Monthly Archives: May 2007

Hiker Jim: 1,500 more miles to go for CdLS

Just a quick update on Hiker Jim, the Georgia man walking the Appalachian Trail raising awareness and money for the Foundation along the way (more than $1,000 to date).

 

Jim started his journey—dubbed Walk for Alley in honor of a little girl with CdLS in his hometown—in February. He had a string of bad luck at first and had to leave the trail twice for family emergencies. But, Jim didn’t give up on his dream. He is currently making his way through Virginia, having gone more than a quarter of the 2,175-mile trail, which goes from Georgia to Maine. In the process, he’s done a great job of spreading the word about CdLS. Here’s a heartwarming story from one of his trail log entries:

 

11 March 2007: “I arose early and requested a shuttle from Tina, theFontana Village Shuttle Driver the next morning at 7. Because of the Daylight Savings time change that evening, I was 10 minutes late for my shuttle ride and had to wait until 7:20 for a pickup. I am sometimes amazed how things work out and this is just such a situation. When I got in the van and loaded my pack and staff, Tina noticed my “Walking for Alley” shirt and asked about it. I told her about Cornelia de Lange Syndrome and its effects on children. As I did this, Tina reached for her tip cup and handed me all the money she had collected that morning for her shuttle services. She said that she had a daughter who was afflicted with another rare childhood disease and understood what CdLS families were experiencing. I graciously accepted her gift and told her that it would be much appreciated by the Foundation in Connecticut.  I was humbled by this wonderful lady’s generosity and her willingness to give what little she had to the cause. It also raised my spirits that day and carried me across the Fontana Dam into my first day in the Great Smokey Mountain National Park that day”.

Safe travels Jim. -MM

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CdLS Awareness Day: A time to come together

CdLS Awareness Day was celebrated around the country this past Saturday. From California to Maine to Florida, families set up CdLS displays outside stores, hung fliers in coffee shops and did a range of activities to spread awareness of CdLS. One dad even set up a DVD player on the counter of the busy gas station where he works and played the Find One Child video over and over.

Here in Connecticut, we held our first-ever Awareness Day Picnic. More than 120 friends and families from New England and New York gathered at a local park on the picture-perfect spring day. US Rep. Chris Murphy, who has been a champion for people with disabilities at the state level and is serving his first term in Congress, stopped by to say hello and meet some of his constituents.

For some families, the gathering was their very first encounter with other children with CdLS. From my perspective, it was amazing to watch their comfort level change throughout the day from nervous and scared, to relaxed and laughing. That’s what the Foundation is all about – bringing families together so they know they are never alone. And it’s so gratifying to see that in action.—MM

PS – Be sure to check out some of the great news articles featuring families and CdLS Awareness Day.

 

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US Rep. Chris Murphy with Mary Beth Bruder of UCONN (center) and Julie Mairano, the Foundation’s executive director, at the Awareness Day picnic in Connecticut.

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Foundation staffers (l-r) me, Janette and Lynn at the CT picnic. (And no, we did not plan to dress alike.)

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Enjoying the playground at the CT picnic.

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Filed under CdLS Events, Foundation News