We humans, typically, have 23 pairs of chromosomes. Sometimes, for a variety of reasons, we have an extra chromosome or we are missing one. Down syndrome, also known as Trisomy 21, is a genetic disorder that occurs when an individual has a full or partial extra copy of their 21st chromosome. Down syndrome is the most frequent of the chromosomal disorders in humans, occurring in approximately 1 in 700 births in the US. With improved care of often life-threatening clinical challenges, individuals with Down syndrome are living much longer.

In this month’s podcast of Your Child’s Brain we are going to talk about Down Syndrome and especially focus on how the increased lifespan of those with Down syndrome is impacting treatment and research for people living with this diagnosis.

Resources

· Down Syndrome Association of Maryland (dsamd.org)

· National Down Syndrome Society (ndss.org)

· National Down Syndrome Congress (ndsccenter.org)

· Global Down Syndrome Foundation (https://www.globaldownsyndrome.org)

· LuMind IDSC Foundation (https://lumindidsc.org)

· NIH – research plan across the LifeSpan - Project INCLUDE for co-occurring medical conditions (www.nih.gov/include-project)

· Eunice Kennedy Shriver National Institute of Child Health and Human Development (nih.gov)

· National Task Group on Intellectual Disabilities and Dementia Practices - Intellectual Disabilities and Dementia Resources | The NTG (the-ntg.org)

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How does experience and one’s  environment influence the early development of our brains? We’ve known for a long time that  this question does not simply boil down to “Nature” vs “”nurture”, a false dichotomy. Instead, brain development might best be thought of as a cascading interaction between nature and nurture that unfolds over time. Twenty five years ago, the National Academy of Sciences published a landmark report called From Neurons to Neighborhoods which dove deep into this question. 

In this month’s episode of Your Child’s Brain, join Dr. Brad Schlaggar and his guests.as they reflect on this influential report and discuss how early experiences, environments and exposures influence the developing brain early experiences, environments and exposures influence the developing brain.

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In this episode of Your Child’s Brain, Dr. Brad Schlaggar is joined by his Kennedy Krieger colleague, Dr. Doris Leung, to discuss a set of diseases of muscle that we refer to collectively as muscular dystrophy (MD). Muscular dystrophy is actually a group of rare genetic diseases that cause progressive weakness and degeneration of muscles. Overall, the muscular dystrophies vary in age of onset, severity, and the pattern of the affected muscles. A general principle shared by all forms of MD is that they grow worse over time as muscles progressively degenerate, atrophy, and weaken.

For more information about muscular dystrophy, these resources might be helpful:

· Kennedy Krieger Center for Genetic Muscle Disorders https://www.kennedykrieger.org/patient-care/centers-and-programs/center-for-genetic-muscle-disorders

· Parent Project Muscular Dystrophy https://www.parentprojectmd.org/

·Myotonic Dystrophy Foundation https://www.myotonic.org/

· FSHD Society https://www.fshdsociety.org/

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Join Dr. Brad Schlaggar, president and CEO of Kennedy Krieger Institute and Dr. Lisa Carey, the Assistant Director of the Center for Innovation and Leadership in Special Education as well as an education specialist for the Neuropsychology Department at Kennedy Krieger. Accommodations for college require self-advocacy. It is the student themselves who must request those accommodations at the school—not the parents. Services such as occupational therapy, speech therapy, reading support, and instructional assistants, which may have been a part of a student’s IEP, are not a part of college accommodations.

Additionally, since many students live on a college campus, there may be additional accommodations to consider for housing, dining, and recreation. Listen as they dive into the process of requesting accommodations and the importance of working with the college’s Disability Support office. Families need to start preparing their child early for this change so that students have the self-advocacy skills to be successful in college.

Resources for students and families:

Understood.org has great resources for understanding disability services in higher education

Kennedy Krieger has a guide specifically for college students with a history of cancer.

The US Department of Education Office for Civil Rights offers a guide of student rights and responsibilities in postsecondary education.

Edutopia has a helpful blog post on this topic.

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In the United States alone, there are nearly 20 million children with developmental, cognitive, behavioral, and/or learning disorders. It is widely recognized that the needs of children with these issues are growing in number and complexity while, at the same time, a critical shortage of access to physician specialists is resulting in delayed diagnoses, longer wait times for treatment and, consequently, poorer outcomes.  On this month’s episode, Kennedy Krieger president and CEO, Dr. Brad Schlaggar is joined by colleagues Dr. Miya Asato, a pediatric neurologist and Dr. Mary Leppert, a developmental pediatrician to discuss the critical shortage and what is being done to address it and more importantly, what parents can do.

Resources:

Center for Disease Control – Concerned about Your Child’s Development https://www.cdc.gov/ncbddd/actearly/concerned.html

Learn the Signs – Act Early https://www.cdc.gov/ncbddd/actearly/index.html

Milestone Tracker App https://www.cdc.gov/ncbddd/actearly/milestones-app.html

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On this month’s episode, we are going to discuss Functional Neurological Disorders or FND.  Patients with this disorder are often stigmatized and, unfortunately, criticized for seemingly faking a disorder.  The reality is that the symptoms of functional neurological disorders are real, can cause significant morbidity, but, thankfully, can most often be remedied by prompt identification, education, and appropriate treatment. Kennedy Krieger president and CEO, Dr. Brad Schlaggar is joined by Dr. Souraya Torbey, a child and adolescent psychiatrist in the Center for Developmental Behavioral Health and the director of the FND Clinic at Kennedy Krieger and Dr. Caitlin Thompson is a staff clinical psychologist in the FND Clinic.  They are also joined by a parent of a child diagnosed with FND. Together the group will delve into FND and its impact not only on the individual but the entire family system.

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May is Children’s Mental Health Awareness month and as part of that recognition, join Dr. Brad Schlaggar, president and CEO of Kennedy Krieger and his guest Dr. Matt Edelstein, director of the Brief Treatment Clinic at the Institute, as they discuss challenging behaviors in children and how those behaviors can have a cascading impact at multiple levels of a family system.

For the child, such behaviors can impede social, emotional, and academic functioning. For caregivers, they can influence stress, mood, feelings of confidence, and even undermine a sense of parental competence. Aggressive behaviors can cause injury.

Finally, for the family as a whole, challenging behaviors can tax relationships and have negative repercussions both within and beyond the walls of the household.

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April is known internationally as Autism Acceptance Month. As part of that recognition, join Dr. Brad Schlaggar, president and CEO of Kennedy Krieger and his guests Drs. Amy Keefer and Roma Vasa from the Center for Autism, Services, Science and Innovation, to discuss the anxiety disorders common in individuals with autism and discuss why this population may be particularly vulnerable to the comorbid symptoms of anxiety, as well as treatment options and research being done in this field.

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On this month’s episode Kennedy Krieger President and CEO, Dr. Brad Schlaggar is joined by Dr. Janet Lam, a pediatric neurologist and an expert in sleep medicine and the director of the Sleep Disorders Clinic and Laboratory at Kennedy Krieger. The two will delve into sleep disorders in children, especially for those with neurodevelopmental conditions. 

Resources

Kennedy Krieger Sleep Disorders Clinic and Lab

About Sleep Disorders

National Sleep Foundation

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There are over 7000 identified rare diseases that impact over 300 million people worldwide. And a disproportionate number of those rare diseases affect the developing brain and nervous system. Having any given rare disease is indeed rare. But having a rare disease is, in fact common. February, is rare disease awareness month and the last day of February is recognized internationally as Rare Disease Day.  For this month’s episode, Dr. Brad Schlaggar, pediatric neurologist, and president and CEO of Kennedy Krieger Institute is joined by Dr. Anne Comi, a pediatric neurologist, to discuss a specific rare disease and some potentially very promising progress in its treatment. Additionally, we will hear from Megan Lewis, mother of Tucker, who shares some insights of their journey with a rare disease. 

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We’ve known for some time now that the first years of a child’s life constitute a very important period for the development of that child’s brain. Because the brain is responsible for cognition, language, movement, emotion, self-regulation, and essentially every aspect of human behavior, it stands to reason that optimizing those first few years can have a significant impact on the rest of that child’s life.

In this episode, Kennedy Krieger CEO and President Brad Schlaggar will be joined by colleagues Marcella Franczkowski, Assistant VP, and Executive Director of PACT, Sharon Holloway-Gentemann, the Director of PACT World of Care, Dr. Jackie Stone, Chief Clinical Officer as well as Sarah Monaghan, a parent of a graduate of PACT. The discussion focuses on how early childhood programs help optimize developmental outcomes, and will also look at some of the challenges faced by these programs and why such programs are so worthy of enhanced societal investment.

Resources to visit:

Division for Early Childhood of the Council for Exceptional Children www.dec-sped.org

National Association for the Education of Young Children

Developmental Milestones Checklist and Family Guidance from Early Head Start

NAEYC – Questions to Ask Your Child Care – checklist

National Association for the Education of Young Children - Readiness: Not a State of Knowledge, but a State of Mind

Children's Defense Fund-State of America's Children 2023--Early Education

Centers for Disease Control and Prevention (CDC) Public and Private Preschool Enrollment From 2019-2021 at Its Lowest Since 2005*

Centers for Disease Control and Prevention (CDC): Fast Facts: Preventing Adverse Childhood Experiences*

Kaiser Family Foundation: Disparities in Health and Health Care: 5 Key Questions and Answers*

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