National Down Syndrome Congress (NDSC) Conference 2019 @ David L. Lawrence Convention Center – Pittsburgh
Jun 27 – Jun 30 all-day


National Down Syndrome Congress

June 27-30, 2019

Pittsburg, PA

David Lawrence Convention Center


LuMind IDSC is proud to be the RESEARCH RALLY sponsor of the 2019 NDSC Conference. We are looking forward to reuniting with family and friends on June 27th in Pittsburg to continue collaborating in our shared goals of improving health and independence in individuals with Down syndrome.  The LuMind IDSC booth is located at 100.  Stop by to learn more about the exciting research, our Clinical Trial Network and the new LuMind IDSC initiatives for the Down syndrome community.


Friday, June 28, 1:30-3:00pm

Dr. James Hendrix (CSO) and Hampus Hillerstrom (CEO) are leading a presentation on Leading the Way in Down Syndrome Research: Why We Should Be Excited About The Future.  The presentation will be held in the City View Room 320, 3rd Floor.


Saturday June 29th, 7:00-9:00am

Start your Saturday at the LuMind IDSC Research Rally from 7-9am with a Q&A panel featuring DSMIG clinicians, breakfast bar, and opportunities to learn more about research with rally themed games and activities. The Research Rally is located in Ballroom B & C on the 3rd Floor.

Online Registration for the Research Rally is closed at this time.  If you would still like to join us Saturday morning please stop by booth 100 and sign up.

To find out more information about the conference go to the NDSC website. Our thanks to NDSC and the conference committee for their exceptional work organizing this important meeting.



Webinar: – Alzheimer’s Disease and Down Syndrome: What you need to know from diagnosis to living well
Jul 25 @ 3:00 pm – 4:00 pm

Join us on July 25th @ 3:00pm EST

To register for this free event click here

Beth Kallmyer, Vice President, Care and Support from National Alzheimer’s Association and Teresa Galbier, President/CEO, Alzheimer’s Association Rochester and Finger Lakes Region will cover several aspects of Alzheimer’s disease as it relates to individuals living with Down Syndrome including signs and symptoms, the importance of a cognitive baseline, caregiving strategies and living well.

REGISTER today to watch live session on 7/25 at 3 p.m. EST or an on-demand recording later.


Bags 4 Breakthroughs @ Scarlet Lane Brewing Company
Aug 3 @ 1:00 pm – 7:00 pm

2nd Bags for BREAKTHROUGHS Cornhole Tournament.

August 3th Doors Open at 1pm

Scarlet Lane Brewing Company

McCordsville, IN

Team Registration and Sponsorship Info:


We’ll start at 1pm then play for prizes in winner/loser brackets. Both amateur/casual and pro/expert players are welcome.
 Food and beverages will be available for purchase.
Don’t have to throw the bags to join in on the food, beer and music.  Come down and cheer on the teams and enter in to win one of our spectacular baskets up for grabs!!!

You will be missing out but if you have made other summer plans you can still participate by DONATING. Just click here to help fund research for individuals with Down syndrome

The Summer Double Dip
Aug 3 @ 5:00 pm – 10:00 pm

3rd Annual summer soirée benefitting
LuMind IDSC Foundation and The IDEAL School

August 3, 2019

5-10 pm
East Hampton, NY

To find out more about this event or make a donation please go to The Summer Double Dip webpage.

Children and adults with Down syndrome impress us everyday as they work hard to overcome challenges with health, learning, memory and speech at home, school and work. Your donation today advances the work of two organizations that are helping individuals with Down syndrome achieve their very best through education and research.

LuMind IDSC Foundation aims to improve health and independence for millions of people with Down syndrome worldwide through cutting-edge science to prevent Alzheimer’s onset, improve cognition, develop gene therapies and advance understanding.

Founded in 2004, LuMind RDS has granted $20 million to research that has led to additional NIH funding, the discovery of 10 therapeutic targets, 2 Down syndrome-specific cognitive assessment scales, and 14 interventional and observational clinical trials in 1300 participants. In 2017, LuMind IDSC launched the first Down Syndrome Clinical Trials Consortium planning effort to enable testing of promising treatments for Alzheimer’s currently in development for the general Alzheimer’s population also in large scale clinical trials in individuals with Down syndrome. We encourage you to visit https://www.lumindIDSC.org/ to learn more about the research that is ready to make a difference.

Logo for SDD

The IDEAL School of Manhattan, where Troy is a student, is a nurturing environment that values diversity and includes students from a variety of socioeconomic, religious, and ethnic backgrounds. They embrace the learning opportunities that are created by working with students of varied learning profiles, talents, and interests.

Visit https://www.theidealschool.org/ to see how your donation can make an impact for so many students in their school.


Webinar – Hearing Loss in Children with Down Syndrome with Dr. Cohen
Aug 12 @ 2:00 pm – 3:00 pm

In this webinar, Dr. Cohen will discuss the evaluation and management of hearing loss in children with Down syndrome. Areas of focus will include an overview of hearing loss, timing and types of hearing testing, classroom accommodations for school age children with hearing loss, therapeutic interventions and assistive listening devices.

The live webinar is 2 pm Eastern Time, 1 pm Central Time, noon Mountain Time, 11 am Pacific Time. Register Now.

Michael Cohen, M.D. is an Assistant Professor in the Department of Otolaryngology at Harvard Medical School, and Director of the Multidisciplinary Pediatric Hearing Loss Clinic at the Massachusetts Eye and Ear Infirmary. His clinical interests include pediatric otology, with a particular focus on pediatric hearing loss and chronic ear disease.

Dr. Cohen earned his medical degree from New York University School of Medicine. He completed an otolaryngology residency at Temple University Hospital and a 2-year ACGME accredited Pediatric Otolaryngology Fellowship at Children’s Hospital of Pittsburgh of UPMC. He holds a BA in Philosophy from Duke University. He is a Fellow of the American Academy of Otolaryngology-Head & Neck Surgery and is board certified in otolaryngology-head and neck surgery.

Dr. Cohen’s research interests include pediatric chronic ear disease and pediatric hearing loss including several current studies assessing clinical outcomes with hearing loss in Down syndrome. He has presented at numerous regional, national, and international meetings and courses on the subject of ear disease in children.

2019 DSDN Rockin’ Mom Retreat @ Gaylord Opryland Resort & Convention Center
Sep 6 – Sep 7 all-day

LuMind IDSC will be sharing a booth with SPECS4US!!


Stop by and learn what’s new on Down syndrome research while trying on a pair of glasses with extra-wide frame fronts and a lowered bridge. If you are unable to stop by the booth you can find our live organization panel on DSDN’s Facebook or Instagram pages.

For more information on the conference contact DSDN at info@dsdiagnosisnetwork.org



7th Annual Family Weekend at Great Wolf Lodge
Sep 20 – Sep 22 all-day

The LuMind IDSC Foundation Family Weekend provides families an opportunity to connect and meet other families with a loved one with Down syndrome while individuals with Down syndrome experience a fun-filled weekend amongst their friends.

We hope you will join us for the 2019 Family Weekend! 2018 was our largest Family Weekend yet with over 900 families that joined us at 17 Great Wolf Lodge locations – 16 in the United States and 1 in Canada. We anticipate an even larger turnout for 2019!

Visit the event page for more details, www.lumindidsc.org/2019familyweekend.

9th Annual Ashley Rose Classic @ Bull Run Golf Club
Sep 27 all-day

September 27, 2019

Bull Run Golf Club

Haymarket, VA

Please join us for the 9th Annual Ashley Rose Classic to benefit the LuMind IDSC Foundation on September 27, 2019 (Shotgun Start 9:00am). The LuMind IDSC is a charitable organization whose mission is to stimulate biomedical research that will accelerate the development of treatments to significantly improve cognition, including memory, learning and speech, for individuals with Down syndrome in order that they:

• participate more successfully in school;
• lead more active and independent lives;
• and avoid the early onset of Alzheimer’s Disease.

We will have a great day of golf at the beautiful Bull Run Golf Club in Haymarket, VA (www.golfbullrun.com). The event will include the following:

  • 4-person scramble
  • Continental Breakfast
  • Box Lunch
  • Beverage Cart
  • Putting Challenge
  • Longest Drive Prize
  • Closest to the Pin Prize
  • Cocktail Hour
  • Awards Dinner
  • 50-50 Raffle
  • 1st and 2nd place prizes
  • Silent Auction

Special Offer: Included with your online registration is a 1-year subscription to Golf Digest (a $10 value). Click here for offer and refund details.


Webinar: “Connecting families and those with Down syndrome to research that INCLUDEs them”
Sep 27 @ 12:00 pm – 1:00 pm





“The National Institutes of Health (NIH) has a longstanding program of research in Down syndrome (DS) to improve the quality of life for those with DS. In fiscal year (FY) 2018, in response to a Congressional directive, NIH launched a new DS research initiative called INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE).

The INCLUDE project (https://www.nih.gov/include-project), is addressing critical health and quality-of-life needs for individuals with DS, focusing on co-occurring conditions, such as Alzheimer’s disease, cancer, cardiovascular disease, immune system dysregulation, and autism, among others. NIH dedicated an additional $22.7 million for INCLUDE research in FY2018, bolstering total funding for DS research to $60 million last year. NIH Staff will provide updates on DS research funding in FY2019, highlighting some of the new INCLUDE projects.

In addition, NIH supports DS-Connect®: The Down Syndrome Registry(https://DSConnect.nih.gov), an online resource which collects basic health information about people with DS and connects them with research opportunities of interest to them. NIH Staff will describe how families can join DS-Connect and participate in INCLUDE-related research projects. In this way, families can help us better understand DS and develop effective treatments for DS-related conditions by being part of DS-Connect and informing researchers about the issues that matter to them.”

The webinar is at 12 pm ET, 11 am CT, 10 am MT, 9 am PT on Friday, Sept. 27.


Berlin Marathon
Sep 29 all-day


Visit our Crowdrise page to read the stories on why they run or to donate to the LuMind IDSC team to help raise money to support Down syndrome research.


For further information or to find out what other races we are involved in please email runfords@lumindidsc.org.