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
Nov
16
Sat
North Carolina Down Syndrome Conference @ Northern Wake Tech
Nov 16 @ 8:30 am – 4:30 pm

The 2019 North Carolina Down Syndrome Conference covers the lifespan of an individual with Down syndrome and is a valuable resource serving all audiences. The conference includes a plenary speaker, resource exhibits, networking lunch, and 18 breakout sessions that bring information and resources to families, educators, healthcare providers, and older teens and adults with Down syndrome.

Nov
19
Tue
Kansas City Down Syndrome Guild Down Syndrome Research Update @ DSG Office
Nov 19 @ 6:00 pm – 7:30 pm

LuMind IDSC Foundation Chief Executive Officer Hampus Hillerstrom and Chief Scientific Officer Dr. James Hendrix will be sharing important information about critical research being conducted to improve the lives of people with Down syndrome.

Dec
4
Wed
Clinical Trials on Alzheimer’s Disease @ Hilton Bayfront San Diego
Dec 4 @ 4:00 pm – Dec 8 @ 2:30 pm

The development of the next generation of Alzheimer’s disease treatments is among the most important health needs worldwide, but presents huge challenges. The goal of the meeting is to bring together today’s worldwide leaders in the treatment of Alzheimer’s disease to discuss new results, candidate therapeutics, and methodological issues important to the development of the next generation of Alzheimer’s disease treatments.

Clinical trial teams from worldwide centers will report on their efforts to identify new biomarkers of disease as well as more sensitive clinical assessment tools to identify those at risk for AD, to predict progression, and assess the effectiveness of new treatments.

The future of clinical trials may lie in revisiting all drugs known to be safe and evaluate their relevance in AD treatment. We learned at CTAD 2018 of the importance of non-pharmaceutical trials and that anti-amyloid treatment for AD should begin early on in the disease process. Furthermore we also learned more of another pathway with Tau Biomarkers, and their implications for AD along with combination therapeutics and phase 3 clinical trials results. Again in 2019 Clinical teams will present their population studies on subjects in the early stage of the disease or even at the asymptomatic stage.

CTAD 2019 will highlight the latest on trying to get these trials off the ground.

Overall, the aim of the conference is to overcome the hurdles and speed the development of effective treatments.

Feb
27
Thu
Down Syndrome Affiliates In Action (DSAIA) 2020 Conference @ Rosen Plaza
Feb 27 – Mar 1 all-day

 

DSAIA

LuMind IDSC Foundation is proud to be a Bronze sponsor of the 2020 DSAIA Conference. We are looking forward to reuniting with our Down syndrome affiliates on February 27th in sunny Orlando, Florida to continue collaborating in our shared goals of improving health and independence in individuals with Down syndrome.   Swing by the LuMind IDSC Foundation @ Booth # 5 to learn more about the exciting research, LIFE-DSR and the new LuMind IDSC initiatives for the Down syndrome community.

Join Our Workshops

 

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

May
4
Mon
NDSS 2020 Virtual Adult Summit Conference
May 4 – May 28 all-day

 

LuMind IDSC’s Recorded Presentations
At NDSS Virtual Summit

If you were unable to join our live presentations and LuMind IDSC’s Lunch and Learn you can still register and Save 21% with the LuMindIDSC2020 code.

LuMind IDSC Scheduled Sessions:

Join our Chief Scientific Officer, Jim Hendrix to find out what LuMind IDSC is doing to prevent Alzheimer’s in Down Syndrome.

Advances in Down Syndrome Research with Hampus Hillerstrom, LuMind IDSC’s President & CEO

Down Syndrome & Sleep and Sleep Apnea with CSO, James Hendrix.

Virtual Lunch and Learn with NDSS and LuMind IDSC!

Join us for the first NDSS Adult Summit Virtual Lunch and Learn, hosted and moderated by LuMind IDSC, where you get to decide what you want to hear from a panel of speakers with over four decades of experience as caregivers, healthcare providers, and Alzheimer’s research for adults with Down syndrome.

Dr. James Hendrix, the Chief Scientific Officer of LuMind IDSC will present your questions to the panelists who will answer as many as they can that day.

Panelist speakers: Dr. Brian Chicoine Co-founder and Medical Director of the Advocate Medical Group Adult Down Syndrome Center, Dr. Anna Burke, Geriatric Psychiatrist and the Director of Neuropsychiatry at Barrow Neurological Institute, Dr. Matt Janicki, Co-chair of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) and Phyllis Ferrell, Head External Engagement, Alzheimers, and Neurodegeneration at Eli Lilly and Company. Founder Women Against Alzheimer’s

Stop by our Virtual booth at https://www.ndss.org/virtual-exhibit-booth/lumind-idsc/

LuMind IDSC and NDSS Focus Groups

LuMind IDSC and NDSS are seeking parents or caregivers of individuals with Down syndrome to participate in a focus group aimed to gather information regarding experiences, motivations and thoughts pertaining to aging with Down syndrome to increase our understanding and shape future initiatives and services.

Participants will be asked to provide feedback, thoughts and reactions on individual motivation, communication, social inclusion, employment, health and health habits related to aging with Down syndrome.

The focus groups will take place through a Virtual Zoom Call on the following dates and times. To sign up, please click here.

Focus Group June 4th @  3:30-4:30 pm EST

The 2020 NDSS Virtual Adult Summit is open to all individuals who play any role in the life of individuals who have Down syndrome or are within the IDD community with a specific focus on caregivers, family members, professionals, and individuals with Down syndrome. Our Virtual Summit will take place on various dates and times throughout May.

This Virtual Summit will cover important and critical topics for all adults with Down syndrome and IDD. Speakers and topics will align with NDSS’ comprehensive programs and pillars – including healthcare, research, inclusive education, community integration, caregiving, economic self-sufficiency, aging-related health issues, and employment.

To register for the NDSS Virtual Summit please click here and don’t forget to use our 21% discount code LuMindIDSC2020.

 

May
13
Wed
MDSC 2020 Virtual Conference
May 13 – Jul 31 all-day

Trailblazers

Paving the Way to a Bright Future Through Innovative Research

MDSC 36th Annual Virtual Conference

Register today so you will be one of the first people to access the virtual conference when it goes live in mid-June!

 

 LuMind IDSC’s recorded presentations

Accelerating Research in Down syndrome 

Hampus Hillerstrom, President & CEO, LuMind IDSC; Stefan Pinter, PhD, Assistant Professor, University of Connecticut Health

Research advances in Alzheimer’s disease, sleep, speech, cognition and auto-immune conditions show potential to improve the health of people with Down syndrome (DS). The Down Syndrome – Clinical Trial Network and the clinical trial, the LIFE-DSR Study, have been launched to accelerate DS research. Results from recent family surveys on sleep apnea and independence and the launch of the new online resource for families, the Down Syndrome Clinic 2 You (DSC2U), will be included. Dr. Pinter will cover recent work evaluating the potential to silence chromosome 21 in cells. New approaches to remaining challenges toward this goal will be addressed.

Alzheimer’s Disease in Down syndrome: What We Know, What Gives Us Hope for the Future 

James Hendrix, PhD, Chief Scientific Officer, LuMind IDSC

Individuals with Down syndrome face a higher risk for Alzheimer’s disease later in life, but what can we learn from current research and what gives us hope for the future? This session will provide an overview of recent progress in Alzheimer’s disease research and how this could help people with Down syndrome in the future.

 

Register today so you will be one of the first people to access the virtual conference when it goes live in June. You’ll receive a link and personal custom password via email for the site. The registration fee is only $29.99 per household and will include access to all the presentations that you can view at your convenience through the end of the 2020 calendar year.