2023-2024 NC Down Syndrome Virtual Speakers Series

10/18 ABLE Accounts and Special Needs Trusts

7:30 pm

ABLE Accounts and Special Needs Trusts

Ryan F. Platt, A Special Needs Plan

The ABLE account is a state-run savings program for eligible people with disabilities in the United States. It continues to be an area many families have questions about; in terms of its setup, how to effectively use it, and how it compliments a special needs trust. You are invited to an interactive, exciting experience to learn about ABLE accounts and Special Needs trusts with A Special Needs Plan founder Ryan Platt. Learn how ABLE accounts can be an asset to your loved one with Down syndrome and other disabilities. 

Ryan Platt founded A Special Needs Plan in 2005 and has been a pioneer in his field. He completed his Special Care Planner Certification at the American College in Bryn Mawr, PA. He continued his financial planning education by completing his Chartered Financial Consultant®, Chartered Special Needs Consultant™ and Certified Family Business Specialist designations. He's grown A Special Needs Plan into an elite, nationally recognized planning firm. Ryan's background includes advanced training in estate and tax planning, special needs trusts, government programs, and the emotional dynamics of working with people and families with loved ones with special needs.

Registration opens on September 1st.

Registration closes on October 16th.

11/15 Technology and Apps for Everyday Living

7:30 pm

Technology and Apps for Everyday Living

Emily Danciu-Grosso, Marketing and Sales Coordinator, SimplyHome

Are you leveraging the benefits of apps and technology that can promote self-determination and autonomy with daily living skills? Learn about the types of enabling technology on the market (i.e., medication dispenser, Amazon Alexa products, sensor-based technology, self-regulating and wayfinding apps and much more) that empower independence and grant caregiver peace of mind. Discover resources to stay up to date about enabling technology and discuss best practices around the use of technology as a natural support.

Emily Danciu-Grosso is the Marketing and Sales Coordinator for SimplyHome. Emily’s passion is driven by her relationship to an adult sister with an intellectual disability. Emily’s professional background is in program development and implementation, along with years in the role of direct support. She has been in this field for over twelve years and has experience in the areas of wellness, employment, and transitioning into adulthood. She is excited in her role at SimplyHome to share tools and invaluable resources with families and providers that show what is possible in terms of independence with daily living through the use of technology.

Registration opens on October 1st.

Registration closes on November 13th.

12/13 Unraveling Down Syndrome and Autism

7:30 pm

**Please note that this event will be held on the second Wednesday of December: 12/13**

Unraveling Down Syndrome and Autism

Lina Patel, PsyD

An estimated 20% of individuals with Down syndrome can have a co-occurring diagnosis of autism. This presentation will discuss the characteristics of autism in Down syndrome, methods for diagnosing, best practices for a new diagnosis, and priority interventions that are useful across the spectrum. Dr. Patel will also cover tips for navigating a dual diagnosis as well as what might be overlooked with a dual diagnosis.

Lina Patel, PsyD is an Associate Professor of Child and Adolescent Psychiatry at the University of Colorado School of Medicine, practicing at Children's Hospital Colorado. Dr. Patel is the Director of the Down Syndrome Behavioral Health Collaborative, a virtual clinic providing tele-behavioral health services to children, teens, and young adults with Down syndrome. She provides consultation with schools, parent training regarding the management of challenging or unsafe behaviors, toilet training, and desensitization to medical devices (such as hearing aids and CPAP), and evaluation for dual diagnoses, including autism. She has worked with hundreds of individuals with Down syndrome. Outside of her clinical work, she conducts research as the Director of Neurodevelopmental, Behavioral and Cognitive Assessment at the Linda Crnic Institute for Down Syndrome. Additionally, she has presented to numerous organizations across the country and internationally and is the coauthor "Potty Time for Kids with Down Syndrome: Lose the Diapers, Not Your Patience."

Registration opens on November 1st.

Registration closes on December 11th.

1/17 Skin Conditions and Down syndrome

7:30 pm

Skin Conditions and Down syndrome

Jillian Rork, MD

In this session, you will learn about skin conditions seen in people with Down syndrome. The skin is our biggest organ and certainly the most visible, so there will be a lot to discuss! We will start with more common conditions such as dry skin and lips, folliculitis, hidradenitis suppurativa, alopecia areata, and infections such as athlete's foot. We will also discuss less common but important skin conditions to know about including syringomas and elastosis perforans serpiginosa. We will focus on practical tips on how to take care of these conditions. When appropriate, we will discuss how the immune system interacts with the skin and could explain why certain skin conditions are more common in people with Down syndrome.

Dr. Jillian Rork is a pediatric dermatologist at Dartmouth Health in Manchester, New Hampshire. She is also a clinical assistant professor of Dermatology and Pediatrics at Dartmouth Medical School. She grew up in New Hampshire, attended Dartmouth College where she majored in French, and then Harvard Medical School. She is passionate about all things skin and Down syndrome. She specializes in treating individuals with Down syndrome and promoting education and research in this area. She is the co-chair of the Pediatric Dermatology Research Alliance Down Syndrome Subgroup and collaborates regularly with colleagues within the Down Syndrome Medical Interest Group. Dr. Rork loves reading, playing the saxophone, fly fishing, trying new foods, and hanging out with her husband, two kids, and lop-eared bunny.

Registration opens on December 1st.

Registration closes on January 15th.

2/21 Promoting Mental Health Throughout the Lifespan for Individuals with Down Syndrome

7:30 pm

Promoting Mental Health Throughout the Lifespan for Individuals with Down Syndrome

Abby Rowley, LCSW

Mental health is a critical component of overall well being. In this session, commonly seen mental health concerns at various phases of life will be presented. Topics will include life transitions, grief/loss, relationships, and more. Families and caregivers will learn practical strategies to help promote mental health throughout the lifespan of individuals with Down syndrome in order to work to prevent more serious mental health/behavioral issues. 

Abby Rowley is a Licensed Clinical Social Worker who currently works at the Adult Down Syndrome Center in Park Ridge, Illinois. She 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.

Registration closes on February 19th.