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CTMQ > Family > Smith-Magenis Syndrome

CT Hops for Hope is Back!

July 6, 2017 by Steve 5 Comments

Hoping... Saturday September 2nd at Falcon Field New Britain, Connecticut CT Hops for Hope Buy Tickets! Donate! When I started CTMQ almost 11 years ago, I really had no clue as to what it would become. I just liked writing, traveling, and learning weird stuff about the local places we all take for granted. … [Read more...]

Filed Under: New Post, Non-CT, Smith-Magenis Syndrome Tagged With: Damian, Smith-Magenis Syndrome

The Best Way I Know How to Say…

June 10, 2016 by Steve 3 Comments

... Thank You and Goodbye Have you ever had dozens of people to thank but find the process of thanking them all a bit daunting? That's the position my wife and I are in today. Fortunately, I have this platform on which to do my best. And even though I'm going to try my best, it's still not going to be nearly good … [Read more...]

Filed Under: Family, New Post, Non-CT, Smith-Magenis Syndrome Tagged With: Blog, Calvin, Damian, Family Chronicles, Hoang, Smith-Magenis Syndrome

TSTL’15.9: Macedonia Brook State Park

September 8, 2015 by Steve 2 Comments

The Sky's the Limit 2015 Hiking Challenge #9 Macedonia Brook State Park/Cobble Mountain Kent, June 25, 2015 2019 Update: This page is so bittersweet for me. I LOVE this page so much and swell with pride reading it and looking at the pictures. But now, as Damian enters his teen years, these things just don't, … [Read more...]

Filed Under: Hikes, Bikes & Paddles, Hiking Challenges, New Post, Smith-Magenis Syndrome, State Parks, Reserves, Preserves, Forests, NAPs, WMAs, & Campsites Tagged With: Damian, Great Views, Hikes with my Boys, Kent, Macedonia Brook state park, Sky's the Limit Challenge, Smith-Magenis Syndrome

CTMQ NYT SRSLY?

August 14, 2015 by Steve Leave a Comment

Yeah, SRSLY. And don't give me any of that TL;DR stuff either. Check it out. I must admit, this was pretty cool. … [Read more...]

Filed Under: New Post, Non-CT, Press, Smith-Magenis Syndrome Tagged With: Press, Smith-Magenis Syndrome

Damian in the News

September 21, 2011 by Steve 1 Comment

In September of 2011, we hosted the first SMSRF fundraiser in Canton, CT. Ramping up to the event, we did some press and got a couple nice stories out there about SMS. Here they are: Kim Velsey's story in the Courant about SMS and Damian. This article ran in the town papers all over central CT which had a … [Read more...]

Filed Under: Family, Smith-Magenis Syndrome, The Boys Tagged With: Damian, Smith-Magenis Syndrome

SMS Resources

April 29, 2011 by Steve Leave a Comment

So, you're wondering, how can you help the SMS community? Easy. You can poke around these Damian pages and click on a few links and learn about one of the many rare chromosomal syndromes that exist. (Hey, since MY kid has SMS, that’s the one I happen to care/know about the most.) Also, you can talk to your friends … [Read more...]

Filed Under: Family, Smith-Magenis Syndrome Tagged With: Smith-Magenis Syndrome

August 2010 Update

August 17, 2010 by Steve 12 Comments

Those few of you in my inner circle know how I write pages for CTMQ. I think about what I’m going to write maybe in the car or shower, gather any materials or websites I’ll reference, sit down and type fast. I write them very quickly; never really proofreading or stopping along the way. I may wait a day or two (or … [Read more...]

Filed Under: Family, Smith-Magenis Syndrome, The Boys Tagged With: Damian, Smith-Magenis Syndrome

Essay: It Just Tears Me Up

August 8, 2010 by Steve 3 Comments

Note: I wrote this essay way back in January 2009, pretty much just for the heck of it. I submitted it to Newsweek but only received a "Thanks, but we're changing the format of "My Turn." Good luck." I never did anything with it and totally forgot about it until about 20 minutes ago because I've been feeling guilty … [Read more...]

Filed Under: Family, Smith-Magenis Syndrome, The Boys Tagged With: Blog, Damian, Smith-Magenis Syndrome

SMS in the News

March 28, 2010 by Steve Leave a Comment

Here is a collection of news stories I've found over the years about SMS. Some are good, some are excellent. I urge you to take a few minute to watch and read them. Also note some of the commenters; particularly the ones who claim SMS is "cured" via "better parenting" or "a good pastor." SMS is hard enough to deal with … [Read more...]

Filed Under: Family, Smith-Magenis Syndrome Tagged With: Smith-Magenis Syndrome

April 2009 Update

April 30, 2009 by Steve 12 Comments

Damian Update I have the ability to see where and infer why people come to this blog from various search engines. If I'm in the mood, I can check things like how much time those readers spend on each page. One page that gets a lot of traffic is my page about Damian... Much of it comes from people searching for … [Read more...]

Filed Under: Family, Smith-Magenis Syndrome, The Boys Tagged With: Damian, Family Chronicles, Smith-Magenis Syndrome

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