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.

UN WDSD Video

For today’s Throwback Thursday, we look back just a few months ago to World Down Syndrome Day at the United Nations on March 21, 2014.

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Enjoy all the talks or fast forward ahead to about 2:34.12 for the Down syndrome cognition research portion of the day’s talks moderated by LuMind Executive Director Carolyn Cronin with presentations from:

  • Dr Yvonne Maddox, NICHD – Down Syndrome Research and Advocacy: Improving Lives Together
  • Dr William Mobley, University of California San Diego – Enhancing cognition in people with Down Syndrome
  • Professor Antony John Holland,  University of Cambridge – Understanding the link between Down syndrome and Alzheimer’s disease: developing preventative treatments
  • Debora Seabra, Self-Advocate – Healthcare must be inclusive – Article 25 of UN Convention on the Rights of Persons with Disabilities

 

Dr. Harpold Announced as Chair, DS-Connect® Governance Board

A longtime participant in the DS Consortium and DS-Connect® Registry Governance Board, LuMind Foundation’s Dr. Harpold will lead the Board overseeing DS-Connect® as the registry moves into its second year.

Dr. Michael Harpold, chief scientific officer at LuMind Foundation, has accepted an invitation from the National Institutes of Health (NIH) to serve as Chair of the Registry Governance Board for DS-Connect®.

DS-Connect Homepage FullDr. Harpold has been serving as an active representative on the Down Syndrome Consortium, the private-public partnership that worked with the NIH to create DS-Connect®, the Down syndrome registry launched by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) last year. DS-Connect® is a health data registry for people living with a diagnosis of Down syndrome (DS). Dr. Harpold has also been serving as an inaugural member of the DS-Connect® Governance Board.

“Dr. Harpold’s commitment to research in Down syndrome and his contributions to the registry have had a major impact on its success. We are very pleased to have him serve as chair of the DS-Connect Governance Board,” said Dr. Melissa Parisi of NICHD, who serves as director of the registry and Chair of the Down Syndrome Consortium.

Dr. Harpold succeeds Dr. Yvonne Maddox, who served as Deputy Director of the NICHD until her recent appointment to serve as Acting Director of the National Institute on Minority Health and Health Disparities by the NIH Director.

“I am very honored to be asked to serve as the new chair of the DS-Connect® Governance Board and to continue working together with my distinguished fellow Governance Board colleagues, those on the DS-Connect® Operations Board and NICHD as DS-Connect® expands offerings, including launching a Professional Portal for approved researchers, clinicians and health practitioners to access aggregate de-identified data as well as design, develop and undertake important new research and clinical studies,” said Dr.Harpold. “I especially thank Dr. Yvonne Maddox for all of her tireless efforts in making DS-Connect® a reality, and her dedicated leadership as the inaugural chair of the DS-Connect® Governance Board. DS-Connect® represents a long-needed and incredibly important resource for researchers, clinicians and all of the Down syndrome community.”

“Dr. Harpold is a recognized leader in the Down syndrome research community,” said LuMind Foundation Executive Director Carolyn Cronin. “His experience, expertise and willingness to collaborate and connect with researchers, individuals with Down syndrome and families with a loved one with Down syndrome are all valuable assets to our organization and the greater Down syndrome community.”

DS-Connect® is designed to connect its registered participants with information about the larger Ds community, including providing people with Ds and their family members with important knowledge about medical and demographic information, new research findings and treatments and opportunities for participating in new research studies and clinical trials. All the data is kept secure and confidential and registrants have direct control over their information and if or how often they are notified of research opportunities. DS-Connect® currently has more than 2200 people registered.