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Thank you to everyone who came to the Night with the ASF in Cincinnati on Monday. It was wonderful to see everyone! I enjoyed seeing familiar faces, greeting new folks and spending time with our amazing community. I'm looking forward to the next one in Los Angeles. - Amandapic.twitter.com/5lQ4jEmMpT
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Announcing the ASF Virtual Family Conference! This two-week series of webinars during July will focus on topics you want to learn about most – Communication, Diet, Seizures 101, Clinics, Ask the Doctors and more – all from the comfort of your home. More information shared soon.pic.twitter.com/OMNFSsnOBT
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Great evening with families from the Cincinnati area!
#asfpic.twitter.com/EyWRzdV4tT
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What does the future of gene editing look like? Listen to (or read) an NPR interview that highlights UNC Professor Mark Zylka’s work with AS and the CRISPR method, which ASF has funded in the past, to get his take on where we’ve come from and what’s ahead.https://tinyurl.com/vb4whzt
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We know what’s in the heart of individuals with AS and in the hearts of their family members – sheer determination. Join us for the 2020 ASF Walk to show your determination to help!
#walkforangelman https://www.angelman.org/walk/ pic.twitter.com/FAfwsGTvDC
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Are you DETERMINED to participate in the 2020 ASF Walk but there isn’t a location near you? Or already have plans for May 16th? That doesn't mean you have to miss all the fun! Sign up to be a virtual walker and walk when and wherever you want! https://www.angelman.org/walk/ pic.twitter.com/zbGVsBNSWp
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International Angelman Day 2020, Feb. 15, is when we rally to raise AS awareness. We need your help! Send us photos of your individual with AS to use to educate others – and be entered in a drawing to win a copy of the 2020 edition of Angelman A to Z. https://www.angelman.org/event/iad-2020/ pic.twitter.com/7uTKYS3cZn
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Here are some helpful tips for getting through the night. https://angelmansyndromenews.com/2020/01/16/tips-for-improving-sleep-in-children-with-angelman-syndrome/ …pic.twitter.com/STBhWEYbws
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AmazonSmile hoax! If you receive an email asking you to change your AmazonSmile charity from the ASF to a different charity, do not take any action. Our AmazonSmile account remains active, and we appreciate all the 1,600 people who support us in this manner.pic.twitter.com/aUe8ZB2YNn
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ASF CEO Amanda Moore was a guest on WCG Institute’s Podcast: Pioneers of Clinical Research. Listen as Amanda shares her family’s journey - from receiving the initial diagnosis through Jackson’s early therapies. https://www.buzzsprout.com/300854/2484200 pic.twitter.com/SosCjtoZzy
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A few tips to get you started as you plan for the future of a child with Angelman syndrome. https://angelmansyndromenews.com/2020/01/06/planning-for-the-future-when-you-have-a-child-with-angelman-syndrome/ …pic.twitter.com/165tIumSRI
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Newly diagnosed? If you don’t know where to turn as you are taking those initial steps on this journey, ASF is here to help. Fill out our newly diagnosed form to get connected to the educational pieces, resources, and support you need! https://www.angelman.org/what-is-as/newly-diagnosed/ …pic.twitter.com/F67WhsdxKV
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Ava is Determined! “My mom and I work hard every day to learn independent skills, and even getting involved in the community to let my light shine beyond my syndrome! I am determined to show others that they can too!” Register: http://angelman.org/walk
#walkforangelmanpic.twitter.com/tqktizvSg8Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Thank you Boston! Around 70+ people came out to the 1st Night with the ASF. It was so nice to see everyone and celebrate Dr. Ron Thibert and the staff at Mass General for all they do. The next Night out will be in Cincinnati on February 3, with Los Angeles coming later.pic.twitter.com/n8rroAplwN
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The New Year is the time to prepare for the next steps on your journey. At ASF, our plans include revamping some of our online training series. What are your goals for your individual with AS in 2020? And how can we help you reach them?pic.twitter.com/0x9M9T3e9m
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Protected Tomorrows’ Parent University webinar series starts tomorrow, 7:00 p.m. CST! Free webinars will address many concerns of AS families: future care funding, gvt benefits, residential options and more. Visit the link below and register today. https://tinyurl.com/spcvsjv pic.twitter.com/T6tY1Sln1e
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The clinic at UCLA - the Center for Autism Research and Treatment - is now accepting AS patients. To schedule an appointment or get more information, contact Carese Stephens (310) 206-7404 / CMStephens@mednet.ucla.edu.pic.twitter.com/Vv1NLi9Phm
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Week #1 and almost 1,900 people have registered for the 2020 ASF Walk! Let’s get to 10,000 by 4/1/20!! Take advantage of the $25 registration. Check our site for new locations and register today!
#walkforangelman http://www.angelman.org/walk pic.twitter.com/Dhr5MrTEt5
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We teamed up with
@angelmantoday for their 2020#AngelmanPhotoContest. The Top 12 winning photos will be on the cover of the 4th edition of Angelman A to Z. Stay tuned for more information about the release date for the 4th Edition of Angelman Syndrome A to Z!pic.twitter.com/5MQr4kgNMe
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If you want to make AAC fun for the whole family, watch this video from the ASF Communication Training Series by Dr. Caroline Musselwhite. Learn what aided language stimulation means and how modeling AAC systems can be FUN for the whole family! http://youtu.be/zOr7MO7ZnzM pic.twitter.com/3Nn82CVLOg
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