Affiliate Profile: The DS Association of Central Texas—Something for Everyone

Suzanne Shepherd and Jack

Jack and Suzanne Shepherd

The Down syndrome community of central Texas is blessed with a great support organization. Founded in 1991, the Down Syndrome Association of Central Texas (DSACT) offers a wealth of programs for every stage of life.  We want to recognize DSACT for its generous support of the LuMind Foundation and share what makes them such a special group.

To learn more about DSACT, we spoke to Suzanne Shepherd, the Co-President of the Board of Directors and Healthcare Chair, as well as a busy mom to Jack, who is 17 and happens to have Down syndrome.

Suzanne first became involved with DSACT as a parent after Jake’s birth in 1997. In 2007, she joined the board of DSACT and she has been active in the organization ever since. Suzanne has been instrumental in developing many of DSACT’s programs, from outreach efforts to healthcare professionals to social groups for kids of all ages along with a wide variety of activities and classes. DSACT offers a truly amazing number of programs: book clubs; swimming, dance, and cooking classes; visual and martial arts; etc.

But what we at the LuMind Foundation appreciate beyond anything else is DSACT’s strong commitment to our joint mission of funding Down syndrome cognition research. DSACT has donated very generously to LuMind over the past several years. They have also organized a Research 101 seminar with LuMind’s Dr. Michael Harpold and Carolyn Cronin to educate and inform their members of the progress that has been made in the past decade.

“The research that wasn’t there when my son was born is now there,” says Suzanne, “and that gives me hope!” Hope because, Suzanne points out, “These cognitive treatments will allow people with Down syndrome to make greater strides toward living independent lives.”

Today, we can point to very important discoveries in the area of cognition at well-recognized and prestigious institutions. And, as Suzanne says, it’s more efficient for local organizations to pool their money together to fund research at the national level. In an ideal world, Suzanne would like every affiliate to follow DSACT’s example by contributing 5% of their budget to benefit LuMind and the important cognitive research we fund. We would love that too, Suzanne!

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LuMind Foundation Receives Founder’s Gift

thank you groupWe are so fortunate! Our founders had a vision ten years ago when they started LuMind Foundation. They saw the possibilities that would be created if cognition was increased by 15% in people with Down syndrome.

Since public funding for Down syndrome research was very limited (and still is), they made the decision to create a pipeline of private funding to engage researchers. Nine drug targets and four clinical trials later, their vision – more independence – is closer to becoming a reality.

Thank you, Jim and Patty White, for your gift. You have inspired so many people with your vision!

Making Connections: Cure Alzheimer’s Fund and LuMind Foundation

GatheringOn October 15, LuMind Foundation Executive Director Carolyn Cronin attended a research presentation by the Cure Alzheimer’s Fund at the Harvard Club in Boston.

The presentation featured Rudy Tanzi, Ph.D., of Harvard Medical School/Massachusetts General Hospital and chairman of Cure Alzheimer’s Fund Research Consortium, talking about the state of Alzheimer’s research today.  For Carolyn, a lot of the discussion was about familiar territory.

“Dr. Tanzi’s presentation focused on the same parts of the brain – the hippocampus, frontal cortex, cerebellum – that we do in our Down syndrome research updates,” said Carolyn. “This meeting reinforced the reasons why we work in collaboration with those in the Alzheimer’s field. It’s exciting to think how those individuals in the Down syndrome community who are participating in clinical trials could benefit the Alzheimer’s community, too.”

To hear the presentation, there’s a video to watch. To learn more about Dr. Tanzi’s research, here’s an article with more information.

“It was so interesting to see the correlation between the research LuMind Foundation is funding on Down syndrome cognition and the Alzheimer’s research,” said Carolyn. “It just proves you never know where the next research breakthrough will come or the impact it could have.”

Science Brings Hope for Down Syndrome – A Call to Action

In honor of Down syndrome Awareness Month, we wanted to revisit this article by LuMind Board Member Margie Doyle that Maria Shriver featured on her website promoting inspiration stories for architects of change.

Margie and her family inspire us and we hope they will move you, too! Thanks so much for all you do, Doyle family!

Read Margie’s words of hope as she relates the importance of Down syndrome research. Read the full piece on Maria Shriver’s website here.

 

 

 

A Down Pour for Downs

20141011_111014 20141011_113349 20141011_121449 20141011_121819 20141011_121858Probably everyone would have preferred sunny warm weather, but spirits were the only thing not dampened at the Alexander’s Angels Buddy Walk October 11 on Long Island.

Esther Gomez-Nieto, president of Alexander’s Angels and her board members put together a great day with music, food, and fun. A bit of humor was provided by Kyle (pictured to right with Esther) who quipped it was a “Down pour for Downs!”

The Buddy Walk went on and the rain finally cooperated to leave only cloudy skies as the teams gathered in celebration. With so much fun – the event even made the local news!

Thank you Alexander’s Angels for inviting us to be part of your day and for being long-time committed supporters of cognition research.

 

 

 

Thank you ROMPERS!

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Dad Anthony and friends watch as Troy gives an interview about the ROMP.

NYC had a beautiful day for the ROMP FOR RESEARCH on October 12, 2014, attracting more than 1000 people. Enjoy some photos from the day of fun in the sun to raise funds for cognition development research for people with Down syndrome.

We sincerely thank event founders Mary Costello, Steve Lazare and Anthony Providenti for their continued support by organizing and running the 9th annual ROMP. All the details are still being tallied, but the event easily (and colorfully) raised more than $150,000 for Down syndrome cognition research.

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ROMP fun means a lot of sliding, climbing and bouncing!

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Who needs more proof of a good time than Louies chocolate smile?

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LuMind Foundation brings light to the science of cognition research. The ROMP adds color, fun and so much support.

Steve Lazare checks in with Dom and Jackie who welcomed everyone to the ROMP.

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All the ROMPERS left with smiling faces.

Buddy Walk Support

Thank you Beckett's Buddies!

Thank you Beckett’s Buddies!

It’s Buddy Walk season and while the LuMind Foundation can’t ease your tired feet or promise sunny weather, we can help communicate the importance of cognition research to your community.

If your organization supports research, we thank you and have gathered some materials for you to download and use at your Walks. Visit our events page and download the materials from our left menu sidebar:

  • About LuMind Foundation – the story of our founders and all we’ve accomplished in the last 10 years
  • Who We Fund: 2014-2015 – with our latest research grants
  • Take the LuMind DS-Connect challenge – outlining the donation we will receive when 125 people sign up for the DS registry during the month of October

Thank you for communicating the importance of Ds cognition research. We appreciate the help of our friends!

And thank you to the affiliate Down syndrome organizations who have invited us to speak at their Buddy Walks. We’ll be represented at walks in New York, Washington, South Carolina and California.