Down Right Awesome

Please be patient.

coletteg — Tue, 09 Apr 2013 07:36:48 +0000

Sadly, there are those who maliciously seek out to destroy websites that may have a security hole in them. Unfortunately, hackers were able to get into the Down Right Awesome website, and hack it and begin spamming from the site. This resulted in corrupt databases that needed to be deleted. Attempts to restore older versions of the database have failed, and we’re looking to slowly rebuild the site back up. Thank you for your patience and understanding.

- Team DownRightAwesome

UPDATE: We have made some progress and managed to restore the data from all the way from the beginning to October 17th, 2012. We’re still working on other portions of the site to restore it back to the Awesome that it was before! Thanks for being patient with us!

One Mom’s Wish For Her Son With Down Syndrome

coletteg — Thu, 21 Mar 2013 05:02:34 +0000

Our very own Down Right Awesome mama gives her take on why research is so important to us. Please read, share and don’t forget to donate to Down Syndrome Research and Treatment Foundation- DSRTF today to take advantage of the 3-to-1 matching!!

To help honor World Down Syndrome Day, we asked Colette Cosky, a mother of two and a marketing executive in San Diego, to share her thoughts. After her son was born with Down syndrome, she founded the organization Down Right Awesome and helps raise awareness and support for Down syndrome research.

One Mom’s Wish For Her Son With Down Syndrome

Thursday, March 21st, 2013

For me, World Down Syndrome Day is an opportunity to broaden everyone’s perception of Down syndrome by seeing it through the eyes of the families who live it. I’m one of those families; my 2-year-old son, Dexter, has Down syndrome. (There we are, in the collage.) While we all have some things in common, no experience is the same and not everyone shares the same passions or beliefs. My passion is my commitment to cognitive preservation because Dexter, like all children with Down syndrome, is predisposed to early-onset Alzheimer’s disease. Here’s what I want other families to understand.

As I live my life, the pages of my mental scrapbook are filled with really big moments, with scents that take me to specific places in time, and with faces of those who’ve left my life in one way or another. It’s here I can visit my 4-year-old Eloise back when she was 2, or my Nana, who passed just a year ago. I can go to those memories at any time to rewind, re-live, and re-love.

In the early days of my experience with Down syndrome, I was consumed with all the things I thought Dexter couldn’t or wouldn’t do. Now that’s not the case. I think the only time I get anxious or sad is when society pulls out its standardized ruler and judges my son. Like now, as we search for a preschool, the experience is not the same as when we looked for our daughter. Without even meeting my son, people give us gentle letdowns explaining how the school can’t handle Down syndrome. But if they’d only put the person first, we know they’d see a kid who loves to be with others, who is fascinated by books, and who is eager to learn new things.

But when that standardized ruler is away, the family will play. Our kids are a crackup and seeing them together gives us great joy. Though Dexter is not walking yet, he certainly gets around. In fact, he and his big sis have devised a new game called “toss the fruit and get it.” Then they both go off in a mad-dash army crawl to get the faux fruit they’ve flung across the living room. Their giggles are infectious. I’m certain I’ll have the same smile on my face when I recollect this a long time from now.

I am also positive that I’ll keep with me the memories of our Buddy Walk teams and how I cried tears of joy (and release) the first time our team stepped out to the sweet sounds of a New Orleans-style second line band. Surrounded by our amazing friends, both old and new, we’ve made a tradition of parading in style through San Diego’s Balboa Park, waving signs and twirling hankies – this year we even added parasols!

With these grand memories will also be simpler moments, like when Dexter strings words and signs together to say “Mama, I want more hugs.” This one currently melts me.

Even the bitter memories have a place and purpose. Two years later, recalling the time surrounding the birth of Dexter is painful. I was caught off-guard by the words Down syndrome, given a false sense of security by 55,000-in-1 odds against it, and I had a less-than-desirable hospital experience. Though I often feel guilty for feeling great sadness at his birth, I know I can’t change it. But I can use it as a marker to see how much things have improved–something I never thought possible at the time.

To lose this scrapbook of memories, to lose the ability to go back in my mind and pick a page, would be unimaginable. I wouldn’t wish it on anyone and I certainly don’t want it to happen later in life to Dexter. I believe he’ll always want to look back on moments that made an impact on his life. I just can’t let them be taken from him, and it’s why I care so deeply about cognitive research.

So I started an organization with my husband and friends called Down Right Awesome®. We use our forum to share and advocate for cognitive research, and to also promote inclusion for individuals with Down syndrome on our blog, Facebook, and Twitter. If you’d like to learn more about the early onset of Alzheimer’s in individuals with Down syndrome please visit Down Syndrome Research and Treatment Foundation. In addition to Alzheimer’s research, DSRTF is also exploring ways to improve the overall cognitive ability of individuals with Down syndrome. And to help support DSRTF’s research you can donate directly on the site, or by purchasing a Down Right Awesome t-shirt on our site. All proceeds from shirt sales go to support DSRTF research.

By supporting research now, I hope that I can help Dexter in the future. His mind and thoughts hold no less value than yours or mine. They’re his to keep and, as his Mama, they’re mine to protect.

We got the band back together for a quick roundup of events happening in celebration of World Down Syndrome Day on 3/21.

coletteg — Wed, 20 Mar 2013 05:04:31 +0000

We got the band back together for a quick roundup of events happening in celebration of World Down Syndrome Day on 3/21. Much like the podcast, this write up is going to be short and sweet.

To celebrate, you can:

Attend (either in person or virtually) the World Down Syndrome Day Conference at the UN in New York. Our tireless superhuman cohort, Rick, and his amazing daughter, Kayla, will be there.
This year’s conference theme is “Right To Work”. Check out this awesome video and share it in all of your social spaces.
Wear lots of socks to get people talking and raise awareness for Down syndrome.
Learn about the research programs and clinical trials in the DS Cognition Research 101: An Introduction webinar put on by DSRTF.
Support cognition research by donating to DSRTF and have your donation matched three to one. Only on March 21, your $100 donation becomes $400 in celebration of World Down Syndrome Day!!
Do something in your local community. There are tons of events happening all across the globe!
Lobby Google to use the World Down Syndrome Day Google Doodle on March 21st.
Get the word out to all of your friends through your social media connections.
Keep an eye on Parents.com for a guest post by someone you may recognize. :)

Most of all, make your voice heard. The best way to raise awareness is to celebrate the people in your life who have Down syndrome. Show the world what it means and how people with Down syndrome play a vital role in our communities.

Happy World Down Syndrome Day!

Download Down Syndrome Radio, Episode #19.
Better yet…subscribe, rate us and leave a comment on iTunes!

Episode #13: Everybody Plays with Kelle Hampton and Colette Cosky

coletteg — Wed, 17 Oct 2012 13:24:17 +0000

There is something special going on here in San Diego this week. The seeds for true inclusion are being sown. These kids may think they are just playing with some cool toys in a really nice house, but they will be the models for a nationwide advertising campaign that showcases children of all abilities playing together.

Images from day 1 of Everybody Plays. Some images courtesy of Kelle Hampton.

Everybody Plays is the brainchild of Colette Cosky, Infantino marketing whiz, driving force behind Down Right Awesome, Dexter’s super mama and my amazing wife. Through a little bit of magic, Colette recruited the amazing photographer, blogger and bestselling author, Kelle Hampton, to join the project and turn it into a reality.

As parents of children with special needs, we see our kids playing at the park or with their siblings on a daily basis. We observe that all kids play together without any bias. This campaign by Infantino and Step2 will bring this vision to the shelves and screens of the world to show them what we already know. Everybody plays.

Download Down Syndrome Radio, Episode #13.
Better yet…subscribe, rate us and leave a comment on iTunes!

Episode #12: Chip Gerhardt and the Buddy Walk

coletteg — Wed, 03 Oct 2012 17:12:19 +0000

October is National Down Syndrome Awareness month and we kick it off with a bang. We are very pleased to welcome Chip Gerhardt, Chairman of the Board of the National Down Syndrome Society (NDSS) to the show. Chip is a down right awesome dad of three. His daughter, Anne, is a freshman in high school and has Down syndrome.

Chip and Anne

Not only is October DS Awareness month, it is also the heart of Buddy Walk season! Chip is a Buddy Walk veteran and leader of Cincinnati’s super team “Annie’s Army”. He gives us some history and facts about the Buddy Walk, offers up some suggestions for “donor fatigue” and ways to make your team have an even bigger impact – invite your local politicians. He also gives us some information on what the funds raised during the Buddy Walk are used for.

Before we hit the Buddy Walk topic, Chip tells us his story of getting involved locally and how that grew into his appointment to the Board of Directors of the NDSS. Always the advocate, Chip goes into his full pitch pulling for the ABLE Act before we bring it back around to the topic at hand. Since I feel bad that we curtailed Chip when he was on a roll, the ABLE Act is totally awesome and you should contact your members of congress and have them co-sponsor it.

Rick from Down Syndrome Daily takes time out of his busy schedule and provides us with his great story of the week. Congratulations to Rick, Amy and Kayla on welcoming little Logan to their family!

Our closing song is none other than Whoopin’ Blues by the very awesome Euphoria Brass Band. Last year, we came up with this wild idea of shaking things up a bit by turning our Buddy Walk into a New Orleans style Second Line. After a bit of Googling and without knowing anyone in the band, I cold-emailed EBB to see if they would be interested in leading our team. Almost immediately, they responded with a resounding “Heck Yeah!” We are so excited that they will be leading us again this year. Buy their album, “like” them on Facebook and do whatever you can to make these amazing people successful – they deserve it.

Please consider donating to Dexter’s Buddy Walk team, Team Down Right Awesome or to Luke’s Step UP for Down Syndrome team, Luke’s Looney Tunes.

Download Down Syndrome Radio, Episode #12.
Better yet…subscribe, rate us and leave a comment on iTunes!

This is me, asking you, to take my hand and help me make this real.

coletteg — Wed, 26 Sep 2012 16:50:27 +0000

Guest Blogger Tawmis Logue had some things to share about how Dexter changed his life:

The Down Syndrome Buddy Walk is just around the corner – and Team Down Right Awesome is ready to march! Would love if you could come by, either walk with us, cheer us on, or just think of us while we do the walk!

When Dexter was born, my life was changed. And he’s not even MY son. He’s the son of Jason and Colette Cosky, whom I love very much. But when Dexter entered my life, it definitely changed. I suddenly wanted to fight for a better tomorrow. Not just for myself, but for Dexter. I wanted him to be able to achieve every dream he could muster; I wanted him to walk in a world without any limitations or prejudice.

When I signed up for the Buddy Walk Last year, it was all about Dexter for me. I swore I would use every resource, and medium, and whatever it took to ensure Dexter got everything he ever wanted out of life. But as I did the walk, I saw others with Down Syndrome and suddenly realized – I wanted them all to have the life they deserved. A life without limits. A life… Full of Hope.

This is me, asking you, to take my hand and help me make this real.

Tawmis also shared this poem on the Down Right Awesome Facebook Page:

Note: Tawmis Logue is the writer and creator of Neverending Nights where this blog first appeared.

Episode #11: Dana Halle and The Learning Program!

coletteg — Mon, 17 Sep 2012 17:44:54 +0000

Dana Halle has made HUGE contributions to the Down Syndrome community over the years. She co-founded the Down Syndrome Foundation of Orange County many years back and more recently, she developed ‘The Learning Program’ which is accelerating education for people with Down Syndrome across the country.

The Learning Program complements traditional education by adding teaching techniques designed to work best for folks with Down Syndrome. It uses current research to maximize learning in both literacy and math. DSFOC started this program in Orange County, California, but they have shared it with other organizations and now serve families across the USA. The have also made the curriculum materials available for free (along with the teaching techniques) available on their website.

We also talked to Dana about her wonderful family and how she ‘got involved’. We share an ‘aint seen nothing yet’ moment when we all talk about how the outlook for children with Down Syndrome is better than it ever has been! Good times!

She also shared her favorite apps with us. Hard to pick of course, but she mentioned:

Mark mentioned medical research when he shouldn’t have and that led to a serious warning: Developmental research and medical research are completely different!

We have talked about research into pharmaceuticals before and our hopes remain high. However, such a drug would never make teaching unnecessary! A drug might improve the function of the brain, but you still need to fill it up! Better teaching techniques do that. And the better we teach them, the more they will learn.

No story of the week from Rick and it is all Mark’s fault! We do have moments though and a great closing song. Give us a listen!

Download Down Syndrome Radio, Episode #11.
Better yet…subscribe, rate us and leave a comment on iTunes!

Mark

DSR Episode #10: Apptastic!

coletteg — Thu, 06 Sep 2012 06:55:49 +0000

Rick from Down Syndrome Daily joins us again to talk apps. In typical dad fashion, we quickly take a turn for the worse and venture off topic. After trading bodily fluid stories, we get back on track and discuss our favorite apps, Rick’s upcoming baby and Luke’s birthday!

Let’s skip the verbage and get straight to pictures of our ridiculously cute kids, along with links for our favorite apps.

Happy Birthday Super Luke!

Here are some very useful apps for our littlest ones just learning to point and use their fingers:

Fluidity
Baby Finger
Kid Fireworks
Baby Sign and Learn (this one is more for us forgetful dads who can never remember all of the signs)

Kayla strutting into first grade.

Great and fun apps to help our preschoolers learn basic concepts:

Dexter and his huggable cuteness.

I am old school and definitely still prefer a real book. However, even “book” apps like Dr. Seuss’ Book Collection provide interaction and are much more portable than lugging around a bunch of books.

Our great story this week is actually a short little video that will make you smile. Just check it out.

Finally, for the folks in Southern California, be sure to submit your pictures for Infantino and Step2′s Everybody Plays casting call! This is an excellent chance to get your cutie in the spotlight and to meet the super awesome Kelle Hampton!

Download Down Syndrome Radio, Episode #10.
Better yet…subscribe, rate us and leave a comment on iTunes!

DSR Episode #9: The Jérôme Lejeune Foundation

coletteg — Wed, 15 Aug 2012 07:07:20 +0000

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

Dr. Jérôme Lejeune was a French pediatrician and geneticist who, in 1958, discovered the link between Down syndrome and the extra copy of the 21^st chromosome. He was a fierce advocate for research and dedicated himself to finding treatments for Down syndrome and other intellectual disabilities. His family established the Fondation Jérôme Lejeune in Paris to continue his research after his death in 1994.

Mark and some of the folks from the French foundation, including Mrs. Lejeune.

Our guest on this episode of the podcast is Mark Bradford, President of the Jérôme Lejeune Foundation, USA. I had the pleasure of meeting Mark at the kickoff event for the Race Across America. He is the Down Right Awesome Dad of seven children. We probably could have spent the entire hour discussing how one handles seven kids, but the work being done by the Lejeune Foundation is so interesting we’ll have to save that topic for another show. Mark gives us some history of Dr. Lejeune and the foundation that bears his name. We also discuss how the foundation strives to achieve the three fundamental points of its mission.

Clockwise: Mark and his family, Mark’s sons Thomas and William and Thomas (left) and a friend at school.

Rick from Down Syndrome Daily joins us again for our story of the week. This week, we hear the story of Mark Stanganelli. In a ridiculous move caused by budget cuts, Mark was fired from his $12 per week job. He was later reinstated and, when his story broke, received many other offers from generous folks out there.

Download Down Syndrome Radio, Episode #9.
Better yet…subscribe, rate us and leave a comment on iTunes!

DSR Episode #8: Special Olympics

coletteg — Mon, 06 Aug 2012 07:21:20 +0000

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 people with intellectual disabilities should be given the same opportunities as everyone else. With that vision, Eunice Kennedy Shriver, grew the Special Olympics from a small event in her backyard to a worldwide presence with over 4 million athletes and 1 million volunteers in 170 countries.

Barbara and her inspirations - the children, families and her brother, Steve.

Joining us in this episode of the podcast is Barbara Warman, Director of the Family and Young Athletes Programs of the Special Olympics. Like her organization’s founder, Barbara is an exceptional sibling and was inspired to join the Special Olympics by her brother Steve.

Barbara gives us the rundown of all things Special Olympics – from how to volunteer and participate at the local level to the international spectacular of the World Games. We take an interest in two of the Special Olympics initiatives:

The Young Athletes Program, which provides activities and fun while developing key motor skills in kids less than 8 years old.
The Global Family Leaders Program is a group of select individuals chosen to promote and educate about the mission and philosophy of the organization.

Our friend Rick from Down Syndrome Daily joins us again with an amazing story about a Canadian play about Down syndrome, starring nine actors who all have Down syndrome.

Download Down Syndrome Radio, Episode #8.
Better yet…subscribe, rate us and leave a comment on iTunes!