1989

Alan Gard and his son Alijah look back to 1989 for Down syndrome research inspiration: Let’s tear down down these walls!

By Alan Gard

The year 1989 has gotten some attention of late. This is primarily due to it being the birth year of Taylor Swift, she of recent world domination.  She even paid homage to that year as the title to her most recent album, which also was the final step into her total transformation to pop stardom.

It got me to thinking about what I remember about 1989. Well, first it got me to thinking how many people alive now can’t remember 1989 because they weren’t even born yet then. I am old!  I had to confirm some of what I remembered, but 1989 had a lot of events that for better or worse even those not born yet then probably know about. There was the San Francisco earthquake that delayed the World Series. That was the year of the Exxon Valdez disaster.  It was the year of the Tiananmen Square protest. The Hillsborough disaster at a soccer stadium in England was a 1989 event.

Not everything that happened that year was a disaster though. The Berlin Wall came down. Dead Poets Society and Indiana Jones and the Last Crusade entertained us. San Francisco 49ers fans remember it fondly as they won one of the most exciting Super Bowls in January, 1989 and then had a dominant season in the fall that led to another Super Bowl title (won in January of 1990).  The first version of Microsoft Office was released. Well, I’ll let you all be the judge of whether that was a good or bad thing given how much of an influence that suite of programs has impacted many of our work lives (at least in my actuarial circle).

One may be reading this and thinking, “What does any of this have to do with Down syndrome or Down syndrome research?” Please indulge me a little longer.

1989 is also the title of an album Ryan Adams recently released. It is a track-by-track reimagining of Taylor Swift’s popular album and it is quite a different take. One has to work to not dance a little while listening to Taylor Swift’s “Shake It Off.”  When I hear Ryan Adams’ version, I think I’m listening to a sequel to Bruce Springsteen’s “I’m On Fire.”  Adams’ version of “Out of the Woods” is draped in a melancholy we haven’t heard from Taylor Swift since Drew was the reason for the teardrops on her guitar. Mr. Adams makes a couple lyrical changes to “Blank Space” to make it more gender appropriate (and as an aside he removes the most iconic lyric on Ms. Swift’s entire album: “Cause darling I’m a nightmare dressed like a daydream”), but you’d never notice because you’d never think they are even the same song.

Now, most people probably ask the question, “Who is Ryan Adams?”  And because of that, a project like this is subject to claims of being a novelty or a cry for attention…a way for him to capitalize on one of the most popular albums of recent memory.  I personally don’t hear that at all. I think his courage in following his artistic instincts creates something well worth the investment.  And it provides some lessons that have a lot to do with Down syndrome and Down syndrome research.

First it gets people talking. There is a tendency for Down syndrome and Down Syndrome causes to be left out of the broader conversation. There is nothing worse than silence, so it is beneficial to be provocateurs in bringing Ds into mainstream discussions.

Second, one of LuMind RDS’s Dr. Harpold’s sayings related to research is, “If we don’t try, we don’t know.” This saying applies to Mr. Adams’ project too. I’m sure he didn’t even know how this was going to turn out. Regardless of whether one likes the album or not, we’d never know how good these songs are at their core…without their pop “makeup” if you will. And we are better for knowing just how good they really are. The Down syndrome community will be better for all research projects, even the ones where there wasn’t an earth-shattering breakthrough. We still learned lessons and thus research endeavors need to be encouraged.

Finally, it makes us think a little more about 1989 and, hopefully, about one particular event I listed above: the Berlin Wall being torn down. Think about how symbolic that was for so many people who had lived under oppression for so long. The opportunities offered by Ds research can break down walls and release many from the oppression of the fear of cognitive decline and not having their full potential recognized. If the thought of tearing down big walls excites you, LuMind RDS has a blank space for you, please write your name.

Might Normalizing Brain Development Help in Down’s Syndrome?

LuMind Research Down Syndrome Foundation’s Chief Scientific Officer Dr. Michael Harpold was referenced in a discussion from the Society for Neuroscience Annual Meeting. The article discusses if the cognitive impairments associated with Down syndrome could be prevented.

Dr. Harpold was mentioned along with others from Tufts Medical in Boston, Univeristy of Bologna in Italy and Institute for Basic Research’s Genetics Laboratory.

Check out the full article.

 

 

 

LuMind RDS Welcomes Three New Board Members

At our October 28, 2015 Board meeting, the LuMind RDS Board voted in three new members. Please join us in welcoming Virginia Bennett Flynn, Patrick Kannon, and Christopher Lis.

Virginia Bennett Flynn joins us from Massachusetts, but brings an international perspective to her Board role thanks to her extensive resume of working abroad and with global firms. Virginia will be vital part of the team propelling LuMind RDS’s strategic plan to a successful reality. We are grateful to Virginia will be lending her expertise in many areas, including participating on our Audit Committee.

Patrick Kannon has been a longtime supporter and committee member with LuMind RDS. We are so pleased to have Patrick join the Board and help guide our financial management. For the past five years, Patrick and his family have also hosted the very successful Ashley Rose golf tournament outside DC to benefit LuMind RDS.

Christopher Lis brings a wealth of knowledge and expertise to the LuMind RDS Board. Christopher joins us from the Chicago area where he will combine his scientific education with his vast experience serving on Boards. He also enjoys the full support of his family, including son Hayden Lis who started a fundraising page in support of his brother Collin, who has Down syndrome.

We look forward to learning more about all of our Board members and seeing how their talents help propel LuMind RDS and cognition research to the next level of cognition therapy breakthroughs!

Danke Schon and Tschüss to Dr. Bob

Dr. Robert Schoen

Dr. Robert Schoen, former president of Research Down Syndrome and LuMind Research Down Syndrome director of event and donor engagement, has retired from the organization. We are so grateful for Bob’s help and advice during the merger transition and join the thousands of RDS supporters – especially the vibrant community of Runners – in thanking Bob for his devotion, inspiration, and dedication to families with a loved one with Down syndrome.

Bob is looking forward to more time with his wonderful family and relaxing in the fabulous bier garten he created in his backyard, inspired by his years living in Germany. But we are certain he won’t forget his friends and fans at LuMind RDS!

Bob and his family, especially wife Sue (on Bob’s left), fully supported the mission to improve cognition for people with Down syndrome. Thank you Schoen family!

“Bob is a very bright, thoughtful, caring and passionate advocate for cognitive research to benefit the Down syndrome community. He has been tireless in his work on their behalf and will be greatly missed,” said Dan Flately, Vice Chairman on LuMind Research Down Syndrome and co-founder of Research Down Syndrome.

In addition to developing and nurturing a dedicated community of Runners through initiating and growing the RDS Runners program, Bob tapped into his scientific background to explain and educate the importance of Down syndrome cognition research. As anyone who attended one of his Research presentations, “Dr. Bob” had a gift for making technical information accessible to our audiences.

“We are tremendously grateful to Bob for his many contributions to LuMind Research Down Syndrome and all members of the Down syndrome community,” said Dr. Patricia White, co-founder of Research Down Syndrome. “Over the past decade, Bob has tirelessly and generously applied his scientific expertise, leadership experience, and warm personality to the advancement of Down syndrome cognitive research, making significant contributions to this cause and positively impacting the lives of countless individuals and families. Thank you, Bob!”

The Board and staff of LuMind Research Down Syndrome Foundation are so grateful for Bob’s commitment and his guidance during the merge of the two organizations, especially helping Kate Dochelli take over the reins of the Runners program.

“Bob was the catalyst behind the launching of the Runners Program during his tenure with RDS,” acknowledged LuMind RDS President and CEO, Carolyn Cronin. “His leadership, passion and commitment to the success of the fundraising program has and continues to heighten awareness and need to fund Ds cognition research.”

Dr. Schoen speaking at the 2014 Tribute 21 event in Washington, DC.

Bob remains a part of the community he help to create and nurture, attending fundraising events as a “VIP-for-life,” regularly posting about his runs on Facebook, and continuing to inspire and motivate people to Race for the Extraordinary.

We send Bob, Sue and their family our very best wishes and gratitude for years of impassioned devotion.

Alles gute, Dr. Bob.

LuMind RDS Runners Leyda and Chad Simon Profiled

Chad (wearing 31442) and Leyda (40770) are front and center for this photo from the Chicago Marathon on October 11, 2016. They are posing with their fellow LuMind RDS Runners at the pasta dinner the night before the race.

Chad Simon is a student at Fort Hays State University – and a long-time runner for the LuMind RDS Runners program. Chad runs along along with his wife Leyda in support of their daughter Ashylnn who has Ds.

Chad and Leyda were profiled in an article in the Fort Hays State University news outlining their commitment to the Runners program.

We are so proud to have Chad and Leyda on our team! Enjoy the article. 

#Race4eXtraordinary

Cognition Goes Global – LuMind RDS Joins Down Syndrome International

LuMind Research Down Syndrome Foundation is proud to announce we’ve joined Down Syndrome International (DSi) as an affiliate member.

DSi is a global network of Down syndrome organizations representing 131 countries around the world. They’re aiming to channel the expertise and experience existing in many countries and use that knowledge to benefit other countries, especially those in the developing world, to better opportunities for people with Down syndrome.

LuMind RDS’s partnership with DSi took off with a burst of speed. In addition to being part of an international network of Down syndrome organizations, LuMind RDS is collaborating with DSi on events such as a meet and greet with Formula 1 legend and Down syndrome advocate Damon Hill in Austin, Texas and promotion of the LuMind RDS Runners program.

“LuMind RDS brings access to information on cognition research in Down syndrome, including breakthroughs related to aging and cognition, which is very important to the worldwide community,” said Andrew Boys, Director of DSi. “DSi was impressed with what LuMind RDS has accomplished and happy to support the research.”

LuMind RDS is proud of pushing the needle on Down syndrome cognition research and supporting the spread of best practices and awareness by joining DSi. Recently DSi has worked on projects providing information, expertise and training in Tajikistan and Oman and this year invited organizations from Albania, Nepal, Bangladesh, Botswana, Vietnam, Uganda, Nigeria, Bhutan and Mauritius to take part in a program at the World Down Syndrome Congress in Chennai, India. Boys said their efforts focus on producing new information resources on medical care, development and education and employment, independent living and participation in society. DSi then looks to build the capacity of national Down syndrome organizations and provide training so that they can successfully advocate for people with Down syndrome in their countries.

“The countries with established programs are critical to building international consensus on some of these issues,” said Boys. “Many other countries are in very desperate situations, with people with Down syndrome facing prejudice and neglect. It’s critical to share knowledge, education and best practices and give fledgling groups in these countries the tools and the confidence to improve the situation.”

Founded in 1993, DSi may have a global reach, but their current footprint echoes the beginnings of Down syndrome. DSi is based in Teddington, England at the former home of pioneering Victorian Physician Dr. John Langdon Down, after whom Down syndrome is named.

Learn more about the great work DSi is doing around the world and look for more events and opportunities for collaboration between DSi and LuMind RDS.

Celebrating 10 Years of ROMP

Thank you to everyone who played, smiled, laughed and donated in celebration of 10 years of the ROMP on October 11 in NYC. We’ll be adding more pictures as we receive them and can’t wait to see the video of the event! (It’s here! Thank you Keith Brady!)

Romp For Research 2015 from Keith Brady Media on Vimeo.

So far, more than $167,000 has been raised this year with donations rolling in daily! If we can reach $200,000, the ROMP will have contributed more than $2 million dollars to Down syndrome cognition research through its decade of celebration. Let’s reach that milestone!

If you couldn’t make it, but still want to show your appreciation of the great work of the ROMP organizers, consider making a donation to the event. We’ll be continuing to accept your support until the end of the year.

A big heartfelt THANK YOU to Anthony Providenti, Mary Costello-Lazare, and Steve Lazare, as well as to the entire ROMP committee.

Warmth and Enthusiasm at the Alexander’s Angels Buddy Walk

We were so happy to represent cognition research at the 9th Annual Alexander’s Angels Buddy Walk on October 10, 2015 on Long Island. The sun was shining, kids were laughing, and a good time was had by all in celebration of Down syndrome Awareness Month.

Our VP of Development, Anne Tippett, was on hand to meet people, take photos, and spread the word about Down syndrome cognition research. The warmth and enthusiasm of the crowd and from Esther Gómez-Nieto was contagious and so inspiring!

We have so appreciated the tremendous support from the wonderful families of Alexander’s Angels over the past several years. Please learn more about this amazing organization in this past post on the Plus15 Blog.

3rd Annual Tribute 21 – November 6th, 2015

Research Down Syndrome is now LuMind Research Down Syndrome Foundation! Please visit our new site, http://www.lumindfoundation.org/tribute-21, to learn more and to purchase tickets for the 2015 Tribute 21 event!

Kate Dochelli Runs to LuMind RDS

We are happy to announce that Kate Dochelli has joined LuMind RDS to lead and grow the vibrant Runners program as well as coordinate special events for the organization. Kate has been a member of the RDS Runners program for several years and is poised to engage with runners since she is marathoner herself.

“I joined RDS Runners, now LuMind RDS Runners, two years ago. As soon I signed up for my first event, the Marine Corps Marathon, I received a call from Bob Schoen welcoming me to the community,” explained Kate. “It’s been such a great experience, learning about the research LuMind RDS funds as well as engaging with other runners around the country through the program.”

Kate’s introduction to the Runners program wasn’t without some bumps – literally. While Kate was training for the Marine Corps Marathon she was hit by a truck and suffered significant injuries that prevented her from competing in the event.

“Bob was in constant communication with my mom while I was in the hospital. We hadn’t even met in person yet and he was so concerned,” she said. That experience helped to solidify Kate’s warm feelings for the RDS Runners community, which have grown as she made friends from Texas to Minnesota.

A few weeks after the event while she was still recovering, Kate received an unexpected surprise. One day a shirt and letter arrived from the Marine Corps Marathon event organizers acknowledging all her hard fundraising and training efforts despite not being able to participate in the race.

“I learned that one of the Runners community members, Chad Simon, had arranged for a letter to be sent from the Marine Corps Marathon,” she explained. “It was such a nice, thoughtful gesture. It meant a lot to me during my recovery.”

Kate’s goal is to introduce new runners to this community and inspire and motivate existing runners whether they run 100 miles at a time or struggle to compete a fun run. She’ll also be motivating them to reach fundraising goals as they open opportunities for their loved one with Down syndrome.

“This community is so inspiring and so motivating. It’s a pleasure to be part of welcoming new runners and continuing to work and train with these amazing people,” she said.

The LuMind RDS Runners program welcomes people of all abilities who want to help raise funds for cognition research by competing in fun runs, road races, marathons, triathlons and relay races. “We say any race, any place, any date,” added Kate. “Just let us know your ideas and we’ll set you up with everything you need to prepare and fundraise.”

To learn more visit the LuMind RDS Runners page and request to join the LuMind RDS Runners Facebook group to join in the fun and raise money for Down syndrome cognition research!

#Race4eXtraordinary #Run4Ds