Tag Archives: Down Syndrome

DSR Episode #25: DS Connect with Lisa Kaeser

The new DS Registry will provide huge opportunities to improve the lives of our children! We had the opportunity to speak with Lisa Kaeser about DS Connect which launched in September.  Just listen to the list of potential benefits that … Continue reading

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DSR Episode #24: DS Achieves with Lito Ramirez

We had the opportunity to speak with Lito Ramirez, founder of Down Syndrome Achieves.  DSA’s mission includes Research and Funding, Political Advocacy and Education.  They have a new initiative called ONE21.  ONE21 seeks to fund the development of a dedicated … Continue reading

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DSR Episode #23: Dr. Kishore Vellody!

Dr. Vellody is the Medical Director of the Down Syndrome Center at the Children’s Hospital of Pittsburgh. This guy REALLY understands the medical issues faced by our children! Because the center that he directs is specialized, he sees an incredible … Continue reading

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DSR Episode #9: The Jérôme Lejeune Foundation

The mission of the Jérôme Lejeune Foundation is a simple and concise summary of the reasons why we started this podcast:  Research, care, advocacy.  Seems like a perfect match! Dr. Jérôme Lejeune was a French pediatrician and geneticist who, in … Continue reading

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DSR Episode #8: Special Olympics

In the short time that we have been recording this podcast, we have always stressed the importance of siblings in our kids’ lives.  In 1962 one sibling raised the bar for brothers and sisters everywhere.  Rosemary Kennedy’s sister believed that … Continue reading

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DSR Episode #7: NDSC Convention Download

Running on fumes and adrenaline, we recap the highlights of the NDSC Convention from a very busy weekend in Washington, DC.  From advocating on Capitol Hill to dancing the night away – with workshops, exhibits, hallway and pool meetings in … Continue reading

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DSR Episode #6: Down Syndrome Daily and NDSC Convention Prep

In the first few installments of this humble podcast, we found ourselves continuously visiting one site for ideas for our “great/amazing/inspirational story” segment.  Down Syndrome Daily is an excellent resource for the Down syndrome community and we are very excited … Continue reading

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DSR Episode #5: D.A.D.S.

A national organization comprised of dads dedicated to supporting the fathers and families of children with Down syndrome?  Heck, it’s even named D.A.D.S!  Sounds like a perfect match for our humble podcast about DS from a dad’s perspective! In just over 10 years, … Continue reading

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DSR Episode #4: Special Needs Advocacy

IEP, IFSP, IDEA, NCLB….WTF?? Did you know that there are trained individuals who will help you decipher the acronyms and navigate the often confusing bureaucracy around special needs services?  Well there are, and these folks are called Special Needs Advocates.  … Continue reading

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Aint Seen Nothing Yet (the song – not a new episode!)

Hey all, This is Mark from Down Syndrome Radio.  Papa Jason and I are planning on recording another episode on Tuesday evening.   In the meantime, I thought I would post the words/audio to the ‘Aint Seen Nothin Yet’ Song that … Continue reading

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DSR Episode #3: Essential DS Resources

There are a ton of resources out there with varying degrees of useful information about Down syndrome.  We break down what we think are the most informative, helpful and enjoyable websites, books, blogs and podcasts (of course)!  See the big … Continue reading

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DSR Episode #2: Telling Family and Friends / Common Medical Conditions

You may be thinking….two topics?!?!  Why not?  Yes, we attempt to tackle two topics in this episode. The second half of this episode picks up where we left off in Episode #1.  After we received the news, how did we … Continue reading

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DSR Episode #1: Getting the News

Welcome to the inaugural episode of Down Syndrome Radio by the Down Right Awesome Dads, Mark and Jason.  In this episode, we introduce ourselves and share our stories about receiving the diagnosis. Being informed that your newborn or in utero … Continue reading

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Introducing Down Syndrome Radio!

First, let me introduce myself.  I am Jason, father of the cute little guy floating over Times Square in the logo above.  Up until now this space was mostly filled with the wonderful musings of my lovely wife, Colette.  I … Continue reading

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Adding My Voice

From the moment Milo was born and diagnosed, I’ve been writing to you all. Figuratively, that is. I’ve wanted to release my words out there and let them find a home where they may. I’ve wanted to produce documentaries to … Continue reading

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Big Apple, I’m After Your Core

To New York City I fly The polar opposite appeals Rerun my day, I won’t I prefer to clear the board Live the story of the now Forgive me, then Concrete, fast streets Live up to your promise Fill me, … Continue reading

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One Day I Pondered…

It was a spring day in San Diego. I took Dexter, a few months old, to Balboa Park seeking sun and solace. Not too far from the grand fountain I pitched his play gym on a strip of green grass … Continue reading

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Sibling Revelry

You never know how a child will react to the arrival of a sibling. Very quickly we learned that Eloise, our 3-year-old, would be serial squeezer. I think we’ve said “not so tight” over one thousand times to date. As … Continue reading

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Chutes & Spirit Lifting Ladders

When I was on KPBS Midday Edition with Maureen Cavanaugh I mentioned my experience with Down syndrome being a bit like Chutes & Ladders. If you don’t know the game it goes a little like this. Some moves can send … Continue reading

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Thanks & Giving

Around the table each year we take a moment to share what we are most thankful for. This year my reply will be family & friends, both old and new. I’ve always heard that you should count your friends during … Continue reading

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Man Your Posts!

Blogging is hard mostly because you need to keep up with the regular post part. I promise I will try to get one up every week and do a better job manning the post! Okay so I intended a Whale … Continue reading

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Team DownRightAwesome: San Diego Buddy Walk 2011.

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Action, Down Right Awesome Reaction!

Signs don’t hoist themselves into the air. Donations don’t just appear. And at last check, shirts can’t wear themselves either. Point is, it takes you, and without your support last weekend’s highly successful event would never have been possible. Thank … Continue reading

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KPBS Podcasts.

October 17th Monday: We’ll hear from parents, discover available resources, find out why advocacy is so important and look at clinical trials underway right here in San Diego. Joined by San Diego parent Colette Cosky who learned her eight-month-old son … Continue reading

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It’s Series Time, Make Sure You Tune In!

Down Right Awesome has been working with KPBS to create a 4-part series on Down syndrome. It will air live this Monday through Thursday, October 17 – 20, on Midday Edition with Maureen Cavanaugh. I will open the series on … Continue reading

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The Big Day Bulletin

Buddy Walk 2011 Info We can’t believe the walk is just a few short days away and that over 70 people are expected to join our team! Above are all the details you’ll need for the big day. There will … Continue reading

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Sweet T’s

I thought about holding off on this post since the shirts have not yet arrived on our doorstep. I am taking a chance though in hopes of enticing some more folks to sign-up with this sweet T. Pretty cool huh? … Continue reading

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Signs of Support, Sign of Friendship

The Buddy Walk is almost here and we’re getting ready. This is our first time participating and I am sure it will be a very emotional day for us. In fact, when I heard the Euphoria Brass Band play a … Continue reading

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It’s Down Right Awesome™

Down Right Awesome™ was created for Dexter & Milo; two awesome boys with a lot of potential that happen to have Down syndrome. Here, on our social spaces and in other cool places, we gather with our ever-growing group of … Continue reading

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