Webinars

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.

In this webinar, Dr. Vincent Prevot and Dr. Nelly Pittleoud 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.

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.

In this webinar, Dr. Vincent Prevot and Dr. Nelly Pittleoud 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.

The Clematis study was the first industry-sponsored, Phase 2, double-blind, placebo-controlled clinical trial in Down syndrome. The study was designed to evaluate the safety and potential benefit of basmisanil treatment on the intellectual disability associated with Down syndrome. Earlier this year, the study results were published and discussed in a scientific journal.

The purpose of this webinar will be to meet with the authors who will explain the Clematis study results and share insights from the Seahorse study in children with Down syndrome.

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.

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.

Katie Frank, PhD, OTR/L and Abby Rowley, LCSW discuss causes for behavior change in individuals with Down syndrome and how to determine whether the change is a sensory need or a behavior issue.

Crystal Lotterberry, co-founder of the Black Down Syndrome Association, answers questions to address the inequalities present for Black families in the Down syndrome community.

In this webinar, Dr. Christopher Hartnick discusses the safety and efficacy of the Hypoglossal Nerve (HGN) implant as it pertains to the Down syndrome community.

In this webinar, Dr. Elizabeth Pilcher will share oral health care considerations for patients with Down syndrome, orthodontic treatments as well as techniques to assist in a successful dental visit.

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.

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.

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.

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.

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.

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.