ASF Center of Excellence

Quick Overview

Jessica Duis discusses the Angelman Syndrome Foundation Center of Excellence, a multidisciplinary team providing comprehensive care for individuals with Angelman Syndrome. The team includes specialists in neurology, epilepsy, physical medicine, rehabilitation, physical therapy, occupational therapy, and speech and language therapy. The center aims to be a medical home and resource for patients and their families, offering ongoing support and care. The center also focuses on education, clinical trials, and research to better understand and treat Angelman Syndrome. Duis emphasises the importance of multidisciplinary coordination, urgent management, and therapy referrals. The center also offers telehealth services and consultations to local teams to ensure patients have access to the best care possible. The ultimate goal is to improve the day-to-day quality of life for individuals with Angelman Syndrome.

Introduction

Hello, my name is Jessica Duis, and I’m incredibly excited to be here to talk to you about a topic that I’m very passionate about, which is our Angelman Syndrome Foundation Center of Excellence and how we coordinate care in our clinic.

Our Team

We are fortunate to have an amazing team of individuals representing many different fields of medicine, including neurology, epilepsy, physical medicine, rehabilitation, physical therapy, occupational therapy, speech and language therapy. We have a fantastic nurse coordinator and also a focus on cognition and developmental pediatrics.

Our Approach

Our goal is to provide a medical home and comprehensive care for individuals with Angelman Syndrome. We aim to be a resource for you, available to help with day-to-day quality of life issues and provide ongoing care.

Center of Excellence

Our Center of Excellence is a multidisciplinary coordinated care hub. We don’t necessarily provide primary care, but we are here to help troubleshoot issues related to Angelman Syndrome. We also provide consults to local teams to empower caregivers and families.

Education and Clinical Trials

Education is a big piece of our work, including educating local teams and training new providers. We also participate in clinical trials, which is a huge part of the future of genetics.

Multidisciplinary Coordination

Multidisciplinary coordination is a key aspect of what we provide in a center of excellence. This includes comprehensive care, urgent management, coordinating care and equipment needs, therapy referrals, and acute care consults.

Our Nurse Coordinator

The key to our center of excellence is our phenomenal nurse coordinator, Christina Gross. She fields all the calls, can add on visits, and works with our team to provide feedback and support to families.

Telehealth

We have expanded access to telehealth, allowing us to manage things by phone and support families remotely.

Regular Visits

We see all ages, from birth through the end of life. We recommend that families see all of our specialists in the multidisciplinary clinic for the best care.

The Importance of the Multidisciplinary Team

Every time we meet someone with Angelman, we learn something new that we carry with us when we see the next person. The families share so much with us about what works for their child or adult, and this makes a big difference for every person we see after that individual.

Centers of Excellence

Centers of Excellence recognize community needs and establish standards of care. We aim to create access to experienced providers and care close to home. We are passionate about health equity for all individuals with Angelman.

Real-Time Consultations

We offer real-time consultations supported by the Angelman Syndrome Foundation. We provide recommendations back to local providers in medical speech and language therapy, IEP advocacy, nutrition, and occupational therapy.

Telehealth Services

We have increased our telehealth services to allow for access to a provider who can provide treatment recommendations and potentially provide prescriptions for certain medications.

Conclusion

Our Centers of Excellence provide a range of services and support. We are always here to help, so please don’t hesitate to reach out to us. Thank you so much for listening.