Newly Diagnosed: You Are Not Alone on Your Journey

Whether you are a patient or a caregiver, it’s important to remember that you are not alone on this journey with Angelman syndrome and that others have been in your shoes. Here’s a collection of some of our columnists’ words that they would like to share to help guide, inspire, and encourage you.

My Daughter Is Living the Good Life Despite Angelman Syndrome

As columnist Mary Kay describes a week in the life of her daughter Jess, she realizes that, despite the restrictions imposed by Angelman syndrome, Jess is still living a full, good life.

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Give Up Hope? Wrong Prescription, Doc

Columnist Terry Jo Bichell explains that hope is a treatment that can help with any disease — hope for a treatment, hope for a breakthrough, hope for a cure. Whatever it is, it’s important to not give up that hope.

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Choosing an AAC Device for Your Angel

Mary shares her experience with finding an augmentative and alternative communication device that best meets the communication needs of Jess. What’s the best one? The one they will use, she says.

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Researching New Therapies: Can We Learn to Set Broken ‘Brain Bones’?

Terry has hope that there will one day be a cure for her son Lou. There are a number of promising therapies in the pipeline that could make it possible to set his broken “brain bone.”

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