ASF Family Conference
July 23 - 26, 2024
Join us at the ASF Family Conference
A place where education, community, collaboration, and support come together to create an educational and empowering experience for all!
*Registration Required
Agenda
Print Agenda
*agenda is subject to change.
Subscribe to ASF on YouTube
for a collection of recorded sessions post-event.
Time
Title
Location
Presenter
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EVENT CHECK IN OPEN
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Registration Booth A
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EXHIBIT HALL OPEN
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Products, services, and supports you love are on exhibit! Conference totes are available at the Tobii Dynavox table! Inside your tote bag, you will find your Safari Tour passport. Collect all the stamps and be entered to select one of our incredible prizes.
First Stop for Your Conference Tote: Tobii Dynavox
West Pathway, South Pathway
South Pathway
First Stop for Your Conference Tote: Tobii Dynavox
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Welcome Session
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We are so glad you're here! Join us to kick off the 2024 ASF Family Conference with C.E.O, Amanda Moore.
Amanda Moore
Kilimanjaro 2
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SibShops
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Sibshops provide siblings of kids with disabilities peer support and information in a lively, recreational setting. The Sibshop will be pedal-to-the-metal events where they will meet other sibs, have fun, laugh, talk about the good and not-so-good parts of having a sib with AS, play some great games, learn something about the services their brothers and sister receive, and have some more fun. Open to ages 5-18.
Robin R. Wilkerson, PhD
Indigo Bay
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Exhibitor Safari Tour
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Products, services, and supports you love are on exhibit! Start your tour by collecting your conference tote at the Tobii Dynavox table. Inside your tote bag, you will find your Safari Tour passport! Collect all the stamps and be entered to select one of our incredible prizes.
First Stop for Your Conference Tote: Tobii Dynavox
West Pathway, South Pathway
South Pathway
First Stop for Your Conference Tote: Tobii Dynavox
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Music Therapy for Individuals with AS
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Therabeat, Inc. presents music therapy for individuals with Angelman syndrome. We invite you to enjoy quality time creating music together. If you have never experienced music therapy with your loved one, you can expect to learn how music affects the brain as well as other benefits from music therapy across developmental domains.
Chelsea Kinsler, LPMT, MT-BC
Jennifer Puckett, LPMT, MT-BC
Therabeat, Inc.
Aloeswood
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Just for Dads Social
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Dads are Rad! Community is a necessary part of navigating any part of life, and that is certainly no exception for life with Angelman syndrome. We invite the important guys in our lives to join us for an hour of socializing and finding community.
A.J. Knouff
Adam Moore
Jim Kubicza
Zambezi
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Just for Grandparents Social
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Get together with grandparents! As grandparents, you are on a unique journey supporting your children as they navigate parenthood and the additional complexities (and joys) of Angelman syndrome. Join us to connect and find community with fellow grandparents.
Ann Nazione
Vicki Nelson
Nile
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REMOTE ROOM CHECK IN
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Skip the hustle and bustle in the main lobby and check in at the Kalahari's private desk set up exclusively for ASF Conference attendees. The Sands Lobby is conveniently located near the majority of guest rooms. From level 1 of the Sands Wings, you can walk straight to the convention center for the conference and the waterpark for fun!
Add a More Time for More Fun package to your stay and receive a guaranteed 1:00 PM early check-in at a special VIP check-in area and a 2:00 PM late checkout! Ask Kalahari desk staff for more information.
Sands Lobby
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Music Therapy for Individuals with AS
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Therabeat, Inc. presents music therapy for individuals with Angelman syndrome. We invite you to enjoy quality time creating music together. If you have never experienced music therapy with your loved one, you can expect to learn how music affects the brain as well as other benefits from music therapy across developmental domains.
Chelsea Kinsler, LPMT, MT-BC
Jennifer Puckett, LPMT, MT-BC
Therabeat, Inc.
Aloeswood
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Just for Moms Social
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Resilient as a Mother! No one understands the journey of mothering an individual with AS except for another mom walking the same path. Join mothers from around the world in this social setting to find camaraderie and comfort that you are not alone.
Mindy McBride
Rebecca Burdine, PhD
Zambezi
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Newly Diagnosed Networking
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Welcome to the family! Families of newly diagnosed individuals with AS are invited to better acquaint themselves with the world of Angelman syndrome, ask questions in a small and safe environment, and meet fellow families who recently entered the journey.
Elizabeth Jalazo, MD
Kathryn Ely
Nile
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ASF Family Pool Party
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Back with a BIG splash! All families are invited to swim, snack, and socialize at the signature ASF Family Pool Party. A cannot miss kickoff event!
Outdoor Pool
Time
Title
Location
Presenter
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EVENT CHECK IN OPEN
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Registration Booth A
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Music and Meditation: For Caregivers
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Inviting caregivers to start your day in a positive headspace with Therabeat, Inc. Learn first-hand how music affects the brain. Practices learned in this session can reduce stress and anxiety and carry over when you return home. No musical talent is necessary.
Chelsea Kinsler, LPMT, MT-BC
Jennifer Puckett, LPMT, MT-BC
Therabeat, Inc.
Indigo Bay
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Grandparent Coffee
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Joyce McGahhey
Vicki Nelson
Java Manjaro
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EXHIBIT HALL OPEN
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Products, services, and supports you love are on exhibit! Conference totes are available at the Tobii Dynavox table! Inside your tote bag, you will find your Safari Tour passport. Collect all the stamps and be entered to select one of our incredible prizes.
First Stop for Your Conference Tote: Tobii Dynavox
West Pathway, South Pathway
South Pathway
First Stop for Your Conference Tote: Tobii Dynavox
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Natural History Study Open
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Be part of the Natural History Study right here at the conference! Contribute to scientific advancements and help shape the future for those affected by AS. Your participation could make all the difference.
Conference Executive Center: Portia
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Sibling Music Session (5-18)
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An UPBEAT start to the day! Therabeat, Inc. will guide siblings through musical exercises to follow the beat and have fun. Siblings will learn how music can serve as a creative and emotional outlet and learn how to connect and play with their sibling.
Chelsea Kinsler, LPMT, MT-BC
Jennifer Puckett, LPMT, MT-BC
Therabeat, Inc.
Indigo Bay
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Opening Comments
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Hear from the incoming ASF Board President, Lesley McCallister. Lesley will share insights on the state of the ASF and set the tone for an incredible conference experience!
Lesley McCullough McCallister
Kilimanjaro 2
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Keynote with Dr. Ype Elgersma
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Attendees will get an inside look into what mice models can and cannot tell us about Angelman syndrome. Hear from Angelman syndrome research pioneer, Dr. Elgersma, on his work which has made a profound impact on better understanding Angelman syndrome and moving preclinical work forward.
Ype Elgersma, PhD
Kilimanjaro 2
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The Journey to Better Therapeutics – a History of Science funded by ASF
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Dive into the ASF-funded studies that have gotten Angelman syndrome therapeutics to where they are today. Review the Angelman syndrome research pipeline with Dr. Rebecca Burdine, Chair of the ASF Scientific Advisory Committee. Leave understanding the next steps critical to getting Angelman syndrome therapeutics into the next phase.
Rebecca Burdine, PhD
Kilimanjaro 2
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Sibling Play Session (ages 4 - 10)
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Inviting siblings (ages 4-10) to build social connections and friendships through play! Check-in and check-out is required.
Kathryn Ely
Indigo Bay
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The Ups and Downs of being an Angelman Sibling (ages 11 - 18)
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Inviting siblings (ages 11-18) to an unfiltered safe space with ASF Counselor, Shannon Barlow. During this session, sibs of people with Angelman syndrome can connect with others who get it and their similar concerns, frustrations, joys, and insights. If you are unsure if your child is emotionally ready for this type of space, please reach out to kely@angelman.org and get connected with Shannon prior to the session.
Shannon Barlow
Acacia Hut
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BREAK
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One-on-One Consults and Small Group Appointments with Experts
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Get personalized advice at the ASF Family Conference! Experts in IEP, Counseling, Behaviors, Insurance, Toileting, Finance, Adult Transition, and more will host 1-on-1 appointments and small group sessions. Don't miss this chance to gain valuable insights and get answers to your questions!
Various, Sagewood, Rosewood
Sagewood,
Rosewood
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Friends with Wings: Mini Golf (all ages)
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Get ready for some hole-in-one fun! ASF's Friends with Wings is hosting mini golf at the ASF Family Conference! For siblings, friends, cousins, and the like (18 & under), it's the perfect chance to connect, have fun, and bond over loving someone with AS.
Kathryn Ely
Indigo Bay
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Research Panel and Q&A
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World-renowned researchers will cover the vast Angelman research landscape, addressing basic research (understanding how AS works using mouse/animal models) to translational research (therapeutic development). Attendees will gain a further understanding of existing and upcoming treatment strategies, including unsilencing approaches, downstream target rescue, the promise of gene therapy strategies, and critical therapeutic delivery mechanisms.
Moderator: Dr. Dan Harvey
Ben Philpot, PhD
Daniel Harvey, PhD
Mark J. Zylka, PhD
Ryan Butler, PhD
Ype Elgersma, PhD
Kilimanjaro 2
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Genetics of AS 101: Why Better Therapeutics are Possible
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Want to learn more about the Genetics of Angelman syndrome? Genetics 101 is designed for people new to this journey or attendees who want a refresher on the genetic causes of AS. Add new terms to your glossary, such as UBE3A, genotype, phenotype, antisense transcript, paternal imprinting, ubiquitin pathway, and many more!
Rebecca Burdine, PhD
Kilimanjaro 1
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Three Years Into Angelman Clinical Trials: What We Know Now
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Now that Angelman syndrome clinical trials have been underway for three years, principal investigators and Angelman experts will provide an overview of clinical trials in Angelman syndrome, describe the clinicals trials experience over the past three years, and recommendations for families considering participating in clinical trials.
Anjali Sadhwani, PhD
Berry-Kravis MD, PhD
Lynne Bird, PhD
Wen-Hann Tan, MD
Kilimanjaro 2
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Genetics of AS 102: Genotypes & Family Planning
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Join Katie Garbarini, Certified Genetic Counselor, for a review of the differences between genetic subtypes in Angelman syndrome. Katie will review differences in symptoms, inheritance, and genetic testing for each AS subtype.
Elizabeth Jalazo, MD
Katie Garbarini, MS, CGC
Kilimanjaro 1
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Survey Says... Your Data Matters! Presented by LADDER, GASR & NHS
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As Angelman syndrome parents, you are asked to fill out many surveys and participate in studies to help researchers, clinicians and pharmaceutical companies better understand Angelman syndrome. But where does all of the data go? What is happening with the submitted information? Has it made a difference? LADDER, Global Angelman Syndrome Registry (GASR), and Natural History Study (NHS) are here to show you just how important your efforts are in research, clinics and trials.
Anne Wheeler, PhD, LADDER Project Lead
Katie Garbarini, MS, CGC
Niki Armstrong, MS, CGC
Wen-Hann Tan, MD
Kilimanjaro 2
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Advocacy 101
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Amanda Moore (ASF) and Ryan Fischer (FAST) will develop caregivers into advocates who can confidently approach local, state, and federal legislation. Attendees will be equipped with tools to effectively educate government officials on Angelman syndrome, build relationships with decision makers, and play a key role in changing public policy.
Amanda Moore
Ryan Fischer
Kilimanjaro 1
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Friends with Wings: Pool Party
(ages 5 – 18)
(ages 5 – 18)
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Make a splash at the Friends with Wings pool party. Siblings, cousins, and friends invited for a fantastic time filled with laughter, connection, and cool pool vibes!
Kathryn Ely
Shooting Stars Indoor Basketball Pool
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ASF Clinical Network Panel
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Leading physicians in the field of Angelman syndrome will take the stage to discuss their clinical experience in treating Angelman syndrome. The panel will cover best practices to treat and manage Angelman syndrome and health considerations throughout the lifetime of the individual living with Angelman syndrome.
Moderator: Dr. Liz Jalazo
Cesar Ochoa-Lubinoff, MD, MPH
Elizabeth Jalazo, MD
Jean Baptiste LePichon, MD, PhD
Mark Nespeca, MD
Robert Carson, MD, PhD
Ron Thibert, DO, MsPH
Wen-Hann Tan, MD
Kilimanjaro 2
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Clinician Q&A
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The floor is now open to ask the experts about caring for a loved one with Angelman syndrome.
Moderator: Dr. Liz Jalazo
Cesar Ochoa-Lubinoff, MD, MPH
Elizabeth Jalazo, MD
Jean Baptiste LePichon, MD, PhD
Mark Nespeca, MD
Robert Carson, MD, PhD
Ron Thibert, DO, MsPH
Wen-Hann Tan, MD
Kilimanjaro 2
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10 Basic Financial Steps for Special Needs Caregivers
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Join Mass Mutual's Head of SpecialCare, Kelly Piacenti ChSNC®, to plan for the future needs of dependents with special needs. Future considerations covered include medical, educational, employment, housing, travel, transportation, social, recreational, and skill development.
Jerry L. Hulick, CLU, ChFC, ChSNC, CLTC
Kelly Piacenti, MA, ChSNC®
Kilimanjaro 1
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BREAK
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Industry Introduction with Ultragenyx
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Emil Kakkis, MD, PhD
Kilimanjaro 2
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Industry Overview and Updates from: Ionis, Neuren and Ultragenyx
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Hear from the pharmaceutical and biotech companies currently invested in Angelman syndrome and receive highly anticipated updates on the current and future status of Angelman syndrome clinical trials.
Ionis Pharmaceuticals
Neuren Pharmaceuticals
Ultragenyx
Kilimanjaro 2
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People of Color Social
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Join us for a People of Color social led by board director, Taylor Geathers. Connect with other families, learn about the ASF's ACCESS initiative, and enjoy refreshments.
Taylor Geathers, MSW
Aloeswood
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Resilience Reception: Glow Circus
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Join us for a RESILIENCE RECEPTION as we celebrate the AS community with light fair, drinks and bright entertainment. Friendly event to all ages.
Angelman Syndrome Foundation
Kilimanjaro
Time
Title
Location
Presenter
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EVENT CHECK IN OPEN
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Registration Booth A
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Parents of Multiples w/ AS Coffee & Convo
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Are you a parent of multiple individuals living with Angelman syndrome? You’re on a unique journey with struggles only another parent in your situation can fathom. Grab a coffee together and enjoy some meaningful conversation.
Java Manjaro
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Adult Sibling Donuts
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Calling adults who have siblings with Angelman syndrome. As adults, you face new considerations, fears, and hopes with your sibling in this chapter of life. Connect with others who share your journey.
Lesley McCullough McCallister
Main lobby sitting area outside Great Karoo Gift Shops
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EXHIBIT HALL OPEN
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Products, services, and supports you love are on exhibit! Conference totes are available at the Tobii Dynavox table! Inside your tote bag, you will find your Safari Tour passport. Collect all the stamps and be entered to select one of our incredible prizes.
First Stop for Your Conference Tote: Tobii Dynavox
West Pathway, South Pathway
South Pathway
First Stop for Your Conference Tote: Tobii Dynavox
-
Natural History Study Open
-
Be part of the Natural History Study right here at the conference! Contribute to scientific advancements and help shape the future for those affected by AS. Your participation could make all the difference.
Conference Executive Center: Portia
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SibShop Round 2
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In this Sibshop, siblings will come together to recap what they have learned through the experience and find practical ways to apply their learnings for themselves and with their siblings when they return home. Open to ages 5-18.
Abigail Turnwald, MS CGC
Indigo Bay
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Building Resilient Caregivers: Caring for you as a Parent
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Join us for a powerful mental health seminar focused on building resilience in caregivers by becoming more compassionate with yourself! Learn valuable strategies to stay strong and balanced while caring for your loved ones. Don't miss out on this opportunity to recharge and connect.
Amanda Griffith-Atkins
Kilimanjaro 2
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Toilet Training Tips & Tricks for Caregivers of Individuals with Developmental Disabilities
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By popular demand, the 2024 ASF Family Conference will offer a new breakout session "Toilet Training Tips & Tricks for Caregivers of Individuals with Developmental Disabilities." Presented by Colin Muething, Ph.D., BCBA-D, an Associate Professor in the Department of Pediatrics at Emory University School of Medicine and a psychologist at Marcus Autism Center, where he serves as Program Director of the Complex Behavior Support Program.
Colin Muething, PhD, BCBA-D
Kilimanjaro 2
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Adulthood Interactive Workshop
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Join our interactive workshop focused on transitioning your loved one with Angelman syndrome into adulthood. Discover what matters most to you, hear from other parents about the road bumps they faced, and prepare for this new chapter.
Amanda Moore
Katie Garbarini, MS, CGC
Kilimanjaro 1
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Friends with Wings: Animal Park Adventure
(ages 4 - 10)
(ages 4 - 10)
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Friends with Wings invites siblings, cousins, and friends ages 4-10 to the Kalahari Animal Park! Join our group adventure with limited spaces available (50). A $10 donation to cover expenses is appreciated.
Kathryn Ely
Indigo Bay
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Friends with Wings: Laser Tag
(ages 11 - 18)
(ages 11 - 18)
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Friends with Wings invites siblings, cousins, and friends ages 11-18 to Kalahari's on-site Laser Tag arena! Closed-toed shoes required. Limited to 50 friends. A $10 donation to cover expenses is appreciated.
Kathryn Ely
Indigo Bay
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One-on-One Consults and Small Group Appointments with Experts
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Get personalized advice at the ASF Family Conference! Experts in IEP, Counseling, Behaviors, Insurance, Toileting, Finance, Adult Transition, and more will host 1-on-1 appointments and small group sessions. Don't miss this chance to gain valuable insights and get answers to your questions!
Sagewood, Rosewood
Rosewood
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The Relationship Between Cortical Visual Impairment (CVI) and Communication
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Karen Erickson, PhD
Kilimanjaro 2
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Food is Medicine
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People with Angelman syndrome demonstrate a higher than average response to dietary therapy. This session will help provide a better understanding of what dietary therapy is, what benefits are seen and who benefits most, as well as side effects.
Heidi Pfeifer, RD, LDN
Kilimanjaro 1
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Behaviors and Anxiety in Angelman Syndrome
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Join us for a session on managing the unique and challenging behaviors in Angelman syndrome. Christopher Keary, MD, Behavioral Director at the MGH Angelman Syndrome Clinic, and Cesar Ochoa-Lubinoff, MD, MPH, ASF Clinic Director at Cedars-Sinai, will offer valuable insights on evaluation, management, and recommended treatment options.
Cesar Ochoa-Lubinoff, MD, MPH
Christopher Keary, MD
Kilimanjaro 2
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Effective Tips for Setting up an IEP
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Don't miss this opportunity to gain valuable insights and support in the IEP process from expert IEP cosultant, Staci Zimmerman. Staci specializes in creating positive educational programming for children with Angelman syndrome. She collaborates with schools to ensure students have the support and tools they need to succeed. Staci can assist with advocacy for IEP and other services, review IEP documents, and participate in IEP meetings.
Staci Zimmerman, MEd
Kilimanjaro 2
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Starting Over with Communication
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Join us for "Starting Over with AAC" presented by Erin Sheldon, M.Ed. Learn effective strategies to reengage your loved one with AS in Augmentative/Alternative Communication (AAC). This session is perfect if you've felt unsuccessful, tried and/or abandoned AAC altogether. Perhaps you are unsure if your current system is working. It's a judgment-free zone, reminding you that starting over is better than giving up.
Kelly Meissner
Kilimanjaro 1
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Friends with Wings: Movie
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Friends with Wings presents an afternoon movie! Drop off your kids to unwind and enjoy a screening of Finding Dory. "Finding Dory" shares a story of resilience that kids can relate to. It exemplifies how to face challenges head-on, adapt to new situations, lean on friends for support, and maintain hope even in the most difficult times.
No RSVP Required.
Kathryn Ely
Indigo Bay
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Friends with Wings: Animal Park Adventure
(ages 11 - 18)
(ages 11 - 18)
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It's time for our older siblings, cousins, and friends (ages 11-18) to take an animal safari adventure at the Kalahari. Limited spaces available (25). A $10 donation to cover expenses is appreciated.
Kathryn Ely
Indigo Bay
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Epilepsy in Angelman Syndrome: A-Z
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Join us for a comprehensive general session on epilepsy in Angelman syndrome, featuring a distinguished panel of experts. Dr. Nespeca will lay the groundwork by identifying and explaining the types of seizures commonly seen in individuals with Angelman syndrome. Following this, Dr. Thibert will delve into treatment options and discuss Non-Convulsive Status Epilepticus (NCSE). Dr. Carson will wrap up the session with crucial insights on seizure preparedness and his groundbreaking research on NEM/tremors. Don't miss this opportunity to gain valuable knowledge and strategies to manage epilepsy effectively.
Mark Nespeca, MD
Robert Carson, MD, PhD
Ron Thibert, DO, MsPH
Kilimanjaro 2
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Aquatic Instruction for Individuals w/ AS
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Join us for a special aquatic instruction session with Brigette from Waves N' Wellness, designed for individuals with AS and their caregivers. Enjoy moving your bodies to great music and having fun in the water for a 30-minute session, additional time added for transitioning in and out of the water. Limited spaces are available due to the pool's capacity. Caregivers must attend and participate in the water with their loved ones, ensuring a supportive and enjoyable experience for all. Don't miss this unique opportunity to engage in a therapeutic and fun-filled aquatic activity!
Brigette Swain
Cabana Pool
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Sleep (or lack thereof)
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Amanda Tourjee, DNP, is dedicated to helping families navigate behavior and sleep management, which is a key function of her role at the MGH Angelman Syndrome Specialty Clinic. In this session, Amanda will cover common sleep disturbances in Angelman syndrome, such as decreased sleep, increased sleep onset latency, and abnormal sleep behaviors. She will discuss diagnostic testing like sleep studies and explore management and intervention strategies, including medications, supplements, sleep training, and environmental modifications.
Amanda Tourjee, DNP
Kilimanjaro 2
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Future Planning for You and Your Child, a Case Study for parents by a parent
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Planning for your child and yourself is crucial for a fulfilling life for both your child with Angelman syndrome and you as a caregiver. This session hosted by fellow parent, Erin Sheldon, offers practical strategies to include your child's perspectives in planning, involve more people in their support network, and ensure that parents and caregivers also achieve their own dreams and maintain a rich, fulfilling life.
Kelly Meissner
Kilimanjaro 1
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Aquatic Instruction for Individuals w/ AS
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Join us for a special aquatic instruction session with Brigette from Waves N' Wellness, designed for individuals with AS and their caregivers. Enjoy moving your bodies to great music and having fun in the water for a 30-minute session, additional time added for transitioning in and out of the water. Limited spaces are available due to the pool's capacity. Caregivers must attend and participate in the water with their loved ones, ensuring a supportive and enjoyable experience for all. Don't miss this unique opportunity to engage in a therapeutic and fun-filled aquatic activity!
Brigette Swain
Cabana Pool
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Insurance, Advocacy and Resources
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Join Eric Wright's session on navigating private insurance, government programs, and the supports set up nationally and locally for individuals with Angelman syndrome. Learn about government programs, Medicaid and beyond. Discover how to advocate for coverage and what to do when faced with rejections. Need personal support? Set up a 1:1 consultation with Eric free of charge.
Eric Wright
Kilimanjaro 2
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GI problems and management in Angelman syndrome
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People with Angelman syndrome often experience GI and digestive issues from infancy to adulthood. This session will help attendees understand the link between neurodevelopmental delays and the gut microbiome, as well as cover management and treatment for the most commonly observed GI issues in Angelman syndrome, such as constipation, gastroesophageal reflux, and abdominal pain, along with the less commonly reported issue of cyclical vomiting episodes and aspiration events, including prevention and treatment strategies.
Amanda Tourjee, DNP
Heidi Pfeifer, RD, LDN
Ron Thibert, DO, MsPH
Kilimanjaro 1
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Stepping Into AAC
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Stepping Into AAC, a program funded by ASF and presented by Tabi Jones and Rachael Langley, introduces Augmentative/Alternative Communication (AAC), provides guidance through early use, and offers resources for engaging school teams and caregivers. Dive into the activities, resources, and videos created to support and inspire your family at any stage of your AAC journey.
Rachael Langley
Tabi Jones
Kilimanjaro 2
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Transition Planning with Protected Tomorrows
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Transition Planning with Protected Tomorrows is a session designed to guide you through the overwhelming process of planning for a family member with special needs throughout their lifetime. Mary Anne Ehlert (CFP) will cover building a professional team, navigating guardianship and support decision-making, and finding the best residential, recreational, and day programs. Transform your uncertainty into positive action and secure a brighter future for your loved one.
Mary Anne Ehlert, CFP®
Kilimanjaro 1
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Get Involved with ASF
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Do you feel called to give back to the Angelman syndrome community? Want to know how you can help? Perhaps, you have been committed to the ASF mission for some time now and enjoy your involvement. This event is for you! Calling all Walk Coordinators, Committee Members, ASF volunteers, and community members interested in being involved to this informational social.
Alisa Tammaro
Chloe Knouff
Kilimanjaro 1
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Caregivers of Adults Mixers
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Inviting caregivers of adults to a social hour put on by honorary hostesses, Robin, Lesley and Dawn. Come enjoy a refreshment and community with fellow caregivers to individuals living with AS (18+).
Dawn Bly
Lesley McCullough McCallister
Robin R. Wilkerson, PhD
Aloeswood
Time
Title
Location
Presenter
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EVENT CHECK IN OPEN
-
Registration Booth A
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Natural History Study Open
-
Be part of the Natural History Study right here at the conference! Contribute to scientific advancements and help shape the future for those affected by AS. Your participation could make all the difference.
Conference Executive Center: Portia
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Continental Breakfast (regional/state)
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Enjoy breakfast as a community before you go! Tables will be organized by states/regions as our hope is to help you form local connections to take home with you.
Kilimanjaro 2
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Conference Recap
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Amanda Moore, ASF CEO, and Lesley McCallister, incoming ASF Board President, will share the conference highlights, share imporant updates, and celebrate the wonderful week together. Don't miss the wonderful video montage of all the best moments!
Amanda Moore
Lesley McCullough McCallister
Kilimanjaro
HOTEL CHECK OUT
Check-out is no later than 11:00am. After check-out, we invite you to stay a little longer and enjoy the waterpark till 3:00pm.
Main Lobby
Choose Your Own Adventure
Now that the conference is over, you can either hit the road, keep splashing at Kalahari, or go out and have some fun! The choice is completely up to you! If you're looking for thrills, you can find them at Cedar Point. You can also explore the Sandusky shoreline or take a ferry out to Kelley's Island or Put-In-Bay, both of which have a lot to offer! Whatever you decide, don't forget that the Angelman Syndrome Foundation is immensely grateful for your attendance at the 2024 Family Conference. See you next time!
Various
About the ASF Family Conference
Since 1991, the Angelman Syndrome Foundation has sponsored 17 family educational conferences that bring together the foremost authorities on Angelman syndrome.
The ASF Family Conference unites a diverse group of 1,000± individuals, including those with Angelman syndrome, their families, siblings, caregivers, clinicians, therapists, researchers, and friends.
Throughout the conference, attendees attend workshops, seminars, and presentations that cover a spectrum of topics, providing valuable insights into what we know about AS, how best to care for individuals living with AS throughout their lifetime, therapeutic approaches, and practical strategies related to Angelman syndrome.
Outside of education, attendees will experience community, connection, and celebration. These aspects are as integral as the conference’s educational components. Individuals and families who share similar journeys come together and create a network of support, understanding, and friendship.