Monthly Archives: December 2006

We’ll Leave the Luyt On, Thank You

Brian Luyt is leaving the CdLS Foundation’s board of directors and we’ll miss him.

The tall Texan (and Katie’s dad) is watching his second three-year term expire and he rotates off of our volunteer board at the end of the year.

What I’ll miss most about Brian is his willingness to try anything to help other families of children with CdLS. Even before joining the board, Brian and his lovely bride Mary hosted the Foundation’s 1999 National Conference in Dallas. This accomplishment alone puts the two of them in the running for sainthood.

Once on the board, Brian rode across Iowa on a bike to raise awareness and money for our efforts. He traveled to St. Louis to play golf in the Foundation’s longest-running benefit golf tournament (Madison County Wood Products) AND THEN decided to team-up with fellow Texan and board member, Rob Rodriguez, to start their own benefit golf tournament.

When the board traveled to Washington, D.C. early in 2006, Brian not only attended scheduled meetings with his congressional representatives, but also “dropped in” on the offices of officials from other states.

Brian had nearly, if not absolutely, perfect attendance at board meetings (sorry Brian, I don’t keep role), arriving early and staying until the sometimes contentious end. Using planes, trains or automobiles, Brian always arrived, ready for duty, when our mission called. He has written letters, made (many) telephone calls, and otherwise done everything we have asked over the last six years.

He has even volunteered to continue making telephone calls now that his board service is ending. And you can bet I will hold him to it; there is no way I will let such a dedicated volunteer ride off into the sunset to disappear.

Brian, you are a scholar and a gentleman. We will miss you. (And believe me, that’s the first time I’ve ever said that about a Bruin.) – DC

 Brian Luyt

Brian showing off his farewell gift at the October board meeting.

katie-and-brian-luyt-conf-06-224.jpg

Brian and Katie tripping the lights fantastic at the 2006 CdLS conference.

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Gatherings Make Ordinary Days Feel Like Holidays

Over the past few months, families in four states came together to share the joys and struggles of raising a child with CdLS.

At family gatherings in New York, Wisconsin, Massachusetts, and California, old friends caught up and new friendships were made. Alongside families who had been to many gatherings, were “first-timers” who had never seen another child with CdLS before.

In New York, a new mom and dad had a dozen family members in tow. In Wisconsin, they celebrated a 13th birthday. In Massachusetts, a young woman with CdLS inspired all as she shared her experiences as a college student. And attendees at the California gathering last week were treated to a visit by the man in red himself.

These family get-togethers—which have been going on longer than the Foundation has been around—provide a few hours of laughter, support and advice-swapping. Most importantly, gatherings offer comfort to families who may have thought they were alone.

See some of the magic yourself at our family gathering slideshow.

We hope to see you at a Foundation family gathering in 2007. Until then, we offer you this simple Irish blessing:

May you have warm words on a cold evening,
A full moon on a dark night,
And the road downhill all the way to your door.

We wish your family a peaceful and joyous holiday season and a new year that is filled with hope and love!

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CdLS In the News: This Boy is Not Your Average Kid

The Highberger family of Nebraska really knows how to throw a party. For their son Colt’s 10th birthday bash, several hundred friends and family came together to celebrate Colt and to raise money for the CdLS Foundation. 

 

This is the third year in a row the Highbergers have included local residents in Colt’s birthday celebration. No surprise, Colt is a bit of a celebrity around town these days. Read all about this year’s celebration in the news article This Boy is Not Your Average Kid 

 

Happy birthday Colt!

 

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Meet Deirdre


Deirdre Summa, MSW, joined the CdLS Foundation staff recently as a family service coordinator. She’s here to provide information and personal support to families and caregivers of individuals with CdLS.

Deirdre earned her master’s degree in social work from Springfield College in Massachusetts and completed her internship at the University of Connecticut Health Center, working with high-risk OB patients and in the Hemophilia Clinic. Deirdre has also worked as a domestic abuse community educator.

Welcome to the CdLS family Deirdre!

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