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Upcoming Webinars

LuMind IDSC frequently hosts free webinars to keep the Down syndrome community and the research community up-to-date on the latest in Down syndrome research, Down syndrome resources, medical conditions and treatments, caregiver concerns, and mental health. We invite you to browse our calendar, register in advance, and participate!

GnRH REPLACEMENT THERAPY IN ADULTS WITH DOWN SYNDROME: STUDY FINDINGS & NEW PERSPECTIVES

WEDNESDAY, FEB. 8
12 noon ET | 11 am CT  | 10 am PT | 5 pm CET

Research recently published in the journal Science raises the possibility that a currently-approved drug may offer an effective boost in cognition and smell when administered to people with Down syndrome.  The new research is based on a theory that as their brains develop, people with Down syndrome tend to lose special neurons that make an important protein, called gonadotropin-releasing hormone or GnRH.

Dr. Vincent Prevot and Dr. Nelly Pittleoud will present the findings of their pilot study on GnRH replacement therapy in 7 adults with DS as a means to boost cognition and smell in people with Down syndrome, as well as the protocol for the new double-bind, placebo-controlled study that will be launched in spring 2023. Following the presentations there will be Q&A sessions with the researchers.

Register in advance for this webinar here. (It’s free!)

After registering, you will receive a confirmation email containing information about joining the webinar.

myDSC WEBINAR SERIES - TEACHING HEALTHY BOUNDARIES AND RELATIONSHIPS

THURSDAY, FEB. 9
1 noon ET | 12 pm CT  | 10 am PT |

Healthy relationship boundaries are an important skill for us all. We are seeing more and more examples in our culture of those who have crossed lines. Even though people with intellectual and developmental disabilities are sexual beings, just like everyone, they also need the information and skills to navigate these waters and learn what’s okay and not okay in various settings. This webinar will explore tips and tools for addressing sexuality one-on-one with your children. We will explore why this topic can be difficult to approach and useful tools that will help you become more comfortable and confident and communicate about this sensitive topic.

myDSC members can register in advance for this webinar here. If you are not yet a myDSC member, you can join for free here.

After registering, you will receive a confirmation email containing information about joining the webinar.

Past Webinars

NEW IMMUNE-BASED TREATMENTS FOR REGRESSION DISORDER

Down Syndrome Regression Disorder (DSRD) is an uncommon phenomenon in persons with Down syndrome where there is a sudden loss of cognitive abilities, insomnia, hallucinations, delusions, slowness in movements and processing speed, catatonia, and mutism or changes in language production. The cause of this condition is unknown although a minority of individuals with this symptom cluster have been found to have brain inflammation which has been responsive to immune treatments. An upcoming clinical trial, being led by doctors at the Children’s Hospital Los Angeles and the University of Colorado, will be testing new immune-based treatments for this condition. This webinar will be presented by Jonathan Santoro, MD, who is the Medical Director of the Neuroimmunology and Demyelinating Disorders Program at Children’s Hospital of Los Angeles, and will focus on the clinical symptoms, necessary testing, and therapeutic advances in DSRD.

RESULTS OF THE MEMANTINE FOLLOW UP STUDY

The results of Memantine Follow-up study were published in the British journal, The Lancet Neurology earlier this year. This Phase 2, double-blind placebo controlled clinical trial was designed to test the safety and potential benefit of the FDA-approved, Alzheimer’s disease drug memantine on enhancing cognitive skills in adolescents and young adults with Down syndrome. The purpose of this webinar will be to meet with the principal investigator of this study, Dr. Alberto Costa, who has been working on Down syndrome research for 26 years. Dr. Costa is a physician, neuroscientist, and the father of a 27-year old woman with Down syndrome. He will explain how the Memantine Follow-up study was conceived, the study results, and share insights and new ideas for future studies.

View the webinar recording online here.

Past myDSC Webinars

These webinars are available on-demand to all myDSC members. If you are not yet a member, learn more about myDSC and join for free today!

Mental Health at the Holidays for People with Down Syndrome and Their Families

The winter holidays can be both a joyful and challenging time. In this webinar, we will be discussing ways to support the mental health of people with Down syndrome and their families. Topics discussed will include: transitioning from school into the holiday break, strategies for managing emotions/stress , and coping with grief and loss around the holidays.

Bias in the Healthcare System: Advocating for People with Down Syndrome

Progress has been made in reducing bias against people with Down syndrome and intellectual disabilities. However, significant bias persists as evidenced by the experiences of many people with intellectual disabilities during the COVID-19 pandemic. In this presentation, Brian Chicoine, MD will discuss bias in health care, define ableism, share clinical examples, and discuss strategies to address bias at the individual and system levels.

Sleep in Children with Down Syndrome

The Sleep in Children with Down Syndrome webinar discusses the current knowledge and knowledge gap regarding sleep in individuals with Down syndrome. The implications of obstructive sleep apnea and available treatments will be reviewed, including strategies to encourage CPAP use.

Skin Conditions and Down Syndrome Part 2

In this two part lecture series, participants will learn about skin conditions seen in children and adults with Down syndrome. This interactive presentation will cover common skin conditions such as dry skin and lips, folliculitis, hidradenitis suppurativa, alopecia areata, and infections such as athlete’s foot and onychomycosis. Dr. Rork will also review less common but important skin conditions, like syringomas and elastosis perforans serpiginosa.

Skin Conditions and Down Syndrome Part 1

In this two part lecture series, participants will learn about skin conditions seen in children and adults with Down syndrome. This interactive presentation will cover common skin conditions such as dry skin and lips, folliculitis, hidradenitis suppurativa, alopecia areata, and infections such as athlete’s foot and onychomycosis. Dr. Rork will also review less common but important skin conditions, like syringomas and elastosis perforans serpiginosa.

Visit myDSC to view all available webinars.