not know, but should?Many families recognize the Foundation for one or two things, since that's what they call the Foundation for. However, I've had families who have been associated for years come up to me and say, "I had no idea how much the Foundation really does." Don't underestimate what we can...

Volunteer receives award for dedication to service, CdLS

The Mercer County Professional Counselors Association (MCPCA) recently recognized local high school seniors for their community service efforts and academic achievements. The 15 students were hosted at the 22nd annual scholarship breakfast reception at Mercer County Community College on June 1. One of the recipients was CdLS Foundation volunteer Riley Smith. Riley is the granddaughter of Kathy and Gene Van Buren, whose daughter, Jindi, had CdLS and passed away in 2003. The Van Buren family...

Therapy Animals and CdLS

Our friend Demetri was recently featured in Woman's Day Magazine with his therapy horse, Sweet Pea. The two first met last year at an infant development center in Kansas. Demetri is deaf, nonverbal and legally blind, which are common characteristics of CdLS, but made an instant connection with the miniature horse.Although he cannot stand or walk independently, Demetri held onto to Sweet Pea at their first meeting, standing and petting her. This was the longest...

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Showing Your Team Spirit

In March of 2017, the CdLS Foundation launched a t-shirt jersey campaign with the first-ever personalization option. Inspired by mom Samantha McClanahan, the Foundation collaborated with a local, independent printing shop in Lawrence, Kansas. After a two-week sale, 303 t-shirt jerseys were sold to families across the United States. If you purchased from the campaign, you contributed to the nearly $2,600 raised for the CdLS Foundation--wow! Your participation makes a difference in the lives of...

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CdLS Foundation named One by One grant recipient

On March 9, 2017, the CdLS Foundation was announced as an official One by One Award Recipient. This is the second time the Foundation has been honored with a $500 promotional products grant to use toward awareness materials. One by One is the charitable giving program of 4imprint, a promotional items and imprint company. In 2016, 4imprint celebrated its 10th anniversary and doubled its commitment to this work, providing at least two $500 in-kind promotional...

Foundation's first medical director honored with lifetime achievement award

Laird G. Jackson, MD, FFACMG, was honored with the 2017 American College of Medical Genetics and Genomics (ACMG) Foundation David L. Rimoin Lifetime Achievement Award.Dr. Jackson became involved with CdLS from 1962 to the present, and even mentored current CdLS Foundation Medical Director Tonie Kline, M.D. He currently teaches obstetrics, gynecology, and medical genetics at Drexel University College of Medicine.The David L. Rimoin Lifetime Achievement Award recognizes individuals who have demonstrated the personal characteristics of...

Hosting a family gathering

In 2017, the CdLS Foundation will sponsor eight family gatherings in the United States, at least one in each region. Family gatherings provide families with the opportunity to meet others experiencing similar challenges, develop local supports and relationships and gather information about CdLS, ultimately ensuring that no family ever feels alone. While the Foundation budgets for eight Foundation-sponsored family gatherings, there is always the opportunity to host one of your own. CdLS Foundation staff provides...

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Young girl with CdLS gets magic wheelchair, leads race

On Friday, February 10, Emma Pietrafesa was given a magic wheelchair to kick off the Boynton Beach Barrier Free 5K celebration weekend. The 10-year-old was named the official starter of the race earlier this year. The wheelchair was unveiled at a pre-race ceremony at Congress Avenue Barrier Free Park, which is designed with the needs of disabled children and adults in mind, like Emma. Emma has CdLS, and though she is nonverbal, she was able...