Monthly Archives: December 2015

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  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 14th!

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!