Workshops

Parents


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.


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.


New 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.


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.


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 Geneticsand their new book, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and SistersThis workshop is also available online for free.


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.


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.

Siblings


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 SistersThe intended audience for this workshop is adult brothers and sisters.


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.

Physicians


Keeping Children and Adolescents with Down Syndrome Healthy: Medical Updates for Physicians

In this presentation, Dr. Brian Skotko reviews the new healthcare guidelines for people with Down syndrome from the American Academy of Pediatrics.  He tackles the questions and concerns that patients’ parents most often have about their sons and daughters with Down syndrome, providing the answers and action steps that stem 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 physician can anticipate medical conditions so that the potentials of all people with Down syndrome are maximized.  Versions of this presentation are available on YouTube and here.


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.


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.


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 SistersThis course is also available online for free and for CME credits.


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.


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.

Educators


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.