Category Archives: Fundraising

Making a giant impression …

We’re excited about the first-ever CdLS billboard. Drivers on State Street in Lemoyne, PA, are passing by a larger-than-life photo of Hannah, an area girl with CdLS who is the inspiration behind a Zumbathon to raise money for the CdLS Foundation. The event takes place December 5, from 2 – 4 p.m. at Art in Motion Fitness in Lemoyne.

A big thanks to Lamar Advertising of Harrisburg who provided the billboard pro-bono to the event organizers. For information on the Zumbathon, email events@CdLSusa.org.

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Team CdLS debuts at NYC Marathon

For the first time, Team CdLS is represented in the ING New York City Marathon, taking place November 7. The team is a participating member of the New York Road Runners Community Charity Program.

Among the 10 team members are five parents, one sibling, one relative and three friends of children with CdLS. Two ofthe runners— Beth Smisloff of Ballston Spa, NY, and David Fowler of New York, NY—just completed the Chicago Marathon October 10 as part of Team CdLS.

Smisloff and Fowler will be joined in New York City by Liana Davila of Dobbs Ferry, NY; Carol Campbell of San Francisco, CA; Lori Griffin of Newtown, CT; Hunter Jackson of Salt Lake City, UT; Katharine Gill Law of New York, NY; Susan Leone of Hawthorne, NY; Peter Uzzi of Avon, CT; and Amanda Woodall Lexington, KY.

The team’s goal is to raise $25,000. So far this year, Team CdLS has raised more than $130,000 in races in Manhattan Beach, CA, Philadelphia, PA, Albuquerque, NM, and Chicago, IL. All money raised by Team CdLS goes to the CdLS Foundation in support of its program and services for individuals with CdLS and their families.

Donations to Team CdLS can be online at https://www.cdlsusa.org/secure/donation.asp or by calling 800-753-2357.

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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!

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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.

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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.

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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.

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Hoof-it 4 Hunter is June 12

Third annual walk aids children with rare genetic disease
By Angeljean Chiaramida, Staff writer, Daily News of Newburyport

The family of a Seabrook boy stricken by a little-known genetic disease is gearing up for an annual two-mile walk to raise money and awareness to help others dealing with the effects of Cornelia de Lange Syndrome.

The Hoof-it 4 Hunter walk — named for 4-year-old Hunter Knowles — is set for Saturday, June 12, starting at 11 a.m. at Seabrook Elementary School on Walton Road, with proceeds to benefit the Cornelia de Lange Syndrome Foundation.

Hunter’s parents, Marcia and Jason Knowles, knew something was wrong with their sweet, loving child when he failed to gain weight and progress similarly to their other children. But it took dozens of doctors visits before Hunter was diagnosed at 21 months old with Cornelia de Lange Syndrome. Only then were his parents able to deal with the disease, make appropriate decisions and plan intervention therapies for his wellbeing.

Now a student in the special education preschool at Seabrook Elementary School, Hunter is doing well, his mother said.

“He’s started to talk. At school, he’s learning his numbers, his colors, his alphabet and he’s developing social skills,” Marcia Knowles said. “We’re so proud of him. He’s the best miracle for our family. He’s taught us so much.”

The Knowles family started the Hoof-it 4 Hunter walk three years ago, raising $6,000 the first year and $3,000 last year, even during a bad economy.

In addition to the walk, the Knowles family will be attending the CdLS Foundation conference in Texas next month. Marcia Knowles will be one of the conference speakers, perhaps supporting other parents who have children with the syndrome.

“The first two years of the walk, our main goal was to spread awareness,” Marcia Knowles said. “But, this year we’re hoping to raise more money, and all of it goes to the CdLS Foundation, since there’s such a lack of funds for this syndrome because it’s so rare. Many doctors still don’t know about it.”

• • •
To get involved in the Hoof-it 4 Hunter 2-mile walk, contact the Knowles family at 603-474-1966.

About Cornelia de Lange Syndrome

Named in 1933 for Dutch pediatrician Dr. Cornelia de Lange, who first noticed the similarity of symptoms in two of her patients, CdLS is a congenital syndrome, meaning it is present from birth. But CdLS is not considered a hereditary disease.

Caused by a genetic mutation or abnormality of one or more specific genes identified by researchers, experts believe CdLS may affect one in every 10,000 births. The exact number of cases, however, is unclear.

Symptoms can range from mild to severe, but there are physical characteristics CdLS sufferers share, although all do not need to be present. The characteristics include birth weight under 5 pounds; slow growth; small body, head, hands and feet; thin eyebrows; long eyelashes; short, upturned nose; cleft palate; thin, down-turned lips; excessive body hair; acid reflux; seizures; heart defects; bowel abnormalities; feeding difficulties; developmental delays, including speech; and finger, toe and limb abnormalities, including missing limbs.

With therapy and treatment, most children with CdLS can live into adulthood. However, left undiagnosed and untreated, heart, gastric and bowel abnormalities can threaten life.

Those who suspect their child may have CdLS should seek an evaluation by a genetic specialist.

For more on Cornelia de Lange Syndrome, visit http://www.cdlsusa.org.

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