May
31
Thu
Webinar: A New Era For Alzheimer’s Biomarkers In Down Syndrome @ Webinar
May 31 @ 12:00 pm – 1:00 pm

Watch this live webinar for perspectives on Alzheimer’s Disease biomarkers in Down syndrome from leading experts, Dr. André Strydom and Dr. Juan Fortea, with the Londowns Consortium and the Down Alzheimer Barcelona Neuroimaging Initiative.

May 31, 2018
12pm EST
Register at http://bit.ly/AlzBiomarkers4Ds

 

Dr. André Strydom (MRCPsych, MSc, PhD)
King’s College LondonDr. Strydom is a Professor in Intellectual Disabilities at the world-leading Institute of Psychiatry, Psychology and Neuroscience at King’s College London, where his research is focused on mental disorders in adults with neurodevelopmental conditions, including Down syndrome and other genetic disorders.Professor Strydom is particularly interested in ageing-related conditions such as dementia in adults with Intellectual Disability and Down syndrome. He is the chief investigator of the LonDownS consortium http://www.ucl.ac.uk/london-down-syndrome-consortium which consists of several research groups from prominent London universities (KCL, UCL, QMUoL, Birkbeck and the Crick Institute) working on various aspects of Alzheimer’s disease in Down syndrome. One of the important aims of the consortium is to deliver the knowledge, tools and expertise that is necessary to enable clinical trials of treatment to prevent or delay the onset of dementia in individuals with Down syndrome.
Dr. Juan Fortea, Faculty Neurologist.
Hospital de la Santa Creu I Sant Pau and Fundació Catalana Síndrome de Down.Dr. Fortea has extensive experience in clinical practice and in medical research, whose focus is the early diagnosis of neurodegenerative diseases, particularly Alzheimer’s disease as well as its development in Down syndrome.Dr. Fortea’s PhD specialization was the study of pre-­‐clinical Alzheimer disease in sporadic and familial cohorts through the use of multimodal MRI and CSF studies. Today, he is the principal investigator of multiple research projects in the field of Alzheimer’s disease and Down syndrome, and he leads the Neuroimaging Laboratory within the St Pau Memory Unit. One of his most significant contributions is the creation and implementation of a health plan for the screening of Alzheimer’s disease in adults with Down syndrome that includes longitudinal assessments and a comprehensive biomarker research program. This cohort is one of the largest in the world complete with multimodal biomarkers, including MRI and PET imaging, plasma and CSF as well as polysomnography tests.
Jun
26
Tue
Webinar: Pathways to Novel Cognition Targets with Potential to Help People w/ Ds
Jun 26 @ 3:00 pm – 4:00 pm

Watch this live webinar on Pathways to Novel Cognition Targets with Potential to Help People with Down Syndrome with Dr. Craig Heller, PhD, Stanford

June 26, 2018

3pm EST

Register at http://bit.ly/DsResearchFromStanfordU

The ability to learn and remember is an important aspect of human life that is more difficult for individuals with Down Syndrome. Basic research, however, is leading to new approaches that have the promise of improving impaired cognitive functions. Some of these leads involve understanding the roles that sleep and daily rhythms play in our ability to form long-term memories. Other leads involve understanding and altering the neurochemical pathways involved in memory processing. Still other leads come from molecular knowledge of how genes triplicated in DS influence brain development. In his Webinar, Dr. Heller will discuss recent progress in these areas.

Aug
9
Thu
Research and Retreat Weekend 2018 @ Cincinnati Great Wolf Lodge
Aug 9 – Aug 12 all-day

Research and Retreat Weekend 2018

One weekend, one location, lots of families, activities, learning and fun– all the weekend of

August 9-12, 2018 at the Cincinnati Great Wolf Lodge!

IMDSA’s Research & Retreat is teaming up with the International Down Syndrome Coalition (IDSC) Family Weekend at the Cincinnati Great Wolf Lodge in Ohio. IMDSA and IDSC’s annual events are combining into one fabulous weekend!

Join LuMind RDS’ President and CEO, Hampus Hillerstom, on Saturday 8/11 at noon for his presentation, “On The Verge Of Breakthroughs”.

 For more information, visit https://www.imdsa.org/research-and-retreat

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
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.

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.

 

 

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

 

 

Sep
27
Fri
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.

 

Oct
19
Sat
2019 Down Syndrome Association of Connecticut Annual Convention @ Water's Edge Resort and Spa
Oct 19 all-day
DS ACT

Join LuMind IDSC at the 34th DS ACT Convention on October 19th at the
Water’s Edge Resort and Spa

Stop by our booth to learn more about the exciting research that is getting closer to clinical trials and the new LuMind IDSC initiatives for the Down syndrome community.

James Hendrix, Ph.D., will also be speaking at the social hour at 3:45.  Dr. Hendix will be presenting on how the momentum around research for Down syndrome has grown dramatically in recent years. The NIH, the pharmaceutical industry, researchers and clinicians, research-focused foundations, and families are increasingly rallying behind research to spur new treatment options for our loved ones with Down syndrome. There are many novel, promising activities in Alzheimer’s disease, sleep apnea, autoimmune conditions and more.  We are entering a time where families and affiliates are now adding research to their most important topics along with education, early intervention inclusion, and advocacy.

He will also provide an update on some research advances, including work supported by the LuMind IDSC Foundation. He will also share reasons and resources for families to rally behind Down syndrome research. Dr. Hendrix is also happy to take questions on Down syndrome research.

To find out more information about the conference, go to the DS ACT website at mydsact.org  Our thanks to DS ACT for inviting LuMind IDSC and for the conference committee for their exceptional work organizing this conference.

 

 

Nov
2
Sat
DSACO Down Syndrome Research Symposium @ Marriott Columbus University Area
Nov 2 @ 8:30 am – 12:00 pm