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.

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.

Celebrating WDSD with a 3:1 Match…and More

World Down Syndrome Day is almost here, and it’s hard to contain our excitement.  For the first time, March 21 — 3/21, for three copies of the 21st chromosome — is being officially observed by the United Nations.  Although we do this on a personal level daily, 3/21 represents our chance to speak in a single global voice to advocate for the inclusion and celebration of people with Down syndrome.

You’ve spoken up, too, adding your voice to the conversation through the plus15 campaign’s World Down Syndrome Day map.   We asked you to complete this sentence: “A 15% increase in learning, memory, and speech would mean that my loved one with Down syndrome could…”  Your answers show such hope for the future, such love for your children, and so much pride in their accomplishments so far.  We thank you for sharing — your words and your pictures inspire all of us to work toward a future of heightened possibility for all people with DS.

To further our WDSD celebration, we’re offering a webinar with Down syndrome researcher Dr. Roger Reeves of Johns Hopkins University.  Dr. Reeves has devoted more than 25 years to the field of DS cognition research, and we’re so pleased to help share his perspective with you through this special online presentation. We’ve reached our maximum number of signups, so registration for the webinar is now closed, but you’ll be able to view the presentation online shortly after the event — stay tuned for a link.

Finally, we’re thrilled to announce that on Wednesday, March 21, all donations to the DSRTF will be matched 3:1 by some of our generous donors.  Your $20 donation becomes $80, your $100 becomes $400, and so on — your gift will be quadrupled. This is an amazing opportunity to maximize your support of DS cognition research, so we urge you to take advantage of this one-day event.  And we thank you with all our hearts for sharing our commitment to increasing independence and learning for people with DS.

RDS Runners Season is Underway

RDS Runners is the national charity racing program supporting Down syndrome cognitive research. RDS Runners teams recently competed in half marathons in New Orleans, Washington, DC and New York City. The New York City RDS Runners team was the 4th highest fundraiser in this event. 

Thank you teams. Your miles of training, event miles and motivated fundraising are supporting research that holds the promise of the development of safe and effective therapies that will enhance life opportunities for persons with Down syndrome.

Follow our RDS Runners on our team blog, where we will be posting pictures, runners’ stories, training tips and much more.

“plus15 Said WHAT?” A Few Words About Words

Lately we’ve been sorry to see that the language in some of the media pieces we’ve featured on our Facebook page has made some of our friends uncomfortable and angry.  We want you to know that we share your chagrin when terms like “affliction” or “suffering” are used in these articles and headlines to describe people with Down syndrome — people we know to be living happy, fulfilling lives, in fact, and certainly not “suffering” from anything.

There’s also been concern about the use of “Down’s syndrome” instead of the U.S. standard, “Down syndrome,” a difference in usage that appears to be regional.  The articles we highlight that employ this term, which we understand to be unacceptable in American parlance, appear in publications originating from overseas, where “Down’s syndrome” is still the common term, and does not seem to carry any stigma — an interesting linguistic phenomenon.

Finally, there are instances in which words like “dysfunction” or “failure” or “abnormal” are used — words that may be acceptable in one context but would be frankly outrageous in another.  In the articles we feature, these terms are used in the clinical sense, as a dry descriptor of aspects of a neurodevelopmental condition: a cognitive dysfunction, a failure of certain neurons to behave as they might be expected to, an abnormal response to stimulus.  We do not and will never countenance the characterization of a person using such terms, but we understand that they have a legitimate application when talking strictly about research.

We want to stress that when terms like that appear in plus15’s Facebook feed or in articles we may highlight here, they are direct quotes from the material we’re featuring.  We feel strongly that using respectful person-first language is an imperative, and in the communications we create ourselves, we’re committed to using terminology that accurately and positively reflects the reality of people with Down syndrome and their families.  Like you, we’re frustrated when we see the perpetuation of outdated, hurtful stereotypes through careless use of language.

We are also, however, committed to providing a conduit to relevant news about Down syndrome and cognition research — sometimes, unfortunately, that valuable information comes couched in terms that might give us pause.  We try to weigh the discomfort such language might provoke against the value of the information we’re providing, and we always consider the overall intent behind the articles in question.  (Needless to say, you will never see an article here where pejorative terms are used with intention.)

We hope the research news we highlight is intriguing and inspiring enough to energize you even in the presence of awkward wording or tone-deaf headlines.  We encourage you to voice your opinion about language that devalues the positive aspects of living with Down syndrome — just as you do here and on our Facebook page, but also in letters to the writers and editors of the articles where such misuses occur.

Thanks as ever for being here to share the excitement and take part in the rewarding work of supporting Down syndrome cognition research.  We’re thrilled to have such a thoughtful, engaged group of friends here.  We count on you to keep the dialogue going, so we appreciate hearing your thoughts.