Sky’s the Limit Honorees Announced

LuMind Research Down Syndrome Foundation is happy to announce the honorees for the Second Annual Sky’s the Limit Awards Gala. Sky’s the Limit recognizes the best and brightest who have helped propel Down syndrome cognition research, celebrating their successes at a Gala on May 21, 2016 in Seattle, Washington.

Founders’ Award: Awarded to an individual or organization whose work has left a legacy in the advancement of Ds cognition research.

Honoree: Hayes Mechanical for their continued and growing golf events in support of Down syndrome cognition research. Terry Ancel, president of Hayes Mechanical will be accepting the award on behalf of the firm.

Dr. David Cox Rising Star Award: In recognition of an up and coming researcher.

Honoree: Dr. Michael Rafii, University of California, San Diego, for his work on the first clinical trial just started to study Alzheimer’s in adults with Ds.

Dr. William Cohen Researcher of Distinction Award: Awarded to an established researcher who has made a significant contribution to Ds research, produces research that is innovative, relevant and timely and collaborates with others both as researcher and mentor to advance research.

Honoree: Dr. Roger Reeves, Johns Hopkins University, for his strong research work, representing the discipline, and bringing several new researchers in the field through his consortium project.

Luminary Award: Presented to an outstanding volunteer(s) who consistently excels in their efforts with proven results.

Honorees: Steve Lazare,  Mary Costello Lazare, and Anthony Providenti for a decade of work on the ROMP for Research in New York, raising almost $2 million for cognition research.

Please join us in congratulating the honorees and plan to join us to celebrate their wonderful achievements on May 21.

World’s First Clinical Trial for anti-Abeta Vaccine Targeting Alzheimer’s Disease-like Characteristics in People with Down Syndrome

PRESS RELEASE – Issued by AC Immune

• Studies AC Immune’s ACI-24, the first anti-amyloid vaccine for treatment of Alzheimer’s disease-like characteristics in people with Down syndrome
• Clinical Study is done in collaboration with University of California San Diego
• US NIH provides significant funding with an additional grant from the LuMind Research Down Syndrome Foundation
• Alzheimer’s disease-like characteristics develop in virtually all people with Down syndrome over age 40; majority develops associated dementia over
  age 60

Lausanne, Switzerland, San Diego, CA and Marlborough, MA USA – January 7, 2016 – Today plans were announced to conduct the world’s first clinical trial for a vaccine targeting Alzheimer’s disease-like characteristics in those with Down syndrome. The study will test AC Immune’s vaccine ACI-24 and is being conducted in collaboration with the University of California, San Diego (UC San Diego) Down Syndrome Research and Treatment Center. Funding is provided by a significant grant from the US National Institutes of Health (NIH) and an additional grant from the LuMind Research Down Syndrome Foundation. This is the first public/private collaboration for a clinical trial in the field of Down syndrome.

Individuals with Down syndrome (DS) have an extra copy of chromosome 21 which carries the gene for APP encoding the precursor protein of Abeta, one of the hallmarks of Alzheimer’s disease (AD). An important consequence is that individuals with DS develop AD-like characteristics at a rate three to five times greater than that of the general population and at a much younger age. Further, AD-like characteristics develop in more than 98% of people with DS over age 40 with up to 80% developing associated dementia over the age of 60. It is estimated that there are 6 million people with DS worldwide, with 400,000 in the United States.

Trial participants will be adults with DS. The objectives of the trial include studying safety and tolerability of ACI-24, its effect on induction of antibodies against Abeta, clinical and cognitive measures in adults with DS and its effect on biomarkers of AD-like pathology in DS. Participants in the study will be treated for 12 months, with 12 months follow up.

Prof. Andrea Pfeifer, CEO of AC Immune said: “We are very pleased to bring this potentially disease modifying treatment for Alzheimer’s disease into the vulnerable, genetically predisposed Down syndrome population. The combined knowledge and resources of AC Immune, UC San Diego, NIH and the LuMind Research Down Syndrome Foundation should generate much needed insight for treating the Alzheimer’s-like characteristics of those with Down syndrome. Additionally, this ground-breaking clinical trial could enhance our understanding of early intervention and prevention of Alzheimer’s in general.”

Dr. William Mobley, Executive Director of the UC San Diego Down Syndrome Research and Treatment Center, commented: “We are delighted to join our colleagues at AC Immune and the LuMind Research Down Syndrome Foundation in this exciting study, the first step in a process whose ultimate goal is preventing Alzheimer’s disease in people with Down syndrome.  That both public and private funding sources support the study signifies the importance attached to Alzheimer’s disease and the valuable insights that will come from studies of this disorder in Down syndrome.  We wish to thank our colleagues as we eagerly look forward to helping people with Down syndrome and their families and loved-ones.”

Dr. Michael Harpold,  LuMind Research Down Syndrome Foundation’s Chief Scientific Officer, stated: “We are very excited the LuMind Research Down Syndrome Foundation has been able to work and join together with AC Immune, UC San Diego and NIH in establishing the first ever private-public partnership for a clinical trial in the field of Down syndrome. Accelerating research and the development of new potential therapies to address the developmental intellectual disabilities and earlier onset of Alzheimer’s disease in people with Down syndrome represents a major part of our foundation’s mission and commitment to prevent the earlier decline and loss of important gains they have attained throughout their lives.”

About ACI-24

ACI-24 is a liposomal therapeutic anti-Abeta vaccine candidate, which is owned by AC Immune and was discovered utilizing the Company’s proprietary SupraAntigen^TM technology platform. The vaccine is designed to stimulate a patient’s immune system to produce antibodies that specifically target the oligomeric and fibrillary Abeta proteins to prevent beta amyloid plaque accumulation and to enhance plaque clearance. Preclinical data demonstrated a significant activity in plaque reduction and memory restoration as well as a favorable safety profile characterized by a lack of local inflammation and a mode of action independent of inflammatory T-cells. The vaccine is currently also being studied in a phase 1/2a clinical trial in patients with mild to moderate AD, in which no significant safety issues have been detected to date.

About Down syndrome

Down syndrome, or trisomy 21, is the most common genetic cause of intellectual disability and developmental delay, and affects one in 700 newborns. This condition results when an individual has three, rather than two, copies of the 21st chromosome. This additional genetic material causes impairment of cognitive ability and physical growth, and is associated with other medical issues ranging from neurological and cardiac defects to hearing and vision problems as well as earlier development of Alzheimer’s disease. The average life expectancy for people with DS has increased from 25 years in the 1980’s to approximately 60 years today.

About Alzheimer’s disease

It is becoming increasingly clear that Alzheimer’s disease develops because of a complex series of events that take place in the brain over a long period of time. Two proteins – Tau and beta-amyloid (Abeta) – are recognized as major hallmarks of neurodegeneration: tangles and other abnormal forms of Tau protein accumulate inside the brain cells and spread between cells, while plaques and oligomers formed by beta-amyloid occur outside the brain cells of people with AD.

AD is one of the biggest burdens of society with a dramatic and growing worldwide incidence rate of one new case every three seconds, or 9.9 million new cases of dementia each year. Since the incidence and prevalence of AD increase with age, the number of patients will grow significantly as society ages. Worldwide in 2015 there are 46.8 million people living with dementia and by 2050 it is expected that global patient numbers will triple to 131.5 million. It is estimated that the annual societal and economic cost of dementia has risen from US$ 604 billion in 2010 to US$ 818 billion in 2015.  In the US, AD is now the 6th leading cause of death across all ages and is the fifth leading cause of death for those aged 65 and older.

About AC Immune

AC Immune is a leading Swiss-based biopharmaceutical company focused on neurodegenerative diseases with three product candidates in clinical trials.  The Company designs, discovers and develops therapeutic and diagnostic products to prevent and modify diseases caused by misfolding proteins. AC Immune’s two proprietary technology platforms create antibodies, small molecules and vaccines to address large markets across a broad spectrum of neurodegenerative indications. Alzheimer’s disease (AD) is the largest indication addressed by its products but the company’s innovative, differentiated and disease-modifying therapies are designed to shift the paradigm in the treatment of other neurodegenerative diseases such as Parkinson’s, Down syndrome, and Glaucoma. The Company has a large, diversified and promising pipeline featuring seven therapeutic and three diagnostic product candidates. The most advanced of these is crenezumab, an anti-Abeta antibody that is licensed to Genentech entering phase 3 clinical trials. Crenezumab was chosen by the US National Institute of Health for use in the first-ever AD prevention trial. The company has partnered three programs targeting Tau: ACI-35 with Janssen (therapeutic vaccine, phase 1b), Tau-PET imaging agent with Piramal (Alzheimer’s diagnostic agent) and anti-Tau-antibodies with Genentech (preclinical). The anti-Abeta vaccine ACI-24 phase 1/2a trial is run in house.

About UC San Diego Down Syndrome Research and Treatment Center

Established in 2009, the Center’s efforts focus on defining the genes and mechanisms responsible for the cognitive challenges faced by people with Down syndrome. Studies are carried out in both mouse models and in mouse and human cellular models.  The insights derived support translation of basic science findings into new treatments, using either existing drugs or through drug discovery. The Center’s work has resulted in conceptual innovations and several novel treatment targets and has inspired existing trials as well as the clinical study announced in this press release (supported by an NIH grant under award number R01AG047922). The Center is supported by the NIH and private foundations, including the LuMind Research Down Syndrome Foundation, the Alzheimer’s Association, the Tau Consortium and the Cure Alzheimer Fund.

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 an international non-profit organization with headquarters 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 Down syndrome cognition 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.

For further information please contact:

AC Immune

Prof. Andrea Pfeifer Chief Executive Officer Phone: +41-21-693 91 21 E-mail:andrea.pfeifer@acimmune.com	Eva Schier Corporate Communications Manager Phone: +41-21-693 91 34 E-mail: eva.schier@acimmune.com
Nick Miles Senior Consultant Cabinet Privé de Conseils s.a. Mobile : +41 79 678 76 26 E-mail : miles@cpc-pr.com	In the US Ted Agne The Communications Strategy Group Inc. Phone: +1 781 631 3117 E-mail: edagne@comstratgroup.comed

 

UC San Diego

William C Mobley, M.D., Ph.D. Professor of Neurosciences, and Executive Director, Down Syndrome Research and Treatment Center Phone: +1 858-534-9434 Email: wmobley@ucsd.edu

Scott LaFee Director, Media Relations Marketing and Communications UC San Diego Health Sciences Phone : +1 619-543-6163 Email : mailto:slafee@ucsd.edu

 

LuMind Research Down Syndrome Foundation

Carolyn Cronin President/Chief Executive Officer Phone: (508) 630-2178 Email: ccronin@lumindrds.org	Ellen Oliver Marketing Director Phone: (508) 630-2179 Email: eoliver@lumindrds.org
Michael M. Harpold, PhD Chief Scientific Officer Phone: (520) 297-3105 Email: mharpold@lumindrds.org

 

Federal Budget Updates Related to Down Syndrome Research

Our Dr. Harpold stays closely connected to and works in the world of research, not only Down syndrome and Alzheimer’s disease, but also relevant research endeavors at a broad scale. Here’s his take on the Federal 2016 Omnibus Budget Bill.

By Dr. Michael Harpold, LuMind RDS Chief Scientific Officer

The just enacted Federal 2016 Omnibus Budget Bill, which includes a $2 billion increase for NIH, represents significantly good news for advancing biomedical research including Down syndrome research.

Over approximately the past decade, the budget for NIH has remained essentially flat, translating to a more than 25% decline in actual NIH “research-buying” power. This has made securing funding for NIH research grants by researchers extremely difficult and, closer to home, created significant challenges in gaining increased NIH funding dedicated to Down syndrome research.

This newly enacted increase in NIH funding will enable funding for more NIH grants as well as significantly increased funding to address Alzheimer’s disease… all potentially good news for Down syndrome research.

In addition to work focused on NIH funding for Down syndrome throughout this year, LuMind RDS contributed to a recent final push for this increased funding, especially Alzheimer’s disease research, through our continuing membership and work together with Leaders Engaged in Alzheimer’s Disease leveraging together 80 member organizations, as a signatory on advocacy letters, which also specifically included Down syndrome reference, to the respective US House and Senate Appropriations committees’ leadership.

Among other important relevant appropriations in this new Federal budget:

• National Institutes on Aging (NIA) Alzheimer’s disease and related dementias research funding will increase to $936 million, a $350 million, or almost 60%, increase above Fiscal Year 2015
• NIA’s overall funding will increase by $400 million, more than 85% of that for dementia
• The Center for Disease Control (CDC) will have 3.5 million for its Alzheimer’s Disease (brain health) program, and
• Food and Drug Administration (FDA) funding will increase 5%, roughly $90-100 million more than House and Senate appropriators passed earlier this year.

Thank you for the momentum you’ve helped to create to bring the importance of increasing funding for all types of research to the attention of the government.

Please consider continuing to show your support for Down syndrome research with a donation during our Annual Appeal.

Clinton Campaign Announces Investment Plan for Alzheimer’s Disease

LuMind Research Down Syndrome Foundation applauds the development and announcement by the Clinton presidential campaign of a formal plan for new investment to prevent, treat, and make an Alzheimer’s disease cure possible by 2025, which includes a commitment to reach the $2 billion annual funding level for NIH’s dementia research. You can read more details on Clinton’s announced plan in the following article.

We join with many of our other colleagues and partners in the Down syndrome and Alzheimer’s disease communities in encouraging all of the presidential campaigns to develop and support formal proposals for advancing Alzheimer’s disease and dementia research.

This research is especially important for individuals with Down syndrome since virtually all develop the brain characteristics of Alzheimer’s disease earlier, by their 40’s, and the majority subsequently progress to earlier onset of the associated dementia. In November, NIH announced significant new grant awards to find Alzheimer’s biomarkers in Down syndrome.

LuMind RDS is the leading source of private funding for Down syndrome cognition research, including funding initiatives to identify and develop effective new therapies to prevent and halt the progression of the earlier onset Alzheimer’s disease in people with Down syndrome and help avoid the loss of gains they achieve throughout their lives. If you would like to support this research, please consider a donation during our Annual Appeal.

Run – Don’t Walk! Sign up for the 2016 United Airlines NYC Half on March 20th!

Interested in running the United Airlines NYC Half on March 20th, 2016, but didn’t get accepted through the lottery?  Don’t worry – we have bibs!  Guarantee your spot in the 2016 United Airlines NYC Half today by signing up to run with us today.

In order to commit to one of the ten charity spots that we have been offered for this year’s event, please visit our NYC Half Marathon page and follow the instructions provided.

We’ll need you to sign a commitment waiver and send it back to Kate Dochelli at kdochelli@lumindrds.org.  By signing this waiver, you are agreeing to raise the $1,000 fundraising minimum set forth by the NYRR for all official charity runners participating in the race.  Once we receive your signed waiver, we’ll add you to our list and you’ll be notified with instructions to register for the race. You will be responsible for covering your own registration fee. Please be advised that spots will be filled out on a first-come, first-served basis, so please do get your signed waiver back to us as soon as possible.

One last important piece of information: this year, we are pleased to announce that we are offering all of the NYC Half runners representing LuMind RDS the opportunity to take advantage of the NYRR’s Virtual Trainer program (at no cost to you).  The program is a fully customizable day-to-day training program that is specifically designed around each runners ability.  Virtual Trainer also will update and modify to each runners current performance within the 10 week period so that they will be training for their best possible performance.  Runners will also have access to a forum where they can post questions for NYRR’s coaches to answer. For more information about the NYRR Virtual Trainer program, visit the NYRR Virtual Trainer site and sign up for the “regular” training program.

If you are interested in using the Virtual Trainer program, please let Kate know no later than December 14^th!

Run – don’t walk – and sign up with us today!  What a great way to celebrate World Down Syndrome Day and raise money for vital Down syndrome cognition research.

We also invite you to pass this information along to anyone you know who may be interested in a spot for the race and wants to Race for the eXtraordinary!  

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.