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!
Upcoming Webinars
Webinar: Is it Sensory or Behavior?
Join Katie Frank, PhD, OTR/L and Abby Rowley, LCSW as they discuss causes for behavior change and how to determine whether the change is a sensory need or a behavior issue. Additionally, practical strategies will be shared to address both sensory and behavioral needs of individuals with Down syndrome.
Katie has worked as an occupational therapist at the Adult Down Syndrome Center since 2016 and in the field of occupational therapy since 2001. She also serves as the president of the Down Syndrome Medical Interest Group-USA. Abby is a licensed clinical social worker who previously worked as a case manager in a residential community for children and adults with intellectual and developmental disabilities, as well as in the school system as a social worker. She currently works at the Adult Down Syndrome Center in Park Ridge, Illinois, as the clinical therapist.
Pre-registration is required to attend. Must be a myDSC member to participate. Not a member? Join today — it’s free!
Past DS-CTN Research Series Webinars
Webinar: GnRH Replacement Therapy in Adults With Down Syndrome: Study Findings & New Perspectives
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.
Webinar: Sharing Results from the 2014 Clematis/Basmisanil Clinical Trial
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.
Webinar: 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.
Webinar: 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.
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!
Webinar: Addressing Inequalities for Black Families in the Down Syndrome Community
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.
Webinar: New Developments in Hypoglossal Nerve Stimulation to Alleviate Obstructive Sleep Apnea
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.
Webinar: Oral Health Care for Patients with Down Syndrome
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.
Webinar: Healthy Boundaries and Relationships
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.
Webinar: 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.
Webinar: 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.
Webinar: 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.
Webinar: 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.
Webinar: 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.