Monthly Archives: March 2012

Light the Way 2012

First Spouses from U.S. states and territories observed for the second year the Light the Way event on World Down Syndrome Day March 21. The goal of the event is to enhance awareness of the rapidly advancing area of Down syndrome cognitive research, which holds great promise for improving memory, learning and communication for individuals of all ages with Down syndrome.

Participating First Spouses lit their respective governor residences in the color blue, or recognized the event in a variety of other ways in order to bring greater attention to Down syndrome cognitive research. Participation included: Alabama, Arkansas, Colorado, Delaware, Guam, Kansas, Maine, Maryland, New Hampshire, New Jersey, Nevada, Pennsylvania, South Carolina, Texas, Utah, Virginia, Virgin Islands, Washington, West Virginia and Wyoming.

Research Down Syndrome is grateful for the continued support of this program by the First Spouses. Many local Ds associations have joined the effort by making financial commitments to Down syndrome cognitive research. Progress is encouraging, including the initiation by Roche of a Phase 1 clinical trial to investigate a molecule designed to address the cognitive and behavioral deficits associated with Down syndrome. Multiple pathways for potential drug targets are being investigated. A national Down syndrome research consortium has been formed.

The Down syndrome community nationwide needs to sustain this momentum. Together we can continue this progress which holds such tremendous promise for people of all ages with Down syndrome.

 

First Spouse Light the Way Initiative Observed on World Down Syndrome Day

In an initiative led by New Jersey First Lady Mary Pat Christie, First Spouses from U.S. states and territories observed for the second year the Light the Way event on World Down Syndrome Day March 21. The goal of the event is to enhance awareness of the rapidly advancing area of Down syndrome cognitive research, which holds great promise for improving memory, learning and communication for individuals of all ages with Down syndrome.

Participating First Spouses lit their respective governor residences in the color blue, or recognized the event in a variety of other ways in order to bring greater attention to Down syndrome cognitive research. Participation included: Alabama, Arkansas, Colorado, Delaware, Guam, Kansas, Maine, Maryland, New Hampshire, New Jersey, Nevada, Pennsylvania, South Carolina, Texas, Utah, Virginia, Virgin Islands, Washington, West Virginia and Wyoming.

Research Down Syndrome is grateful for the continued support of this program by the First Spouses. Many local Ds associations have joined the effort by making financial commitments to Down syndrome cognitive research. Progress is encouraging, including the initiation by Roche of a Phase 1 clinical trial to investigate a molecule designed to address the cognitive and behavioral deficits associated with Down syndrome. Multiple pathways for potential drug targets are being investigated. A national Down syndrome research consortium has been formed.

The Down syndrome community nationwide needs to sustain this momentum. Together we can continue this progress which holds such tremendous promise for people of all ages with Down syndrome.

WDSD Wrapup

Over $425,000 — almost half a million dollars.

That’s how much you raised for Down syndrome cognition research last week.  On World Down Syndrome Day we asked for your support and you showed it, more readily than we ever imagined.

Researchers’ continuing efforts depend on your generosity in an obvious, concrete way.  We count on it, too, in a less direct sense: Knowing so many of you share our vision is inspiring and energizing.  You, your families, your loved ones with Down syndrome — well, you’re the reason we do what we do, and we appreciate your vote of confidence more than we can say.

As part of our plus15 Campaign, we ask our friends to “Do More for Down Syndrome Research” — and you did, beyond our wildest dreams.  We’re all so pleased and grateful.  Thank you so much for your support!

Aside from that rush of excitement, there was plenty to celebrate last week as the UN recognized World Down Syndrome Day for the first time.  DSRTF‘s Margie Doyle spoke at the UN’s “Building Our Future” conference — although naturally we’d love to say she was the highlight of the day, it’s impossible to deny the power and persuasion of the self-advocates who spoke, the educators who passionately promoted the worldwide imperative of getting kids with DS into the classroom, and the specialists whose compassion and humanity came through in even their short presentations.  You can watch the presenters here:

Vodpod videos no longer available.

(Margie appears at around the 3:20:00 mark — but don’t miss any of the others, either!)

We also presented a special webinar on 3/21, with Johns Hopkins University’s Dr. Roger Reeves.  For more than 25 years, Dr. Reeves has pursued research in a field where many once thought progress was impossible.  But with every new advance, Dr. Reeves and his colleagues are proving otherwise, and we were thrilled to have him share his perspective with our friends online.  If you missed the presentation, you can still catch it here — and watch this space for more information on Dr. Reeves’ work on the Down Syndrome Cognition Project.

Finally, we’d like to give a special mention to a handful of bloggers who helped spread the word about DSRTF for WDSD.  (TYVM!)    Michelle from Big Blueberry Eyes, Tracy from Ty’s Adventures, Rick from Down Syndrome Daily, and Chris from jchriscook.com were all instrumental in letting people know what we do at DSRTF and plus15, and we can’t thank you enough for sharing our message with your community.

And let’s not forget our Facebook friends, who helped our WDSD mission go viral.  We “Like” you and we thank you.  And countless others of you on Twitter passed along news of our 3:1 match — in the briefest tweetspeak, let us say Tx 4 the RTs!

All in all, World Down Syndrome Day was a fantastic moment for our whole community.  It was particularly meaningful for us because it showed us very clearly how dedicated you are to making sure people with DS have every opportunity to fulfill their potential.  Thank you so much for helping us in our drive to make that happen.

RDS Thanks Maggie O’Neill

Research Down Syndrome was privileged to be associated with the Salon Art Party held in Washington, DC on March 25 supporting RDS and Down syndrome cognitive research. Our deepest thanks go to Maggie O’Neill Fine Art and Maggie O’Neill, all the creative artists and volunteers.Your dedication and effort will help us Empower the Extraordinary! Thank you Lincoln, Irish Whiskey Public House, and especially Ross Group at RBC Wealth Management for sponsorship that helped make this event so successful. Lastly, the commitment of Erin and Brendan Fry to their young Flynn and hundreds of thousands of others with Down syndrome helped make all of this happen. RDS was honored to be associated with all of those involved in this remarkable event.

The event featured artists: Chris Cooley, Dominique Fierro, Brittany Sims, Karen Suderman, Tina Palmer Art and Rodger Schultz who kindly donated artwork for this auction and portions of proceeds of additional art that was purchased.

Pictures From the 6th Annual O’Neill Salon Art Party

Research Down Syndrome was privileged to be associated with the Salon Art Party held in Washington, DC on March 25 supporting RDS and Down syndrome cognitive research. Our deepest thanks go to Maggie O’Neill Fine Art and Maggie O’Neill and all the creative artists and volunteers.Your dedication and effort will help us Empower the Extraordinary! Thank you Lincoln, Irish Whiskey Public House, and especially Ross Group at RBC Wealth Management for sponsorship that assured success of this event. Lastly, the commitment of Erin and Brendan Fry to their young Flynn and hundreds of thousands of others with Down syndrome helped make this happen. RDS was honored to be associated with all involved in this remarkable event.

Maggie O'Neill

DC Art

A Night of Art and Blues

The inaugural Research Down Syndrome cocktail reception and silent auction, A Night of Art & Blues is being held on Friday, May 11, 2012 at O

6th Annual O’Neill Studios Salon Party

Research Down Syndrome is pleased to be the event beneficiary of the Salon Art Party that is being held on March 24 in Washington, DC. The fundraiser is being planned and hosted by Maggie O’Neill Fine Art.

Maggie O’Neill is a Washington, DC based fine artist and the Creative Director of O’Neill Studios, the decorative painting company she founded in 2001.

Tickets to the event may be purchased here. Read more about this event in this Washington Life article.

You can bid on 4 of the items in the auction right here.

RDS is grateful to Maggie O’Neill and all the event volunteers for planning and hosting this event. Their support of our mission is remarkable.

O'Neill Art Event