Monthly Archives: November 2007

Live from Boston …

I’m writing today from the American Speech-Language-Hearing Association (ASHA) convention in Boston. Thousands upon thousands of speech-language pathologists (SLPs), professors and students have all descended on the Boston Convention Center for this annual event.Issues with speech and language are universal among individuals with CdLS, regardless if they are mildly or severely affected. As part of the Foundation’s outreach to these professionals, I’ve set up a booth here, loaded with information about CdLS.

The response has been pretty amazing. I’ve met many SLPs who, after looking at our materials and display, are convinced that they are working with a child with the syndrome, but without a diagnosis. That’s what it’s all about – educating people who work on the front lines so that they can help find the thousands of individuals who are undiagnosed.

I’ve also met SLPs who have recently begun working with a child with the syndrome. They are grateful for the information and assistance the Foundation can provide them and the families.

Of course, there were plenty of folks who have never heard of CdLS until they came by the booth, stopped in their tracks by the larger than life photos of two children with CdLS looking out at them from the display. They can now file this newfound awareness in their brains, and when that little boy or girl with the long eyelashes and upturned nose walks into their clinic or school, they’ll remember CdLS. -MM


Leave a comment

Filed under CdLS, Foundation News

Couple takes CdLS awareness to the streets–on a three-wheeler

Barbara and Mickey G. of Texas are pretty amazing folks. One would think that as they enter their “golden years,” there would be travel, reading, taking up new hobbies, etc. Instead, they have opened their home to 22-year-old Jeremiah C., who has CdLS.

For almost a decade, the couple has provided respite care for Jeremiah’s family. Recently they became his full-time caregivers. “We feel fortunate that we have a chance to maybe make a difference in his life. This was so unique and unexpected. We didn’t go out and say ‘We have an empty nest, we need to fill it.’ The way things happened, it just evolved. … He’s our life now,” Barbara said in a newspaper article earlier this year.

In August the threesome signed up for the annual Hotter’N Hell Hundred, a bike ride in Wichita Falls, TX.   Here is a firsthand account of their journey, in Jeremiah’s eyes (“Although he is non-verbal, we are sure the words are from him,” Barbara says):             

For as long as I have known Barb and Mick, they have talked about their days of riding in the prestigious Hotter’N Hell Hundred bicycle ride. Since I have come to live with them, I thought that I should have the opportunity to experience all the excitement and to participate in this year’s ride. 

Mick found a great three-wheeled bike with two seats on the back—a Worksman Chariot. When it arrived, we were surprised at how big and heavy it was. Soon it was known as the “Tank.” It didn’t take long to realize that I would be the only person lean enough to get to ride in the seat. Oh, well, I like the room. We practiced up and down our country road.


The HH100 hosts more than 11,000 riders and twice that many of their friends and family come along for the event—a perfect chance for CdLS awareness. We put a CdLS poster on the back of the Worksman Chariot and loaded up some CdLS material to hand out. Yes, sir, we were ready. 

Morning came. To my chagrin, no one had informed me we had to get up before dawn to be at the race start by 7 a.m.  I just kept on sleeping until I had to load onto the bike. We took our starting position behind 11,000 riders, who were attempting the various lengths of distances for the ride. I looked around and, in addition to the thousands of regular bicycles, saw there were parents with their kids in bicycle baby seats and carts. There were some people on roller blades and kids on little bicycles. I noticed a man riding the 10K distance in his wheelchair and several elderly senior citizens in the pack. There I was in my cool Chariot with Barb pedaling and Mick alongside on his old bike for support.


We were off and moving within 20 minutes. People were standing along the sides clapping and cheering us on.  We got many special waves and shout-outs due to our unusual transportation and our CdLS sign. What a good feeling!  However, nobody had warned us about the overpass. It used to be a slight rise in the street but now it was miles high—an alpine of the highest magnitude! We started the climb. Soon I noticed we were barely moving as Barb was gasping for breath and looking for lower gears. Toddlers were passing us on their tiny Barbie and Spiderman bikes. Barb muttered something about pedaling a snail. Mick encouraged us on and somehow we made it to the crest of the “mountain” and down the other side. Thank the Lord for the down side of hills!

We traveled through the downtown streets until we were to cross over a suspended bridge to the park trails.  The Chariot was too wide to cross on the bridge. Mick took over pedaling the tank, while Barb regained her strength and caught her breath riding on Mick’s bike. Since we are locals, Mick knew a way through the neighborhoods into an empty parking lot and down a grassy incline that took us right back to the park trails, where the 10K riders were riding.

On this detour, the neighborhood folk were able to get a good look at the CdLS poster and took some materials. I saw many people I knew and had the opportunity to have short visits along the way. I also decided I had had enough of my helmet and took it off as often as it was put back on.  Then Barb took over the pedaling again as we neared the finish line (she wanted the glory). We were almost there! As we neared the finish line, the people along the sides were clapping and cheering us on. What a good feeling! The announcer was talking about us!  Now I felt like royalty on the back of that Chariot. We got lots of attention.


After crossing the finish line, I got my participant pin and my picture taken. Then we stopped at the final rest stop to eat fruit and drink juice and to stand in the spray mist.  It was a fantastic ride! We would like to invite everyone to the Ride next year. We can all ride in support of the CdLS Foundation and for CdLS awareness.  In the mean time, I will be tuning my “engines” and maybe looking for a faster ride!  For more information on the ride, visit             



Filed under CdLS

CdLS research (for the non-scientists among us)

If you want to know what fruit flies, zebrafish and mice have to do with helping people with CdLS, we’ve got just the place for you. Visitors to the CdLS Foundation web site can now view summaries of CdLS and CdLS-related research articles—written in layman’s terms, for the most part. This new Research Articles page is a meaningful connection to scientific research information that is relevant to our mission.

For copyright reasons, we cannot post entire articles. The summaries offer a glimpse of the article, as well as information about where to get the complete version, should one want to read it more depth.

More article summaries will be posted in the coming weeks (and in the future as they become available). Check it out today. –MM 

Leave a comment

Filed under Foundation News, Research News & Updates