Mar
1
Fri
7th Annual Night of Art & Blues for LuMind RDS @ The Brick
Mar 1 @ 8:00 pm – 11:00 pm

The Brick @ 1145 Northside Blvd, South Bend
8:00 pm — March 1, 2019

It is going to be a great night, with over 250 people, an open bar, lots of great food, live blues band.

Tickets start at $50pp.  For more information and to purchase tickets to the Arts & Blues event please go to www.artnblues.com.

 

 

 

 

Mar
7
Thu
Webinar: Implant for Severe Sleep Apnea: Where are we now?
Mar 7 @ 4:00 pm – 5:00 pm

Webinar: Implant for Severe Sleep Apnea: Where are we now?

 

Join us for a free live webinar on Thursday, March 7 @4pm EST.

Find out more about hypoglossal stimulation and how it can be used to treat sleep apnea. The implant is currently FDA-approved in adults, but the clinical study led by Dr. Hartnick is focused on expanding access for children. Dr. Hartnick will also share a hypothesis with very preliminary data on how this might help with speech.

To register, visit http://bit.ly/SleepApneaAdvances

Image may contain: 1 person, smiling, text
Mar
17
Sun
2019 New York City Half Marathon
Mar 17 all-day

Team LuMindRDS Runners as we run one the streets of NYC on March 17th!  If you would like to be a part of our 2019 team email RunforDs@lumindrds.org

Click here to learn more about United Airlines NYC Half Marathon 

   Angela Amick - post race Matt Amick - post race Stephanie Mallick

Mar
20
Wed
The Up of Down: An Insight Into the World of Down Syndrome @ NYU Winthrop Research & Academic Conference Center
Mar 20 @ 1:30 pm

You’re invited to the Conference on the

Progress of Down Syndrome Research

Wednesday, March 20, 2019

We invite you to attend this great research symposium on March 20 @ 1:30pm in Mineola, New York organized by our friends at Alexander’s Angels featuring great research that has been supported by LuMind RDS. It’s a great opportunity to hear about progress in Down syndrome research directly from the researchers. The symposium is open to families and healthcare providers. Space is limited so you can reserve your spot today online at winthrop.cloud-cme.com.

The Up of Down: An Insight into the World of Down Syndrome is a Joint Provider Conference with Alexander’s Angels, Inc. and NYU Winthrop Hospital. The focus is to highlight the Down syndrome research progress and consists of speakers from a broad spectrum of specialties. Current findings will be presented by faculty from prestigious universities with affiliated hospitals on their campus. The conference will cover a wide range of topics including plans to explore a broad number of topics related to Down syndrome.

Keynote Speaker

  Roger Reeves, PhD.

Rethinking Alzheimer Disease in the Context of Down Syndrome

William Mobley, MD, PhD

Gene Dosage in Cellular Models of Trisomy 21

Stefan Pinter, PhD

Review the FDA Approved Study Looking at the Effect of Hypoglossal Nerve Stimulation in Treating Children Ages 10 to 21 with Down Syndrome and Significant Obstructive Sleep Apnea (OSA)

Christopher Hartnick, MD, MS

Learning Objectives

At the end of this symposium, learners should be able to:

• Discuss improvements in learning and memory in individuals with Down syndrome

• Assess and discuss why we see early onset Alzheimer’s in individuals with Down syndrome

• Explain research findings regarding cellular models

• Discuss common developmental and behavioral observations of individuals with Down syndrome

• Identify medical predispositions in individuals with Down syndrome

• Benefits of Hypoglossal Nerve Stimulation

• Discuss the effects of Down syndrome on the immune system

 

Please register at winthrop.cloud-cme.com

SPACE IS LIMITED. REGISTER EARLY.
NYU Winthrop Research & Academic Conference Center

Main Level

101 Mineola Boulevard

Mineola, NY 11501

Registration is FREE and includes educational materials, refreshments and CME-CE credit certificate.

Mar
21
Thu
WDSD – Virtual Run/Walk
Mar 21 all-day

WDSD V RW Banner 2016

Join the WDSD 321 Virtual Run/Walk – Actively Support Ds Research

World Down Syndrome Day (3/21) and, here at LuMind Research Down Syndrome, we’re wondering how YOU plan to celebrate.

Won’t you join us in *actively* showing your support of Down syndrome cognition research by signing up to participate in the World Down Syndrome Day 321 Virtual Run/Walk event?  This “virtual” event is an opportunity for people across the world to come together to advocate and self-advocate for persons with Down syndrome. We have a goal to unite a team of supporters across the world in raising funds for Down syndrome research by team fundraising throughout the month of March 2019.

To participate, we ask that you commit to taking part in some kind of physical activity throughout the month of March involving any sort of variation of the numbers 3-2-1.  Then on WDSD (3/21) post pictures, or video, of your 3-2-1 activity on our Facebook Group.  Participate on your own, or rally a team to help you participate and fundraise.  After registering, we encourage you to set up your fundraising page and ask friends and family for their support.  We have some great fundraising prizes for this year’s teams

Anyone who registers for the event will receive a cotton t-shirt and a medal, but only those registrations received before March 1 are guaranteed receipt of their shirt by March 21, 2019.

Some ideas:

  • Commit to walking or running 3.21 miles
  • Swim 321 laps in the pool
  • Hop on the elliptical or Stairmaster for 32.1 minutes

Don’t be afraid to get creative! We’ve had participants send us their photos of going for a run along Route 321 or commit to running 3.21 miles EVERY day throughout the month of March!

Whatever activity you decide to do from lacing up your running shoes, snap on your helmet, or dive in as part of the World Down Syndrome Day 321 Virtual Run/Walk and support cognition research!

slide-1-1133

Mar
23
Sat
MDSC 2019 Annual Conference @ DCU Center
Mar 23 @ 8:00 am – 4:30 pm

Shaping the Future: The State of Down Syndrome Research Today

The 35th Annual Conference at the DCU Center in Worcester, MA on March 23rd.

We’re proud to partner with the Massachusetts Down Syndrome Congress (MDSC) team to collaborate and sponsor their first research-focused event for families — Shaping the Future: The State of Down Syndrome Research Today.

This year, the community will gather to delve deep into the promising developments in Down syndrome research and the exciting potential it has for the future with session topics including:

innovative clinical trials and studies underway nationwide that have promise to make a difference in people’s lives

the latest research on sleep apnea, nutrition and obesity behavior, inclusive education, clinical care medical and neurodevelopmental conditions, speech and language pathology, and Alzheimer’s disease

information on the latest groundbreaking research into “silencing the extra chromosome.”

how to participate in Down syndrome-specific research studies, including the National Institute for Health’s DS Connect portal.

The offerings address the needs of people with Down syndrome from childhood through aging adult with useful information for self-advocates, siblings, grandparents, support providers, education and medical professionals, and researchers.

To learn more and take advantage of the early-bird registration rates, visit the conference website before March 11.

Apr
4
Thu
LuMind IDSC Presents at the 2019 NDSS Adult Summit @ David L. Lawrence Convention Center
Apr 4 – Apr 6 all-day

 

Please join LuMind RDS at the 2019 NDSS Down Syndrome Adult Summit in Detroit, Michigan April 4 – 6, 2019. The summit will be hosted at the Detroit Marriott at the Renaissance Center.

The 2019 NDSS Down Syndrome Adult Summit is open to all individuals who play any role in the life of individuals with Down syndrome with a specific focus on caregivers, family members, professionals, and individuals with Down syndrome.

 

SATURDAY, APRIL 6 at 10:45 a.m.

DS-CTN, How Clinical Trial Networks Speed up the Availability of Treatment Options for People with Down syndrome (H)

James Hendrix, Chief  Scientific Officer, LuMind IDSC Foundation

 

Breakout Room: Marquette A&B

With a global population of greater than 5.3 million people, Down syndrome (DS) represents a large population with many unmet medical needs. LuMind is responding to this need with the establishment of the Down Syndrome-Clinical Trials Network (DS-CTN) to facilitate more clinical research in the DS population. In this session, the clinical trials process will be explained and a description of the first study in the DS-CTN, the Longitudinal Investigation For Enhancing Down Syndrome Research (LIFE-DSR) study. It is estimated that by age 55–60 years at least 70% of people with DS will develop Alzheimer’s dementia. An important question is whether it is possible to prevent or mitigate cognitive deficits associated with AD. The LIFE-DSR study will observe people as they age to set the stage for future treatment trials in Alzheimer’s.

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 

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

2019 NDSC Conference

June 27-30, 2019

Pittsburg, PA

David Lawrence Convention Center

 

When you say research we say Rally! Start your Saturday at the LuMind IDSC Research Rally from 7-9am. Enjoy a light breakfast, learn about current research projects, get up to date info from a panel discussion with Drs Capone, Chicoine, Hendrix and Skotko, and participate in pep-rally activities that will keep you engaged in research all year.

You may RSVP starting Monday, March 25th. You will need your convention registration number.  To register for the research rally please go to https://www.ndsccenter.org/annual-convention/researchmedicalcare/research-rally-rsvp/

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 30th in Pittsburg to continue collaborating in our shared goals of improving health and independence in individuals with Down syndrome.   Swing by the LuMindRDS Booth to learn more about the exciting research, our Clinical Trial Network and the new LuMind IDSC initiatives for the Down syndrome community.

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.