A place where education, community, collaboration, and support come together to create an educational and empowering experience for all!
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*agenda is subject to change.
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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
First Stop for Your Conference Tote: Tobii Dynavox
We are so glad you're here! Join us to kick off the 2024 ASF Family Conference with C.E.O, Amanda Moore.
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.
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
First Stop for Your Conference Tote: Tobii Dynavox
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.
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.
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.
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.
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.
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.
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.
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!
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.
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
First Stop for Your Conference Tote: Tobii Dynavox
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.
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.
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!
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.
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.
Inviting siblings (ages 4-10) to build social connections and friendships through play! Check-in and check-out is required.
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.
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!
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.
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
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!
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.
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.
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.