

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
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Meet other brothers and sisters of children with Angelman syndrome
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Have fun!
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Talk with others who “get it” about the good (and sometimes not so good!) parts of having a sib with special needs
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Learn more about Angelman syndrome and the services that people receive.
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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.
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Updates on the Roche development program of rugonersen (UBE3A-LNA) for Angelman Syndrome.
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Presented by: Ina Bruenig Traebert, PhD, Roche Pharma Research and Early Development (pRED)
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Provide updates on the current status and clinical results of the Phase 1/2 study of GTX-102 in individuals with Angelman syndrome.
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Presented by: Camille Bedrosian, Ultragenyx
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Gene therapy in Angelman syndrome: An update on PTC-AS
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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.
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Presented by: Edwin John Weeber, PhD, and Ifode Ajari, PTC Therapeutics
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Updates on the Ionis clinical trial of HALOS for Angelman syndrome
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Presented by: Rebecca Crean, PhD, Neurology Clinical Development, Ionis Pharmaceuticals
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Updates from Neuren Pharmaceuticals
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Presented by: Nancy Jones, PhD, VP, Clinical Development, Neuren Pharmaceuticals and Larry Glass, CSO, Neuren Pharmaceuticals
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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:
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Liz Mascherino with Biogen
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Julie Burns with Genetech
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Anne Bruns with PTC
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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
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
Friday, August 5, 2022
7:00AM - 8:00AM CST
BREAKFAST ON YOUR OWN
8:30AM - 12:00PM CST
Mary Anne Ehlert's: Protected Tomorrows
Ages 14 and up
Kilimanjaro Suite 7&8
9:30AM-10:30AM CST
A Parent's Journey with Mental Health
Presented by: Debi Peterson, Athena Jimenez and Magalay Santana-Spidell
Kilimanjaro Suite 1