What your other children without Down syndrome are thinking:
Sibling Issues for Parents
Through a series of interactive exercises, parents will explore what questions, needs, and concerns are often raised by children who have a brother or sister with Down syndrome. Parents will come away with practical answers to commonly raised questions. This presentation draws upon Brian Skotko and Sue Levine’s publication in American Journal of Medical Genetics and their new book, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters. This workshop is also available on YouTube and online for free.
Taking Care of Your Family:
Celebrating the Highs and Surviving the Lows
Raising a son or daughter with Down syndrome is a journey full of celebrations–and challenges! Sue Levine, Brian Skotko, and Rick Goldstein recently published three landmark research papers in the American Journal of Medical Genetics. They surveyed more than 3,000 mothers, fathers, brothers, sisters, and people with Down syndrome nationwide, asking them about family life when someone has Down syndrome. How did families respond? And, what does this research mean for you and your family? What strategies can your family use to weather the stormy times and value the shining moments. During this workshop, you will also learn about ways in which family experiences play an important role in informing expectant parents who receive the new prenatal tests for Down syndrome.
Prenatal Tests for Down Syndrome:
National Updates and What This All Means for Your Family
In this presentation, Dr. Brian Skotko reviews the upcoming prenatal testing for Down syndrome, and the national efforts to ensure that all expectant couples receive accurate and up-to-date information. He also offers specific examples on how all parents can play an advocacy role on both small and large scales. The presentation includes highlights from his publications in Pediatrics and American Journal of Medical Genetics. (This presentation is targeted toward parents and other non-professionals.) A version of this talk is available to view for free on YouTube and from UMass Amherst.
Keeping Children and Adolescents with Down Syndrome Healthy:
All the Medical Updates that Parents Need to Know
In this presentation, Dr. Brian Skotko reviews all of the questions and concerns that parents most often have about their sons and daughters with Down syndrome. He provides the answers and action steps, stemming from the latest clinical research on people with Down syndrome. Based on his clinical experience in the Down Syndrome Program at Massachusetts General Hospital, Dr. Skotko makes sure that every parent can anticipate medical conditions so that the potentials of all people with Down syndrome are maximized.
Down Syndrome:
Not Just an Extra Chromosome
Accepting the William K. Bowes Jr. Award in Medical Genetics, Dr. Brian Skotko reviews the state of affairs for people with Down syndrome during this recorded lecture. He reviews the number of livebirths and elective terminations for Down syndrome over time. He further describes the breakthrough science that is offering to maximize the potential of all people with Down syndrome.
Down Syndrome Clinic to You (DSC2U)
A New Virtual Clinic for All Families
Over 95% of individuals with Down syndrome in the U.S. do not have access to a Down syndrome specialty clinic. Researchers at Massachusetts General Hospital and Harvard Medical School have now created “Down Syndrome Clinic to You” (DSC2U) as a way to bring the latest advances in health and wellness for people with Down syndrome directly to caregivers’ home computers. With DSC2U (dsc2u.org), caregivers complete an online intake form, where they identify current concerns about their son or daughter with Down syndrome. Their responses generate two personalized documents: a plan for caregivers and another one for the primary care providers of their sons/daughters. Funded by a national PCORI grant, Dr. Skotko will review the efficacy and satisfaction results of more than 200 English- and Spanish-speaking families who have already used DSC2U. This workshop will include a demonstration of DSC2U so that all families feel empowered to begin using in their own homes. A previous version of this talk was recorded at the 2019 NDSC Convention.
Celebrating Life with Down Syndrome
All people with Down syndrome have talents and treasures to share with their communities. In this presentation, Brian Skotko draws upon success stories in his co-authored national award-winning book, Common Threads: Celebrating Life with Down Syndrome, to enable parents, professionals, and friends to discover the potential of all persons with chromosomal differences. This presentation can be adapted for large keynotes or small audiences. The workshop version focuses on a selection of readings and engages the audience in a guided self-reflection.
Adult Brothers and Sisters of Siblings with Down Syndrome:
Exploring Past Experiences and Current Roles
Growing up with an individual with Down syndrome in the family provides one with the usual sibling issues, and a few more. There are often more opportunities for siblings without Down syndrome to share responsibility, protect and teach. There are also more challenging moments involving interaction with peers and the community. As adult siblings, you often continue to play an important role as friend, mentor, and caregiver. How does your vision for your siblings’ future match up with your parents’ view and the view of the person with Down syndrome? How can you better define your current role, and assist going into the future when parents are no longer around? This workshop will examine lessons learned from the past and discuss challenging moments in the present as you work toward a clear vision of the future for your sibling. This presentation draws upon Brian Skotko and Sue Levine’s publication in American Journal of Medical Genetics and their new book, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters.
The Latest and Greatest Research About Down Syndrome
The media headlines have been abuzz: “Down syndrome cured in a petri dish!” “Clinical Drug Trials for People with Down Syndrome Aim to Improve Their Cognition and Memory.” What exactly does this news mean? What promises are just around the corner, and which ones are still science fiction? In this workshop, Dr. Brian Skotko will review recent landmark research studies, involving people with Down syndrome. He will explain the science in a way that every parent/caregiver can understand, and participants will leave with an up-to-date appreciation of research’s limitations and potentials.
Brain Train:
SMART Actions That Might Boost Cognition and Prevent Alzheimer’s Disease in People with Down Syndrome
Two of the most common, yet challenging, questions that Dr. Skotko is asked by caregivers: (1) How can you prevent Alzheimer’s disease in people with Down syndrome? (2) How might we boost their cognition? While exciting research is unfolding in laboratories across the world, there are strategies that caregivers can take right now in respect to these two questions. In this presentation, Dr. Skotko reveals his recommendations, which must meet all of the following criteria: (a) supported, in part, by quality science, (b) have practical applications for home, (c) be adaptable to people with Down syndrome, and (d) pose no risk to people with Down syndrome. This is not a presentation on how best to educate people with Down syndrome. This is not a presentation about supplements or nutraceuticals. Instead, Dr. Skotko provides a set of actions that caregivers can take that might improve the long-term wellness for their loved one with Down syndrome. Attendees will come away with immediate steps that can be implemented in their homes.
What the Other Children Without Down Syndrome Are Thinking:
Sibling Issues for the Pediatrician.
In a one-hour presentation, physicians will explore what questions, needs, and concerns are often raised by their patients who have a brother or sister with Down syndrome. Physicians will come away with practical answers to commonly raised questions. This presentation draws upon Brian Skotko and Sue Levine’s publication in American Journal of Medical Genetics and their new book, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters. This course is also available online for free and for CME credits.
Prenatal Diagnoses of Down Syndrome:
Delivering Results in our New Age of Genetic Testing
In this presentation, Dr. Brian Skotko reviews the latest advances in prenatal testing for Down syndrome. He further reviews the evidence-based research on how physicians can effectively deliver a prenatal and postnatal diagnosis of Down syndrome. The presentation includes highlights from his publications in Pediatrics, American Journal of Obstetrics and Gynecology, and American Journal of Medical Genetics. (This presentation is targeted toward health care professionals.) A recorded version of this talk is also available for free online on YouTube, from UMass Amherst, and from University of Rochester Medical Center.
Keeping Children and Adolescents with Down Syndrome Healthy:
All the Medical Updates that Parents Need to Know
In this presentation, Dr. Brian Skotko reviews all of the questions and concerns that parents most often have about their sons and daughters with Down syndrome. He provides the answers and action steps, stemming from the latest clinical research on people with Down syndrome. Based on his clinical experience in the Down Syndrome Program at Massachusetts General Hospital, Dr. Skotko makes sure that every parent can anticipate medical conditions so that the potentials of all people with Down syndrome are maximized.
Down Syndrome:
Not Just an Extra Chromosome
Accepting the William K. Bowes Jr. Award in Medical Genetics, Dr. Brian Skotko reviews the state of affairs for people with Down syndrome during this recorded lecture. He reviews the number of livebirths and elective terminations for Down syndrome over time. He further describes the breakthrough science that is offering to maximize the potential of all people with Down syndrome.
Down Syndrome:
Health Care Updates for the Primary Care Pediatrician.
Down syndrome is the most common chromosomal condition in humans, but do you know the latest evidence-based medicine on how to best manage these patients? Much has changed since medical school! Many healthcare guidelines and emerging literature are changing the way that individuals with Down syndrome are diagnosed, followed, and managed. Astute physicians can now detect associated conditions before they become symptomatic in an effort to maximize health care development. The goal of this course if to review the latest advances in healthcare management of children with Down syndrome so that primary care pediatricians and other interested health care professionals can provide exceptional care. This course is available online, with CME credits, to healthcare professionals around the world.
Clinical Metabolism
In this free Webinar, Dr. Brian Skotko explains the basics of clinical metabolism. This one-hour lecture is ideal for genetics and metabolism fellows who are looking to gain a fundamental understanding of how to take care of patients with metabolic conditions. Topics covered include glycogen storage disorders, galactosemia, fatty acid oxidation disorders, amino acidopathies, organic acidurias, and urea cycle disorders.
Brother-and-Sister Workshops
Brian Skotko and his colleague Sue Levine have been leading all-day and multi-day workshops for brothers and sisters who have siblings with disabilities at local and national conferences. In these workshops, brothers and sisters have opportunities, through interactive exercises, games, and role-playing scenarios, to learn more about disabilities in an accepting and confidential environment with peers. Brothers and sisters come away from the workshops with more information, social connections with peers, and early lessons on advocacy. Workshops can be adapted for siblings of all ages. Looking to organize your own workshop for brothers and sisters? Brian Skotko and Sue Levine created this web page, packed with everything you need to know, including ready-to-use lesson plans. Brian and Sue talk more about the resources on Dr. Kishore Vellody’s podcast and the DSAIA podcast.
Adult Brothers and Sisters who Have Siblings with Down Syndrome
In this workshop, Dr. Brian Skotko and Sue Levine discuss the most commonly raised questions and concerns by adult brothers and sisters who have siblings with Down syndrome. Using national research about siblings, they tackle questions about medical decisions, living arrangements, guardianship options, financial questions, and lifestyle choices. They draw on questions and research in their book, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brother and Sisters. The intended audience for this workshop is adult brothers and sisters.
Healthy Students with Down Syndrome:
All the Medical Updates that Educators Need to Know.
How might behavior problems in the classroom be the result of an underlying medical issue? How do the conditions that go along with Down syndrome affect learning? In this presentation, Dr. Brian Skotko reviews all of the questions and concerns that educators most often have about their students with Down syndrome. He provides the answers and action steps, stemming from the latest clinical research on people with Down syndrome. Based on his clinical experience in the Down Syndrome Programat Massachusetts General Hospital, Dr. Skotko provides suggestions on how educators can collaborate most effectively with parents and clinicians to maximize students’ potential.