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15% off in November!

All who donate $25USD or more during the month of November will receive a beautiful 2019 AЯRE Foundation Calendar.

From December 1, 2018 through January 31, 2019, anyone who donates $30USD or more will receive the 2019 calendar.

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Sünne van Gemert-Godbersen
Complex Care – An Administrative Headache!

And then another specialist is added to your child’s ‘team’ and sends you a 10+ page packet of paperwork to complete, which re-hashes all the information that you have provided to every other provider before. You arrive at the appointment and spend a large amount of time re-confirming and explaining everything in the paperwork. The specialist asks you to remember dates of procedures and tests, which seem lost in the ocean of your child’s countless visits. Don’t forget all the HIPAA & other forms you need to sign so that this information can be shared with every other provider involved.

Sound familiar?

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Strong Marriage

We asked Laura O’Shields if she would share her story about keeping your marriage strong through struggles with BOS child.  It’s a topic that we feel is difficult and not usually discussed. Thank you Laura for sharing your story!

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AAC - Getting started - Part II

I remember the day we put a speech device in front of our daughter. I genuinely thought she would pick it up and thank me for taking such good care of her. That turned out not to be true. In the beginning, using the device felt awkward and I interpreted that to mean I was doing it wrong. Now that I am helping other families to use speech devices, I always tell them that using the device is not going to come naturally at first. It’s going to feel weird because you and your child are learning to communicate using a completely different method than you are used to.

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AAC - Augmentative and Alternative Communication - Part I

My name is Caitlin Calder and my daughter Della has Bainbridge-Ropers Syndrome (ASXL3 mutation). I am starting my last year of graduate school at the University of Houston to become a speech-language pathologist (SLP) specializing in augmentative and alternative communication (AAC). Although I am drawing from my own experience helping my daughter learn to use a speech generating device, all of the strategies that I am recommending are evidence based and considered best practice for speech-language pathologists.

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Happy Father's Day

"It takes a big heart to hold a little hand." From taking a trip, learning a new skill, or just chillaxing -- ASXL children love quality time with their Dads. ASXL dads trek a challenging and uncertain path. Those who endure or step up to be on this journey with us are our ASXL superhero dads! Happy Father's Day!

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Management of Growth & Nutrition - Q&A with Dietician Dee Madore

Growth in children with ASXL syndromes is different from healthy children. Our children are characterized with IUGR (Intrauterine Growth Retardation) and severe feedings problems, as well as failure to thrive. With this in mind, we think it is important to take a different view on the growth and nutrition.  We asked Dee Madore five questions how to "Gain Healthy Weight"! Dee Madore has received her Master’s and Bachelor’s Degrees in Human Nutrition from the University of Maine, and she have been practicing as a Registered Dietitian for (gasp) 17 years.

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Trouble with sleep?

Abnormal brains and brain activity make going to sleep and staying asleep challenging for ASXL children.  These challenges are compounded with respiratory issues like sleep apnea and gastric dysmotility that slows bowel movements, which may wake the child in the middle of the night.

Even non-ASXL children and parents sometimes have trouble falling asleep.  Here are some tips to help with sleep!

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Adaptive Physical Education

Did you know that Physical Education (PE) is required by law and that adaptive PE should be on your child’s Individual Education Plan (IEP)?  If your child is visually impaired, your Physical Educator can work with his/her Teacher of the Visually Impaired (TVI) to meet the needs of your child.  Every child has a right to learn skills that their peers do and can leverage modified approaches to enhance their experience.

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AЯRE is thrilled to announce our partnership with UCLA and first ASXL Research Symposium in Los Angeles, California! At this conference, ASXL families will be seen in medical clinic and staff will take blood samples for storage and distribution to scientific and medical researchers. Our Geneticists will enroll families in the ASXL Patient Driven Registry  and provide clinical presentations about their work. In addition, numerous ASXL scientists and physicians will present and discuss their research.

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