Mar
19
Thu
World Down Syndrome Day 2020 – Watch Me Soar
Mar 19 – Mar 27 all-day

World Down Syndrome Day (WDSD) is a global awareness day selected to signify the uniqueness of the three copies of the 21st chromosome. Join us in celebrating individuals with Down syndrome and their accomplishments. Let’s show the world how they soar!

Please visit www.lumindidsc.org/soar for more information.

 

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.

Jun
4
Thu
AADMD 2020 Conference – Cancelled @ Wydham Pittsburgh Down Town
Jun 4 – Jun 6 all-day

AAMD Logo

American Academy of Developmental Medicine & Dentistry (AADMD) is a non-profit organization of interdisciplinary medical professionals including physicians, dentists, optometrists, neurologists and other clinicians committed to improving the quality of healthcare for people with IDD.

Since 2002, the AADMD has connected clinicians across the world and prepared them to face the unique challenges in caring for people with IDD. The organization provides curriculum to schools, IDD training for clinicians and specialized information to families and caretakers in language that is easy to understand. Above all, AADMD aims to make sure that no person with IDD is left without access to quality health services.

 

Jun
25
Thu
National Down Syndrome Congress (NDSC) Conference 2020 – Cancelled @ Hyatt Regency New Orleans
Jun 25 – Jun 28 all-day

 

National Down Syndrome Congress

LuMind IDSC is proud to announce and sponsor the 2nd annual RESEARCH RALLY of the 2020 NDSC Conference. We are looking forward to reuniting with family and friends on June 26th in New Orleans to continue collaborating in our shared goals of improving health and independence in individuals with Down syndrome.   Stop by 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.

 

 

Jul
26
Sun
Alzheimer’s Association International Conference (AAIC) @ Amsterdam RAI Exhibit and Event Complex
Jul 26 – Aug 1 all-day

AAIC 2020 will bring together international investigators, clinicians and care researchers to discuss the latest studies, theories and discoveries that will help bring the world closer to breakthroughs in dementia science.

LuMind IDSC’s Cheif Scientific Officer, Dr. James Hendrix will be presenting on “Engaging the Down Syndrome Community: Overcoming Barriers to Clinical Trial Recruitment” and it is scheduled for Monday, July 27th at 4:15 – 5:45 pm.

In addition, our scientific poster with DGI has been accepted. Understanding meaningful symptoms and challenges in people with Down syndrome and dementia: A qualitative study of caregivers’ perspectives.

 

Sep
11
Fri
2020 DSDN Rockin’ Mom Retreat @ Gaylord Rockies Resort and Convention Center
Sep 11 – Sep 12 all-day

LuMind IDSC will be an exhibitor at the 2020 DSDN Rockin’ Mom Conference.  Stop by and let us brief you and give you an overview of our services and research opportunities.

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

 

 

Sep
18
Fri
8th Annual Family Weekend at Great Wolf Lodge
Sep 18 – Sep 20 all-day

We know many of you have been waiting for an update on plans for the 2020 Family Weekend and we thank you for your patience and understanding. We’ve been working hard to decide the best course of action and have had many conversations with our staff, Great Wolf Lodge, and our contract negotiating team. Due to the uncertainties surrounding COVID-19, predictions of a second wave this fall, and the varying restrictions by state, we have decided to transition the 2020 Family Weekend to a virtual event for all 18 Great Wolf Lodge locations. This has been a difficult decision but the safety of our families and especially our loved ones with Down syndrome is of the utmost importance.

We are very excited to be hosting the virtual event September 18 and 19. Stay tuned for details. We hope you will consider joining us for the virtual event!

And more good news – we are already planning for the 2021 in-person event the weekend of September 17-19! We anticipate 2021 being our biggest and best year to date!

For families that booked a room for the 2020 Family Weekend, The following 3 options listed below are available to you.
NOTE: Please contact Great Wolf Lodge by May 29, 2020. After this date, all reservations will be cancelled.

1. Move your reservations from the 2020 block and book into one of the 2021 blocks now:

LuMind IDSC families can call reservations at 800.905.9653 and ask that their 2020 reservation be moved to the 2021 LuMind IDSC Family Weekend block (September 17-19. 2021). Reservations can only be made by calling the Great Wolf Lodge reservation line. Online reservations are not currently available. 

Families that would like to switch the property that they are staying at (for example the existing reservation is in Garden Grove and they want to switch to Manteca) they will need to cancel their existing reservation and move that to the new 2021 block in the new location.

For the new code to book your room please email mslape@lumindidsc.org.

2. Cancel your reservation in 2020 without rebooking:

LuMind IDSC families will have the opportunity to call our central reservations department at 800.905.9653 and either cancel, move or re-book their reservation to a new date by 05.29.2020. If your reservation is in the 2020 block and is not canceled by 05.29.2020, Great Wolf Resorts will automatically start the process to cancel/refund on 06.01.2020. This automated process will make it easier for those families who want to cancel and get their full refund without having to call in to do it and reducing the number of calls that their central reservations department receives. The full refund will be processed about 10-14 days after 06.01.2020.

3. For families that have a reservation for 2020 and still want to make a reservation for the same weekend:

These guests will have to call central reservations 800.905.9653 and ask for their reservation to be updated under the new PPC (Preferred Pack Club) rate code IDSC655A. This special code for LuMind IDSC family weekend alums is redeemable for the same weekend OR anytime during 2020 and 2021. The exclusive discount rates do vary depending on time of the year and day of the week.

Thank you for your understanding. Stay healthy. Stay safe.

Michelle Slape
LuMind IDSC Director of Family Weekend