Family Conference Agenda-links

AGENDA

Please note sessions are subject to change

Tuesday, August 2, 2022

10:00AM - 5:00PM CST

ASF Family Conference Registration Desk Open

Prefunction 7AB

11:30AM - 12:30PM CST

Lunch

Prefunction 7AB & Kilimanjaro Suite 6

Welcome Session and Keynote Research Update

Come hear about the latest research updated, updates about the work at the ASF and more.

Presented by: Dr. Becky Burdine

Kilimanjaro Suite 6

11:45AM - 12:45PM CST

12:30PM - 4:00PM CST

SIB SHOP

Sibshops are lively, pedal-to-the-metal celebrations of the many contributions made by brothers and sisters of kids with special needs.

Sibshop is an exciting program just for brothers and sisters of kids with special needs. At a Sibshop, brothers and sisters will

Meet other brothers and sisters of children with Angelman syndrome
Have fun!
Talk with others who “get it” about the good (and sometimes not so good!) parts of having a sib with special needs
Learn more about Angelman syndrome and the services that people receive.
Have some more fun!

SIBSHOPS is a nationally acclaimed program that provides peer support with a

recreational environment. It’s designed to celebrate the many contributions

made by brothers and sisters of kids with special needs! Each workshop

encourages kids to participate in activities that encourage sharing laughter

and fun!! Kids will have a chance to meet other kids whose brother or

sister have Angelman syndrome and talk about the good and not-so-good parts of

having a sibling with Angelman syndrome.

Facilitated by: Robin Wilkerson and Lesley McCallister

Banyan, Crown Palm, Acacia & Bamboo

Update on Translational Research

Come hear updates on transitional research

Presented by: Allyson Berent

Kilimanjaro Suite 6

12:45PM - 1:15PM CST

1:15PM - 2:30PM CST

Industry Updates - Click Here to Join

Representatives from pharmaceutical and biotech companies working on Angelman therapeutics will present updates on their work.

Updates on the Roche development program of rugonersen (UBE3A-LNA) for Angelman Syndrome.
- Presented by: Ina Bruenig Traebert, PhD, Roche Pharma Research and Early Development (pRED)
Provide updates on the current status and clinical results of the Phase 1/2 study of GTX-102 in individuals with Angelman syndrome.
- Presented by: Camille Bedrosian, Ultragenyx
Gene therapy in Angelman syndrome: An update on PTC-AS
- PTC Therapeutics will provide an update on their gene therapy program (PTC-AS). This will include an overview of the most up-to-date nonclinical data, recent progress, and next steps.
- Presented by: Edwin John Weeber, PhD, and Ifode Ajari, PTC Therapeutics
Updates on the Ionis clinical trial of HALOS for Angelman syndrome
- Presented by: Rebecca Crean, PhD, Neurology Clinical Development, Ionis Pharmaceuticals
Updates from Neuren Pharmaceuticals
- Presented by: Nancy Jones, PhD, VP, Clinical Development, Neuren Pharmaceuticals and Larry Glass, CSO, Neuren Pharmaceuticals

Kilimanjaro Suite 6

2:30PM - 2:45PM CST

BREAK

2:45PM - 3:45PM CST

BREAKOUT SESSIONS

Just for Moms

Facilitated by:

Mindy McBride and Becky Burdine

Kilimanjaro Suite 8

Just for Dads

Facilitated by: Adam Moore

Kilimanjaro Suite 7

3:45PM - 4:00PM CST

BREAKOUT SESSIONS

Just for Moms Overflow

Kilimanjaro Suite 8

Just for Dads Overflow

Kilimanjaro Suite 7

4:00PM - 5:00PM CST

BREAKOUT SESSIONS

Just for Grandparents

Facilitated by: Vicki Nelson

Kilimanjaro Suite 8

Newly Diagnosed 101

Being newly diagnosed can be so very overwhelming. This session will discuss the first 100 days and how to proactively take hold of your child’s healthcare and development.

Facilitated by: Kathryn Ely and Liz Jalazo

Kilimanjaro Suite 7

6:00PM - 8:00PM CST

Pool Party Welcome

Come celebrate the opening of the conference at our own private pool party. Food and beverages will be provided.

Wednesday, August 3, 2022

7:00AM - 4:30PM CST

ASF Family Conference Registration Desk Open

Prefunction 7AB

7:15AM - 8:45AM CST

BREAKFAST ON YOUR OWN

8:00AM - 9:00AM CST

Yoga with Hilda

Banyan & Crown Palm

8:00AM - 9:00AM CST

Beyond Traditional Physical Therapy

This session will focus on Cuevas Medek Exercises (CME Therapy), a type of pediatric physical therapy created by Ramon Cuevas in the 1970s for working with children experiencing neuro-motor impairments. This technique was designed to provoke the brain’s underlying recovery potential by exposing the child to gravity using specific dynamic exercises that result in novel experiences and new skills.

Presented by: Kara Swinney, MS, PT, C/NDT

Kilimanjaro Suite 6

9:00AM - 10:30AM CST

Behavior and Anxiety in Angelman Syndrome

This esteemed panel will review common behavioral concerns in kids, teens, and adults with AS that have been presented by parents and identified in research. They will discuss recent efforts to develop standardized treatments for these behavioral concerns that are effective and minimize risk. Topics from birth to adult hood will be covered.

Panelists: Dr. Chris Keary, Dr. Anne Wheeler, Dr. Cesar Ochoa and Dr. Anjali Sadhwani
Kilimanjaro Suite 6

10:30AM - 11:00AM CST

BREAK

Prefunction 7AB

11:00AM - 12:30PM CST

AS Clinical Experts Panel - All you want and need to know about clinical care.

This session will include clinical care for ALL ages of those living with AS.

Presented by:

Dr. Ron Thibert
Dr. Mark Nespeca
Dr. Elizabeth Berry Kravis
Dr. Jessica Duis

Kilimanjaro Suite 6

12:30PM - 1:45PM CST

LUNCH ON YOUR OWN

12:30PM CST

Friends with Wings: Bingo and Pizza Party

Event Barn

1:45PM - 2:45PM CST

BREAKOUT SESSIONS

Evolving Clinical Trials in Angelman: Lessons Learned from and for our AS Community

Come here from industry experts about the role of the parent in clinical trials, what goes into a clinical trial and get all your questions answered.

Presented by:

Liz Mascherino with Biogen
Julie Burns with Genetech
Anne Bruns with PTC
Kristina Bowyer, Ionis

Kilimanjaro Suite 6

All Things Diet in AS

Confused about what nutritional plans to follow for your kids? This session will discuss the options available, what’s good about them, what may not be good about them, and what can work for you.

Presented by: Heidi Pfeifer, RD

Kilimanjaro Suite 7&8

2:45PM - 4:00PM CST

BREAKOUT SESSIONS

All Things IEP

This session aims to review all things related to goals and objectives in the IEP. Attendees will become familiar with how goals and objectives are developed through assessments and data in the present levels section, how they are written, and how service time could be structured to accomplish those goals and objectives. In addition, attendees will walk away with a practical guide and reflection tool for evaluating their child's IEP document in the future.

This session will cover ALL AGES

Presented by: Michelle Harvey

Kilimanjaro Suite 6

All Things Insurance/Government

We will review the changes related to insurance, laws, community alternatives and considerations related to the ever-changing public health needs.

This session will cover ALL AGES

Presented by: Eric Wright

Kilimanjaro Suite 7&8

4:00PM - 4:15PM CST

BREAK

Prefunction 7AB

4:15PM - 5:45PM CST

All Things Seizures in AS

This session will touch on everything and anything around seizures affecting our individuals with AS. If you have a question about seizures you need to be answered, this is the session for you.

This session will cover ALL AGES

Presented by: Ron Thibert

Kilimanjaro Suite 7&8

6:30PM - 9:00PM CST

Welcome Reception

Come join us to celebrate community! We will have dinner, drinks, conference video, photo booth and some special surprise! This will be a very friendly event to all ages.

Kilimanjaro Suite 6

Thursday, August 4, 2022

7:15AM - 8:45AM CST

BREAKFAST ON YOUR OWN

8:30AM - 5:00PM CST

ASF Family Conference Registration Desk Open

Prefunction 7AB

9:00AM - 10:00AM CST

BREAKOUT SESSIONS

Yoga for AS

Kilimanjaro Suite 6

AS Genetics 101

We will discuss the genetics underlying different types of Angelman syndrome and how loss of UBE3A function affects individuals. We will then look at the science that suggests therapeutics are possible and discuss what you need to know about how clinical trials work. Q and A after the session.

Presented by: Dr. Becky Burdine

Kilimanjaro Suite 7&8

10:00AM - 12:15PM CST

BREAKOUT SESSIONS

10:00AM - 11:00AM CST

Lessons learned from the Angelman Syndrome Natural History Study

Presented by: Dr. Wen-Hann Tan

Kilimanjaro Suite 6

Mary Anne Ehlert's: Protected Tomorrows – Birth to 14 years old

Kilimanjaro Suite 7&8

10:00AM - 12:15PM CST

11:00AM - 11:15AM CST

BREAK

Prefunction 7AB

12:00PM - 1:30PM CST

LUNCH ON YOUR OWN

1:30PM to 2:45PM CST

BREAKOUT SESSIONS

Transition - Preparing for Success Through Planning, Teamwork, and Natural Opportunities for Learning

This presentation will focus on the transition to high school, the high school journey and creating pathways for post-secondary planning. Within the framework of multi-tiered systems of support we will focus on developing individualized pathways for students in both the academic and social/emotional realms. We will provide examples of transition programming specific to special education and one student’s experience.

Presented by: Michele Speckman, Dr. Margie Borawska and
Amy Girouard

Kilimanjaro Suite 6

AAC Implementation, Part 1: Foundational Understandings
Communication is at the core of the human experience. This session will explore foundational understandings to guide communication partners through discussion of the nature and nuances of communication, language, and connection with AAC!

Presented by: Tabi Jones

Kilimanjaro Suite 7&8

2:00PM - 4:00PM CST

Friends with Wings Party

Event Barn

2:45PM - 3:00PM CST

BREAK

Prefunction 7AB

3:00PM to 4:15PM CST

AAC Implementation, Part 2: Use-it-Tomorrow Strategies
Using AAC across environments and activities is rarely initially intuitive and can pose challenges of many stripes, even when the basics of AAC implementation are well understood. This session will dive into actionable strategies to 1) Plan for AAC, 2) Speak AAC, and 3) Invite participation with AAC, in the context of everyday routines, fun family moments, and novel experiences.

Presented by: Tabi Jones

Kilimanjaro Suite 7&8

4:15PM - 4:30PM CST

BREAK

Prefunction 7AB

4:30PM to 5:45PM CST

AAC Implementation, Part 3: Communication Partner Skills
Communication partners of AAC learners play an essential role in shaping quality interactions. From social closeness to language development, to supporting emotional competence, the actions and reactions of communication partners highlight the transactional nature of communication. This session will explore strategies for honing communication partners' skills across interactions.

Presented by: Tabi Jones

Kilimanjaro Suite 7&8