Awaken A Force

By Alan Gard, Devoted Dad (and Jedi Knight Battling Darth Dementia)

Aspiring Jedi Alijah and others with Ds need your help to defeat Darth Dementia!

As December greets us this year, many are in a festive move as a special event approaches…namely the release of Star Wars: The Force Awakens. Over $50 million in presale tickets have already been sold. When was the last time you bought a ticket in advance to go see a movie? I didn’t think so. In other words, this movie is going to be HUGE. There is extreme interest in checking in on Han, Luke, and Leia as well as meeting new characters Rey, Finn, and Kylo Ren.

The Force Awakens will be the seventh entry in the Star Wars saga. In a broad sense, the saga is a simple story of Good vs. Evil, or maybe more accurately it is a story of our individual choices to be Good or Evil and how those choices can change over the course of time and circumstance.

If one concentrates on the original trilogy, Episodes IV – VI, the story is Luke Skywalker’s Hero Journey.  It starts with the Call to Adventure from humble beginnings. In Luke’s case, he is reticent at first. He is too busy with the harvest to get involved. That sounds familiar to most of us in the frenzy of our day-to-day lives! He eventually heeds the call and over the course of this story arc redeems his father and brings down the leadership of the Galactic Empire.

Of course, now the story won’t end there and much of the interest in The Force Awakens is in what becomes of Luke after the story left off 32 years ago. With one Hero’s Journey complete, we now will learn what happens when there is another chapter:

• Does Luke stay a hero?
• Does he turn to the Dark Side?
• Does he become a character more gray than at the black or white end of the Dark vs. Light spectrum?

As one who grew up with the original trilogy, Luke is the character in which I have the most interest as the new saga begins.

The story could also be an ongoing story of The Force, a metaphysical energy that binds everything in the universe together and gives those who are genetically and spiritually gifted to tap into it magical powers. It has its basis in the concept of Prana, meaning “life force” from Hindu culture. This view makes the story one about how we are collectively part of something bigger and all must play our role in that story.

If viewed over the entirety of the six episodes released to date, it is the Story of Anakin. He starts as a slave, learns he is strong with The Force, is trained, becomes a Jedi, turns to the Dark Side becoming a Sith Lord named Darth Vader, gets severely injured in a duel with his original mentor Obi-Wan, gets saved by the Emperor and technology, serves as the Emperor’s sergeant-at-arms in oppressing the galaxy, vanquishes Obi-Wan, fails to crush the Rebel Alliance, discovers he has a son, cuts son’s hand off in a duel, takes his son to the Emperor to be turned to the Dark Side, turns on the Emperor and kills him, and then dies having returned back to Good. And that’s the simple version!

In my view, Episodes I – VI are really a rise and fall story of the Sith, an order that derives power from the Dark Side of the Force. This order sought to elevate the strong and eliminate the weak. But throughout the Star Wars story, the Sith are foiled by those they might consider weak working together to overcome them.

Unfortunately, the Sith are not confined to a galaxy far, far away. We have a Sith Lord among us here, and his name is Darth Dementia. He is a particularly ruthless enemy. He steals the souls of his victims and inflicts pain on suffering on all those around them.

I have witnessed Darth Dementia firsthand. Growing up, visits with my Great Aunt Catherine showed me what Alzheimer’s related dementia could do to one’s ability to know their family. Imagine how sad an existence it would be to not be able to connect with your loved ones from both sides of that diagnosis. As a young adult, I saw two of my uncles suffer from Parkinson’s disease and the dementia that can eventually accompany that disease.

Now I am a parent to a child with Down syndrome. While my wife and my current energies are spent trying to help Alijah develop and reach his potential, Darth Dementia is an ever-present, dark-cloaked figure in the corners of our minds. As one who works with numbers, I know just how stacked the odds are against Alijah in his fight to hold off Darth Dementia. To think that all the gains Alijah is making could be taken away so early in his life is a heartbreaking concept. But, as of today, that is a very likely scenario.

Luckily, there are already a few Jedi taking on this powerful Sith Lord. But as the movies have shown, the only real victory comes when the multitude work together. So if you are an aspiring Jedi, you have an opportunity to be a hero in this story. Or if you see yourself as more of a Wookie or an Ewok, you can be a hero in this story too. Imagine if everyone who has already pre-ordered their The Force Awakens ticket got so inspired by the movie and the fight against Darth Dementia that they came home and made a donation in the amount of their movie ticket. $50 million would serve notice to Darth Dementia that that his power was at risk.

If all those that see the movie would do the same thing, it would change the conversation from IF we can do it to WHEN. And asking when is a MUCH better question than asking if – not just for those with Down syndrome, but for each and every one of us that want to keep ourselves and our families safe from Darth Dementia’s soul-stealing clutches. While Darth Dementia may play favorites toward victims with an extra chromosome, they are not his only prey.

Think back to where the Star Wars phenomenon began. It began with A New Hope. Any donation now—big or small, the price of a movie ticket, whatever—will in fact make A New Hope come true in the lives of those most at risk and their loved ones. Don’t let the supposed constraints of the “harvest” in your life deny you your own Hero’s Journey. And while we—at least us non-insiders—don’t know where the story goes after The Force Awakens, I am positive there is a place in this story for us all to help Awaken A Force to defeat Darth Dementia once and for all. I definitely want that to be a part of my story. I hope you do too.

Thank you for your consideration. And may The Force be with you!

Never Underestimate Your Influence

by Anne Tippett, LuMind RDS Vice President of Development

Do you have plans for December 1, Giving Tuesday? Giving Tuesday is a national day of giving that follows Black Friday and Cyber Monday. You may already have a charity in mind to support, hopefully you’ll consider LuMind RDS.

Did you know your friends and family might want to participate in Giving Tuesday, but are uncertain about which organization to support? They may be interested in supporting Down syndrome research because they care about you, they just need to know about us.

While you may take for granted how you live your life and support your loved one with Down syndrome, you may not realize the positive impact you have on others. Teachers, relatives, friends, healthcare providers, all types of people have supported us because of your influence.

Giving Tuesday is rooted in social media and fueled by online sharing. Please watch our website, open our emails, and share our posts with your network to encourage people to donate to LuMind RDS.

Or tell your story and invite people to participate in Giving Tuesday by supporting you and your loved one with Down syndrome. Use #GivingTuesday #GTLuMindRDS and we will share (and thank you!).

But it’s not all about money – Giving Tuesday is about finding ways to give back. So, all day on Tuesday, we’ll be posting ways people can share talent, time, and ideas. Give them a look and consider asking your network to lend some talent to our cause. If you want a preview, check out our list of volunteer opportunities.

And we’d love to help you help us! Tell us why you are inspired by the promise of Down syndrome cognition research and we’ll feature you on our social sites. Make sure to tag us on Facebook, Twitter and Instagram @LuMindRDS or send an email to our marketing director, Ellen Oliver at EOliver@LuMindRDS.org, and we’ll gladly celebrate your support!

Down syndrome cognition research is a promising investment, not only for our loved ones with DS, but also for the Alzheimer’s community. We thank you for supporting LuMind RDS and giving with your head as well as your heart.

NIH supports new studies to find Alzheimer’s biomarkers in Down syndrome

The National Institutes of Health announced a groundbreaking initiative to track dementia onset and the progress of Alzheimer’s disease in people with Down syndrome.

The studies will be funded by the National Institute on Aging (NIA) and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), both part of NIH.

“We are very excited and grateful that the NIH Biomarkers of Alzheimer’s Disease in Adults with Down Syndrome Initiative has now been established with funding by the National Institute on Aging and the Eunice Kennedy Shriver National Institute of Child Health and Human Development,” said Dr. Michael Harpold LuMind RDS Chief Scientific Officer.

This initiative represents one of the major recommendations deriving from the 2013 NIH Workshop “Advancing Treatments for Alzheimer’s Disease in Individuals with Down Syndrome” with the participation, co-sponsorship and co-support by the LuMind RDS Foundation. This recommendation was also subsequently incorporated into the Federal National Plan to Address Alzheimer’s Disease.

“This is an extremely important and much needed research initiative to more deeply understand the earlier onset and course of Alzheimer’s disease in individuals with Down syndrome, and the results from this new five year research initiative will also be important in further accelerating clinical trials to develop effective new therapies,” said Dr. Harpold.

View the full press release from NIH here.

LuMind Research Down Syndrome Named an Official Charity Partner of the 2016 United Airlines NYC Half Set for Sunday, March 20, 2016

New York, November 17, 2015 — LuMind Research Down Syndrome Foundation was named an Official Charity Partner of the 2016 United Airlines NYC Half, it was announced today by Carolyn Cronin president and CEO of LuMind RDS. The race will take place on Sunday, March 20, 2016.

“The opportunity to partner with the United Airlines NYC Half gives LuMind Research Down Syndrome Foundation the ability to raise funds and awareness for valuable Down syndrome cognition research, including unraveling the connections between Down syndrome and Alzheimer’s disease,” said Cronin. “We look forward to having a dedicated team of runners take on the United Airlines NYC Half on behalf of our organization—training, preparing, and ultimately completing the 13.1-mile race for a cause that is both meaningful and close to each and every one of them.”

Over five million dollars was raised by more than 2,800 charity runners during the 2015 United Airlines NYC Half to help more than 100 nonprofit organizations support their missions and services. Approximately 120 official charity partners will be part of the 2016 United Airlines NYC Half.

LuMind RDS Runners will be running in the United Airlines NYC Half Marathon on 3/20/16.

LuMind RDS Runners is a vibrant community of dedicated parents, siblings, family members, and friends devoted to pushing physical limits in racing challenges to fund research on improving cognition in people with Down syndrome. The research they help to fund focuses on improving learning, memory, and sleep for people of all ages with Down syndrome enabling increased opportunities for independence at school and work. People with Down syndrome have an extra copy of the 21st chromosome, so LuMind RDS Runners “race for eXtraordinary,” especially during the month of March in honor of World Down Syndrome Day on March 21. LuMind RDS runners – and walkers will be participating in events all month with the United Airlines NYC Half Marathon as a capstone event.

“We welcome LuMind Research Down Syndrome Foundation as an official charity partner of the 2016 United Airlines NYC Half,” said Michael Capiraso, president and CEO of New York Road Runners. “We are privileged to partner with approximately 120 official charity partners for this event, impacting thousands in need of support for so many significant causes. Our charity runners are an inspirational and integral part of this race and we applaud their efforts and the positive impact they each make.”

The United Airlines NYC Half features some of the most talented American and international professional athlete fields and a vast range of competitive, recreational, and charity runners.  Some 1,500 volunteers and thousands of spectators line the course in support of all participants. 19,454 finishers completed the 2015 United Airlines NYC Half from nearly all of the 50 states and more than 67 countries. For the first time ever, the NYRR Times Square Kids’ Run at the United Airlines NYC Half gave hundreds of kids the opportunity to participate in a race of their own as they completed a 1500-meter out-and-back course through the heart of New York City.

The 2016 United Airlines NYC Half will be broadcast live locally on WABC-TV, Channel 7 for the fifth consecutive year. 

About New York Road Runners

Founded in 1958, New York Road Runners has grown from a local running club to the world’s premier community running organization, whose mission is to help and inspire people through running. NYRR’s commitment to New York City’s five boroughs features races, community events, youth running initiatives, school programs, and training resources that provide hundreds of thousands of people each year, from children to seniors, with the motivation, know-how, and opportunity to Run for Life. NYRR’s premier event, and the largest marathon in the world, is the TCS New York City Marathon. Held annually on the first Sunday in November, the race features 50,000 runners, from the world’s top professional athletes to a vast range of competitive, recreational, and charity runners. To learn more, visit www.nyrr.org.

About LuMind Research Down Syndrome Foundation

LuMind Research Down Syndrome Foundation, formerly the Down Syndrome Research and Treatment Foundation (DSRTF) and Research Down Syndrome, is a national non-profit organization headquartered in Marlborough, Massachusetts, aimed at accelerating the development of treatments to significantly improve cognition, including memory, learning and speech, for individuals with Down syndrome. LuMind RDS Foundation is the leading source of private funding supporting research at major research centers, including Johns Hopkins Medicine, Stanford University, University of California, San Diego, and University of Arizona. Since its founding in 2004, LuMind RDS Foundation has committed more than $13 million to fund results-driven research programs that will benefit children and adults with Down syndrome, and has been instrumental in the initiation of clinical trials now under way. To learn more: www.LuMindRDS.org.

DS-Connect®: Step-By-Step

By Veronica Fratta

Launched in 2013, DS-Connect^® is an online health registry for individuals with Down syndrome. The registry supports Down syndrome research by collecting data on medical conditions affecting people with Down syndrome and making that de-identified information available to scientists and the medical community. The registry also connects people with Down syndrome with scientists running clinical trials.  It’s a great way to collect personal health data in one place and find referrals to medical professionals in your area.

DS-Connect^® is run by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). Along with the NIH, organizations like the LuMind Research Down Syndrome Foundation, the National Down Syndrome Society, and the National Down Syndrome Congress make up the DS Consortium, which supports and disseminates information about DS-Connect^®. The current chair of the DS Consortium is LuMind RDS’s Chief Scientific Officer, Dr. Michael Harpold.

Currently, more than 3,220 people from all over the world are registered.  Yes, the registry was formed and is managed in the United States, but anyone from around the world is encouraged to participate. The more people register, the more useful information is available to the medical community and the more likely it is for treatments for medical conditions affecting individuals with Down syndrome are to be discovered.

How Does Registering Work?

Registering for DS-Connect^® is very easy and only takes about ten minutes of your time to set up an account. Just go to dsconnect.nih.gov and start filling in the required fields. You will first be asked for your name and email address and your relationship to the person with Down syndrome. You will also be asked to pick a username and password.  After signing a consent form that explains how the data will be used, you move to the second page.

Next you will be asked for information on the participant: Name, age, gender, city of birth, etc.  You can customize your profile to choose who may view your de-identified data (data stripped of all personal information like your name or address) and how you would like to be contacted, if you are open to being contacted. You may elect to share your de-identified data with researchers. You have the option of being alerted of research trials. You can also choose whether to be contacted by the registry coordinator if scientists make useful discoveries for a condition that affects you.

At all stages, your privacy is guarded and your information secure at DS-Connect^®.  DS-Connect^® does not collect your social security number or your address – just your zip code. And by de-identifying data, your personal information is kept confidential, while still allowing researchers to use the important medical data they need to better understand Down syndrome and how to treat it.

If you are still concerned about privacy issues, you can leave many sections blank— DS-Connect^® just needs a valid email address and a name (you can even put in an alias!). what is most important is the health information you enter into the registry.

After clicking on the Update button, you can either come back another day to complete the questionnaire or continue on. The initial medical questionnaire at DS-Connect^® collects information about the child’s diagnosis, other family members with Down syndrome, congenital heart defects, gastrointestinal conditions, skin and dental issues, skeletal problems, cancer, and many other medical conditions that are common in people with Down syndrome. A green bar at the top of the questionnaire helpfully logs your progress and every time you press the Next button, your data is saved so you can come back to it at a later time if necessary.

There are also questions on the education, reading, and math levels of the person with Down syndrome, as well as some information on the family and then – you’re done!

There are other questionnaires on development, prenatal and birth history, sleep, and the heart that can be filled at any time.

You can also input height and weight measurements and attach reports like echocardiograms or skin biopsies. It’s a great way to keep all your medical information organized and in the same place!

Exploring the Information

By clicking on the tab, “Explore the Data,” you can see the aggregate data of all participants. For example, you can see how prevalent sleep apnea is in people with Down syndrome, and at what age they are most likely to be diagnosed.  You might be curious to know what percentage of people with Down syndrome have atlanto-axial instability or you might wonder how many adults with Down syndrome work.  All this information and more is available on DS-Connect^®.

Knowledge is Power

Without good data, it’s hard for doctors and scientists to help people with Down syndrome obtain the best possible care. That’s why DS-Connect^® is such an important tool for the medical community and for all individuals with Down syndrome. Armed with data and facts, parents can make informed decisions about their child’s medical care and help them to thrive and succeed. Also, demonstrating an engaged community interested in research, biopharma companies are more likely to feel inspired to invest in drug therapies and treatments for people with Down syndrome.

DS-Connect^® set a very ambitious goal of enrolling 10,000 people in DS-Connect^® by 2016.  Will you help them reach their goal?  Go to dsconnect.nih.gov now to sign up.

Many thanks to Dr. Sujata Bardhan, the scientific program manager and coordinator of DS Connect, who very generously took the time to speak with us about the registry.

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.