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Resources, Research and Inspiration for individuals with Angelman Syndrome

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  • Diet Therapy

    5 Tips to help you save money on groceries for a therapeutic diet

    January 10, 2018 / Comments Off on 5 Tips to help you save money on groceries for a therapeutic diet

    1. Buy in bulk from big box stores like Costco, Sam’s Club or Bj’s Wholesale. 2. Look for coupons in the mail, newspapers, online or grocery store apps. 3. Create weekly menus with your budget in mind. 4. Shop around the perimeter of the store. -The middle aisle usually contains processed foods that you want to avoid. 5. Buy fruits and vegetables that are in season. Seasonal fruits and veggies are less expensive than when out of season. *Bonus: Buying the fresh cuts of meat with the higher fat content is less expensive than the lean cuts which is better for increasing the fat ratio on the diet.

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    Angelman Today

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  • AS Resources,  Diet Therapy

    Get Started On The High-Fat, Low-Carb Diet

    May 17, 2017 / Comments Off on Get Started On The High-Fat, Low-Carb Diet

    Let’s start with listing 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. Use the best quality fat sources. Eat real unprocessed foods will be the key to success. We have created a helpful resource within the Ultimate Amazon Special Needs Shop – Dietary Therapy Category. We have listed helpful books and healthy fat options that you can get delivered right to your door. Diet therapy could be challenging as most things are but it will be worth it! Amazon Prime…

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  • Books,  Diet Therapy,  Epilepsy

    Keto Power Comic Book Coming Soon!

    April 1, 2017 / Comments Off on Keto Power Comic Book Coming Soon!

    Very soon you will be able to purchase the first ever comic book pamphlet about the Ketogenic diet. Learn how to use Keto Power to help fight epilepsy. Written by Sybille Krafty Bellamy, Mom to Maxent. Maxent was born with Angelman Syndrome, he was medically fragile from the beginning of his life. Sybille was determined to learn how to spend time and money in the kitchen and not in the hospitals. We will keep you posted and let you know as soon as it is available.

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  • AS Research,  AS Resources,  Diet Therapy,  Epilepsy

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

    July 17, 2016 / 2 Comments

    By Sybille Kraft BellamyMother 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…

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    Angelman Today
  • Diet Therapy,  Epilepsy

    Matthew’s Friends – Ketogenic Dietary Therapies

    March 17, 2015 / Comments Off on Matthew’s Friends – Ketogenic Dietary Therapies

    Intractable (Drug Resistant) Epilepsy; 1 in 104 people are affected with epilepsy in the UK** and over 50 million worldwide.  It is one of the most common serious neurological conditions with approximately 30 different epilepsy syndromes and over 38 different types of seizures. The majority of cases of epilepsy can be treated successfully with modern anti-epileptic drugs (AED’s) used either as single agents or in combination.  However, approximately 30% of cases are classed as having drug-resistant or intractable epilepsy, where seizures persist despite the appropriate use of two or more AED’s and the possibility of achieving seizure freedom with additional medication is extremely low. Ketogenic Dietary Therapies:  The Ketogenic Diet…

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    Angelman Today

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    November 15, 2023
  • AS Resources,  Diet Therapy,  Epilepsy,  The Charlie Foundation

    The Fourth International Symposium For Diet Therapies

    November 6, 2014 / Comments Off on The Fourth International Symposium For Diet Therapies

    Matthew’s Friend’s Symposium – Liverpool UK 2014 By Sybille Kraft Bellamy A couple of weeks ago I had the opportunity to attend one of my favorite scientific symposiums: The 4th Global Symposium Ketogenic Dietary therapies for Epilepsy and other Neurological disorders. Over 27 countries were present sending the most eminent neurologists, researchers scientists in epilepsy, cancer, molecular biology and nutrition. They presented their clinical trials and laboratory results in the field of the Ketogenic diet. Angelman syndrome was represented by Dr. Elizabeth Thiele the neurologist from Mass General hospital in Boston who received the John Freeman award from Nancy Abraham (Co-founder of The Charlie Foundation) for her outstanding work in the…

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  • AS Family article,  Diet Therapy,  Epilepsy

    Eva’s Journey With Seizures And What Her Mom Is Doing About It

    July 11, 2014 / Comments Off on Eva’s Journey With Seizures And What Her Mom Is Doing About It

    By Claire Lerman On the 28th June 2013 our beautiful little 16mth old Eva was diagnosed with Angelman Syndrome. Just 4 months after her diagnosis Eva started with epilepsy and has been in & out of hospital numerous times. All the medications we were given completely failed to control Eva’s seizures. We had read about something called a Ketogenic diet & we were desperate for Eva to be able to try this as a form of medication. After battling to get consent to go onto the diet we eventually had our neurologist’s consent. Eva started the diet on the 4th March 2014 at which point her seizures had ramped up…

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  • AS Family article,  Epilepsy

    Bye-Bye Winter Hello Summer!

    May 8, 2014 / Comments Off on Bye-Bye Winter Hello Summer!

    Bye-Bye Winter Hello Summer! By Sybille Kraft Bellamy We are done with snowstorms, freezing rain and below zero temperatures. Now it is time to enjoy the warmer weather. Unfortunately our children with AS are not well prepared for the hot temperatures. Max, 12 years old, deletion + is extremely sensitive to hot weather and humidity. To avoid any serious health issues we have to ANTICIPATE. Children and adults with Angelman syndrome have body temperature regulation problems. They cannot adapt to rapid temperature change or extreme temperatures. In Max’s case he turns pale, his heart rate gets elevated and he becomes very lethargic. A major priority is to control his hydration.…

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  • Diet Therapy,  Epilepsy

    Healthy Fats For The Brain

    January 11, 2014 / Comments Off on Healthy Fats For The Brain

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  • Diet Therapy,  LGIT Recipes

    The Power of Cooking

    September 13, 2013 / Comments Off on The Power of Cooking

    The Power of Cooking Angelman syndrome, ketogenic diets and LGIT By Sybille Kraft Bellamy   One of the best ways to naturally help our angels is by giving them a nutritious healthy diet. Our angels are fragile and very sensitive to their environment. Little things, minor changes can trigger dramatic consequences. Each child is unique, each parent is special. We have to rediscover the power of food. Therapeutic diets like ketogenic diets have been used for years to help control epilepsy. Today, the LGIT  (Low Glycemic Index Treatment) is one of the easiest diets to give to our angels. It is one of the weapons we can use to protect…

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    Angelman Today

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Our story

My son, Nathan, was diagnosed with Angelman Syndrome shortly after his second birthday. He didn’t walk until he was almost three years old. The prognosis that doctors gave him was grim. He wouldn’t be able to walk, talk, or do much of anything. The doctors said that Nathan would  have epilepsy, constipation, feeding issues, acid reflux, and sleep issues. Therefore, he would require lifelong care.

Today, Nathan runs, says “Mama and Papa”! Nathan’s seizures, that started when he was 15 months old, have stopped due to dietary therapy. Also, he has no more acid reflux, no more constipation! His sleep disorder is under control without medication. He sleeps ALL NIGHT! We have beaten the odds of Angelman Syndrome. He is not lucky, his progress was not by chance but because I started him on dietary therapy very early. Monitoring his health very closely has been crucial. Very specific, and in-depth testing, allowed us to dial in his health like a fine tuned race car.

This is the hope and inspiration I want to share with the world! His genes are not his destiny.

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Angelman Today – A Global Perspective on Angelman Syndrome

Angelman Today is an online resource featuring information, research and inspiration for all things related to Angelman Syndrome. This website is created for families by families. Our articles feature information that we hope will revolutionize the current care and standard of practice for the treatment and education of those affected by AS.

Angelman Today offers every Angelman Syndrome Foundation across the globe the opportunity to submit articles so that everyone can benefit from the brilliant minds involved in the care, research and treatment of those affected by AS. We embarked on this project to put the best and brightest from around the world at your fingertips.

Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families. It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers. The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions, products or procedures that appear on this website or online magazine. All matters regarding your health should be supervised by a licensed health care physician. Copyright 2023 Angelman Today. All rights reserved worldwide.

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