May
5
Sun
2019 Pittsburg Marathon Series
May 5 all-day

 

Join LuMind RDS Runners at the Pittsburg Marathon Series on May 5th!

Join us for our 2nd time at this amazing race for a weekend full of family fun and races!  With so many distances to choose from – full marathon, half-marathon, five-person relay, 5K, kids one-mile, and pet walk – you’re sure to find the race that’s right for every member of the family!

Click here to learn more about Pittsburg Marathon Series 

2019 Flying Pig Race Series
May 5 all-day

Join LuMind RDS Runners at the Flying Pig Race Series on May 5th!

The Cincinnati Flying Pig Marathon is a beautiful course, which flies along the streets of Cincinnati, Covington, Newport, Mariemont, Fairfax, and Columbia Township. Join us for the 5K, 10K, Half, Full, or Relay Marathon.

Click here to learn more about Flying Pig Race Series 

May
30
Thu
Webinar: – LIFE-DSR – A National Launch for the First Natural History Study in Adults with Down Syndrome
May 30 @ 4:30 pm – 5:30 pm

Webinar: – LIFE-DSR – A National Launch for the First Natural History Study in Adults with Down Syndrome

Join us on May 30th @ 4:30pm EST

To register for this free event click here

Dr. James Hendrix, LuMind IDSC Chief Scientific Officer, discusses the launch of the LIFE-DSR (Longitudinal Investigation for Enhancing Down Syndrome Research) study in the attached blog post. This is a first for LuMind IDSC and represents an important milestone for Down syndrome research. The LIFE-DSR study will be the first study run in LuMind’s DS-CTN (Down Syndrome – Clinical Trials Network) which includes 11 research sites in 9 states.

Read more here: https://www.lumindrds.org/life-dsr-study/

Ready to learn even more and ask Dr. Hendrix questions? Great! Register and join our webinar, LIFE-DSR, where you will learn why LuMind IDSC is launching the first natural history study for adults with Down syndrome and why this is a game changer for Down syndrome clinical trials.

LuMind_IDSC_Website: https://zoom.us/webinar/register/1215577677139/WN_vbrMgPfzTvmsFOctUIR7gQ

Jun
6
Thu
T21RS International Conference 2019 @ CosmoCaixa
Jun 6 – Jun 9 all-day

 

LuMind IDSC is a Founding sponsor of T21RS and a main sponsor of this important meeting of international research teams focused on Down syndrome. LuMind IDSC is presenting a scientific poster on the upcoming LIFE-DSR study.

The Third International Conference of the Trisomy 21 Research Society will take place in Barcelona. The biennial T21RS International Conference is the premier scientific meeting for Down syndrome research, attracting basic and clinical scientists and practitioners from around the world. With plenty of opportunities for networking and debating, this informal international meeting will bring you up to date with current research and thinking regarding Down syndrome.

We hope to meet you at our booth or at our presentation:

Saturday, June 8, 2019

12:15   Parent-reported needs for the development of research on Down syndrome (10 minutes presentation + 20 minutes debate)
Hampus Hillerstrom (LumindRDS, USA).
Results from the parents’ surveys on knowledge and personal experiences towards Down syndrome studies. Conducted by LumindRDS in the USA and Fondation Lejeune in the European Union.

For the full program please click here.

Jun
27
Thu
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.

 

 

Jul
25
Thu
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.

 

Aug
3
Sat
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:

http://events.lumindrds.org/B4B

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.

 

Aug
12
Mon
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.

Sep
6
Fri
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