Congratulations Team CdLS Chicago

Since 2000, Team CdLS has run 26.2 miles through the streets of Chicago, raising awareness of CdLS along the way.
This year, all team members crossed the finish line, inspired by children with CdLS and the work of the CdLS Foundation. To date, this year’s Chicago runners have raised more than $65,000 for the Foundation. That money will go a long way in helping us help families. Thanks Team CdLS!

Team CdLS runners featured in newspaper articles

Click on the links below to read articles about a mom and a sister running in the Chicago Marathon:

Lake County Journal | Big sis runs marathon for sibling.

Uphill battle: Marathon runner takes to pavement for good cause » Evansville Courier & Press.

Conference 2010 Recap

It was an amazing few days – and mom Sandi captured it perfectly in this video. Enjoy.

Team CdLS names Duke City Marathon ambassador

Five-year-old Savannah Fernandez is the 2010 Team CdLS Ambassador for the Duke City Marathon, October 17 in Albuquerque. Savannah will be cheering on 19 Team CdLS members, including her father, Dee. “Running in the Duke City Marathon is something new for Dee, but he is really excited to reach his self goals, and to run in support of the CdLS Foundation,” says Alicia Fernandez, Savannah’s mom.

Savannah was diagnosed with CdLS at 14 months old. When she was born she was not speaking or babbling, she was very small, and had a lot of stomach problems, according to Alicia. “Even though Savannah doesn’t necessarily know what it means to be an ambassador, I think this experience will shine a special light on her, which is very exciting for our family.”

“The CdLS Foundation has helped our family so much with finding information, helping us to provide better care for Savannah, and giving us the emotional support that we needed. Through the Duke City Marathon our family can help educate people about CdLS, and help raise money for the Foundation.”

To learn more about Team CdLS go to http://www.cdlsusa.com/teamcdls/teamcdls_2010_events.shtml.

Bikers in the Twin Cities hit the highway for CdLS

The first-ever Motorcycle Ride for Cornelia de Lange Syndrome (CdLS) is Saturday, June 12, starting at Hitching Post MotorSports in Hopkins, MN. The event was organized by three area families with the hopes of raising $5,000.

Motorcycle ride organizer Dave Viland is grandfather to five-year-old Audrey, who has CdLS. Dave is a vice president of the CdLS Foundation’s board of directors, and all money benefits the Foundation. “Right after we found out about the CdLS Foundation, my wife and I decided that we wanted to be a part of it. When the previous director recognized my background in healthcare and asked me to join the board, I knew that I had to for my daughter and for Audrey,” says Dave.

Dave says he was inspired to start a fundraising event involving a motorcycle ride because he is a biker himself, and he wanted to start a unique event that would bring money to the Foundation. The Watczak and Drach families stepped up to help. Both families have children with the syndrome. “The major resources of revenue for the CdLS Foundation are from donations and fundraising activities. Being a biker myself, I knew motorcyclists do benefit rides all the time, so “why not?” ”

“We want to develop a template for this event for other regions of the country. We hope other bikers will see what we’ve done and want to start a CdLS benefit ride near them. If we can get motorcyclists around the country to get involved, people will be more aware of what CdLS is and want to help as well.”
The motorcycle event begins at 9:30 a.m. with registration and a continental breakfast, followed by the start of the motorcycle ride at 10:30 a.m. There is a mid-point stop and lunch break at 12 p.m. at the Lake Ridge Care and Rehab Center in Buffalo. The ride ends back at Hitching Post Motorsports at 2 p.m., where there will be an awards ceremony, a 50/50 drawing, poker run, and the chance to win prizes.