Home » Archive for "AS Resources"

Products To Help You Get Started On The High-Fat, Low-Carb Diet

We will start with healthy fat options that may not be so easy to find at your local grocery store. It is important to note that when starting a high fat therapeutic diet make sure you are being followed by a medical professional and using the best quality of fat sources. Here are links to order on amazon.com to get it delivered right to your front door.

Here is the list of healthy fat sources: Coconut Cream, Organic Ghee, Grass Fed Butter, Extra Virgin Olive oil, Coconut Oil, MCT Oil, Avocado Mayo, Avocado Oil, Duck Fat, Beef Fat, Black Olives, Green Olives, Kalamata Olives, and Roasted Walnut, Hazelnut and Avocado Trio Oils.

KayserBetten beds and how they can provide a safe night’s sleep for you and your Angel.

The KayserBetten bed is one of the most highly recommended beds by parents of children with Angelman Syndrome. This bed will meet your child’s medical, safety and behavior needs.

One comment we keep hearing from parents is how well THEY sleep at night knowing their child is safe in their room.

The beds are spacious, call and find out the right size for your child.

The KayserBetten bed may be eligible through your insurance provider.

For more info call 1-800-574 ext. 308

If you have a KayserBetten bed and would like to share your story with us, it could be featured in the next edition of Angelman Today. Email the editor at Lizzie@angelmantoday.com

The subscription box designed for children with autism and those with sensory needs

AAC App Discounts for Autism Awareness Month April 2017

Here is a complete list of Augmentative and alternative communication (AAC) apps that are on sale for a limited time during this month of April. Links below make it easy to find the right app from the (ios) app store.

*CoughDrop and Alexicom are also available for android devices:

Note: Use the Family Share program (ios) to download the apps to your mulitple devices.

3 Days ONLY – 50% Off most popular AAC apps

To celebrate Autism Acceptance Month AssistiveWare will be offering a 50% discount on 4 of our popular AAC apps: Proloquo2Go®, Proloquo4Text, Pictello and Keeble. Gateway to Language & Learning©, the core word vocabulary available through an in-app purchase in Proloquo2Go, will also be at half price.

The discount, available worldwide on the App Store, will be in effect from April 2nd until and including April 4th.

If you buy more, you save more

The discount also applies to Apple’s Volume Purchase Program for Education. When your school or educational organization purchases 20 copies or more, you get an additional 50% off!

Spread the word!

Do you know people who could benefit from these apps? Make sure you share the news about this limited-time discount!

If you have any questions about the discount please contact their support team at support@assistiveware.com

* Please note: The discount percentage is based on the US App Store. Exact prices vary from country to country. Bundles will not be discounted during this promotion.

Holiday Gift Guide 2016

It is not always easy to try to find the perfect gifts for our Angels for the holidays, so here are some suggestions from our fellow Angelman parents.

The links to these products in the presentation work directly to the websites where you can purchase these items. Enjoy!

You can download this file in a PDF with live working links here: 2017holidaygiftguide


50% Off Proloquo2Go To Celebrate AAC Awareness Month

50% off to celebrate AAC Awareness Month

Did you know that each October the international AAC Awareness Month is celebrated around the world to commemorate and build awareness about Augmentative and Alternative Communication?

Because this is a very special month for our community Assistiveware will be offering a 50% discount on apps Proloquo2Go®, Proloquo4Text™ and Keeble™. Gateway to Language & Learning©, the core word vocabulary available through an in-app purchase in Proloquo2Go, will also be discounted.

Another reason to celebrate!

They are excited to announce that during the AAC Month they will be releasing Proloquo2Go in French! The French version of the symbol-based communication app will be live on the App Store on October 5.

3 days of discounts

The 50% discount on these products will be in effect from Wednesday October 5, World Cerebral Palsy Day, until Friday October 7.

Discount on high volume purchases

The discount will also apply to Apple’s Volume Purchase Program for Education making this a great opportunity to buy more and save more!

Seizure Tracker App By Birdhouse For Epilepsy

Birdhouse for Epilepsy – Track seizures, identify triggers, & organize important health information for yourself and loved ones.

Simplify & organize your own care or someone else’s by helping you identify seizure triggers, keep a medication log, evaluate diets, & ensure you’re on the path to success.

Birdhouse for Epilepsy is the newest app from the creators of 5-Star Birdhouse for Autism. Birdhouse apps have been featured on Parents.com, HuffingtonPost, Smart Apps for Special Needs, Generation Rescue, Autism Speaks, The Friendship Circle, and more!

Click here to download from the App Store

The Low Glycemic Index Treatment for Angelman Syndrome and Prader-Willi Syndrome

By Sybille Kraft Bellamy
Mother of Maxent, AS 14 years old.

Thirteen years ago in July 2003 Maxent was diagnosed with Angelman syndrome (AS), he was 18 months old.

Today he is a handsome teenager in excellent physical condition with no medical issues. Nevertheless, this was not always the case. From infancy to his toddler age he was chronically sick and he spent more time in the hospital than at home. Very quickly I had the certitude that diet should be the best accessible and fastest way to help him.

Following my own observation and encouraged by Max’s pediatrician (and later by our neurologist), I started paying attention to his diet and removed most of the simple carbohydrates and insisted on replacing them with all kinds of fats.
The change confirmed that my maternal instinct about Max’s incapacity to deal with blood sugar fluctuation was correct.

The low carbohydrate/high fat diet was and will always be his first line of treatment like many other patients with severe disorders.

My confidence and enthusiasm in nutritional therapy is being shared by many parents.
Unexpectedly, a couple of years ago when I was put in contact with Maria Picone (through Gary Taubes) I had an immediate connection. We felt that many of our everyday battles were very similar, and our energy and desire to share our success with the diet with our community was a necessity.

Maria’s daughter, Tea, has Prader-Willi syndrome (PWS). I had the pleasure to meet her in her school with her friends and teachers and I was truly impressed by her personality.
She is a beautiful, smart little girl full of energy and very talkative!

Angelman syndrome and Prader-Willi syndromes were the first imprinted genetic disorders to be described in humans. Both syndromes are associated with loss of the chromosomal region 15q11-13( band 11 of the long arm of the chromosome 15).
This region contains the paternally expressed genes SNRP and NDN and the maternally expressed gene UBE3A.

Paternally inheritance of a deletion of this region is associated with PWS characterized by hypotonia, obesity and hyperphagia. Maternally inheritance of the same deletion is associated with AS (characterized by epilepsy, tremors and sleeping disorders).

* https://en.wikipedia.org/wiki/Genomic_imprinting
* http://www.ncbi.nlm.nih.gov/pubmed/11180221

In fact, many children with AS present typical characteristics of PWS, like an insatiable appetite and hormonal disorders. Also, some children with PWS suffer from epilepsy, also very common in AS.
It is well-known that patients with AS greatly benefit with therapeutic diets but it appears that patients with PWS do as well.They have better appetite control and a better body muscle mass repartition.The diet is beneficial for both syndromes, on a physical and cognitive aspect.

Many studies around the world confirmed the positive result on the diet with a better control of the epilepsy, however the full extent of the diet with some syndromes is not well-known because of the lack of data.

Patients and their caretakers need a data bank where they can have access to information concerning specific medical protocols and observations from patients and professionals from the medical field.

TREND Community was created to give patients a place to share their stories and contribute real-world data that will inform other patients, clinician, scientists and researchers. It is turning anecdotes into evidence.
TREND Community Initiatives connect its patient communities with leading specialists to collectively evaluate the effectiveness of specific therapies, diet or other environmental interventions. The Angelman Syndrome Diet Initiative is the first initiative for the Angelman community.

The AS Diet Initiative will introduce a group of individuals with AS to a pre-ketogenic diet and track patient-reported outcome measures hunger, cognition, behavior, energy, body composition and quality of life. This specific investigation of AS ketogenic diets is a wonderful opportunity to bring new hope for many patients and their families.

The diet Initiative will be carried out under the guidance of Beth Zupec-Kania, RDN from the renowned Charlie Foundation.

I will have the pleasure to bring my expertise of Angelman syndrome and diets. I will share all the positives outcomes I obtained with LGIT/MCT but also provide caution and reminders that this is a medical diet and must be done under the supervision of your doctor.

The AS Diet Initiative is sponsored by Gary Taubes, co-Founder and Director of Nutrition Science Initiative (NuSi), and Robert Goldstein.
We are extremely thankful to Gary Taubes and his ongoing support to help us spread awareness of the wonderful effect of the diet on our children health.

If you would like to learn more about AS Diet Initiative or request an invitation to join send an email to interested@trend.community



1 2 5