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.
New Year, New Reaching Out
It's time for the year's first issue of Reaching Out. There's tons of information packed into this issue - and four more pages! Reaching Out has taken a leap from its usual 16 pages to 20 pages of news, information and photos. In this issue, our two main articles focus on causes of death and dental issues. The cause of death article has been years in the making. After compiling data from families, medical records,...
Foundation Awarded 4-Star Rating
Charity Navigator recently awarded the CdLS Foundation with a 4-star rating! Charity Navigator bases this rating on sound fiscal management and commitment to accountability and transparency, important aspects of any organization. This four out of four star rating is awarded to only one quarter of US charities, validating the hard work the staff and board put into the Foundation on a daily basis. We are very proud of this news, and will be displaying this...
Inspiration
A few weeks ago, we received a video from the 2010 conference in Dallas. I finally watched it today and was amazed at what I saw. Valerie, a 32-year-old woman with CdLS, gave a speech about how she works towards reaching her goals. She talked about becoming independent: working, volunteering, and living on her own. All of these accomplishments had given her the confidence she needed to make friends and travel, and I assume, the...
Two big races, one big cause
Marathons are a great way to raise money for a cause, and Team CdLS has taken this idea to heart. This year, Team CdLS is participating in two of the world's most famous marathons: the Bank of America Chicago Marathon on October 9, and the ING New York City Marathon on November 6. Dozens of people have joined Team CdLS for the chance to raise funds and awareness for CdLS. Runners come from all over the U.S....
Athletes go the distance--short and long--this weekend for the Foundation
This Saturday, July 9, two events take place to benefit the Cornelia de Lange Syndrome Foundation. The first is the Life Time Fitness Triathlon in Minneapolis, MN. "We Three for Audrey" is a group of three athletes who are racing to raise money for the CdLS Foundation. The triathlon team consists of Heather Carlson of Robbinsdale, MN, Destiny Kuykendall of Woodbury, MN, and David Viland of Bloomington, MN, grandfather to six-year-old Audrey, who has CdLS....
Three new faces at the Foundation office
The CdLS Foundation has recently gained three new members to the team. We would like to welcome our new communications coordinator, Francesca Scognamiglio, and our two summer interns, Ciara Duggan and Alicia Mangiasico. Francesca graduated from Ringling College of Art and Design in Sarasota, FL, with a BFA in Graphic Interactive Communications. After spending some time in working in retail, she is now the part time communications coordinator for the CdLS Foundation. Ciara, a junior...
Team CdLS Ambassadors Named for 2011 Marathons
Team CdLS ambassadors have been named for the marathons taking place in Chicago, IL, Baltimore, MD, and New York City, NY, this year. The ambassadors are individuals who have Cornelia de Lange Syndrome and act as representatives for Team CdLS in their specific locations. Breeze Davis, 7, is the ambassador for the Bank of America Chicago Marathon. Breeze is from Downers Grove, IL, and was diagnosed with CdLS at age three. She loves going to...
Cross-country motorcyle trek nearing the end
Ken Fouts is now on his sixteenth day of Adrian's Ride, a cross-country motorcycle ride to raise money for the CdLS foundation. The ride is in honor of his 17-year-old grandson, Adrian. Today, Day 16, Fouts is traveling through the mountains of Colorado on his way to Utah, and has had quite a journey so far. He has traveled through more than 18 states and is just hoping for good weather to guide the rest...
Grandfather sets off on cross-country motorcycle ride in honor of his grandson and others with CdLS
What would make a 70-year-old Ohio man ride his Harley 3,800 miles across America? Simple: To help his grandson and other children born with Cornelia de Lange Syndrome (CdLS).Ken Fouts, a retired Emmy award winning sports director, loves his 2008 Harley-Davidson Softail Heritage and his 16-year-old grandson, Adrian, so what better way to honor both than by riding across the country this spring. Adrian's Ride 2011 aims to raise money for the national CdLS Foundation...
Team CdLS debuts in the Baltimore Running Festival
Team CdLS make its debut in the Baltimore Running Festival, October 15, 2011. Join the CdLS Foundation's Medical Director Antonie "Tonie" Kline, M.D., in the half marathon, or register to participate in the full marathon, marathon relay team (up to four people), or 5K. Team CdLS runner amenities include:• Weekly training guides sent via email from our experienced running coach• Team CdLS singlet and goodie bag• Organized runs in the Baltimore area during training• ...
