Angelman Today January 2017




Digital Edition

Resources | Research | Inspiration

Happy New Year

International Angelman Day 2017

CONTENTS NEWS 03. Editor’s Letter 04. Upcoming Events 05. Rare Disease Day 06. Health Topic - Constipation 07. Keto Power Comic Book 08. CW Hemp Oil 10. Helpful Products 11. Angelman Today Contest Winner 12. If I Need Help Products And Discount Code 20. #LifeWithAnAngel 23. The History of Angelman Syndrome 22. Contributors

ANGELMAN AND ASSOCIATED FOUNDATIONS 09. Associacao Síndrome de Angelman Portugal 13. The Angelman Respite Centre - Quebec Canada 14. Angelman Syndrome Foundation 18. The Great Bike Giveaway 19. International Angelman Day - February 15th 24. Our Partners

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EDITOR’S LETTER

We welcome in this new year in the spirit of hope! The future for individuals with Angelman Syndrome is looking brighter than ever!

We are seeing advancement in scientific research that seems to be happening at light speed. More and more families are starting the Low Glycemic Index Treatment (LGIT) and experiencing the most successful treatment for Angelman Syndrome available today!

Angel on the cover: Eli Caldwell

I see parents actively learning about the health benefits that even the simplest diet changes can have on our Angels.

This brings me so much joy because I know first hand how much diet has transformed Nathan’s health.

Cheers to a new year of better health for our Angels! A healthy diet is the very foundation of true health and the most powerful tool, we as parents, can use to support our Angels.

Lizzie Sordia Editor-in-Chief Email: Lizzie@angelmantoday.com Twitter: @LizSordia Facebook: @angelmantoday

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UPCOMING EVENTS 


Upcoming Angelman Conference

The Angelman Syndrome Foundation Family Conference and Scientific Symposium July 11- 15 2017 at the Arizona Grand Resort and Spa.

Arizona Grand Resort and Spa Research Grant

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Rare Disease Day

FEBRUARY 28TH IS RARE DISEASE DAY Did you know?

• 1-10 People in the US are living with a rare disease.

• There are about 7000 rare disease classifications.

• 80% of all rare diseases have genetic origins.

• Approved treatments exist for only 5% of all rare diseases.

Health Top - Constipation  

Treating Constipation Easy tips for treating constipation. A common symptom of Angelman syndrome.

The Gut - Brain Connection A healthy gut is key to a healthy brain.

When you see constipation listed as a symptom of Angelman syndrome, do not lose hope that it cannot be treated. A diagnosis of Angelman syndrome does not necessarily mean one is destined to suffer with all of the symptoms often associated with the genetics.

Many individuals that follow these easy steps are able to have healthy digestion without medications, enemas or natural laxatives.

Here is what you can do:

- Eat a whole food, high-fiber diet.

- Add 2 tablespoons of ground flax seeds to your daily diet.

- Eat healthy fats like avocado, olives, olive

oil, grass fed butter, coconut oil and try MCT oil.

- Supplement with Magnesium, Vitamin C and Probiotics.

- Drink 7-8 glasses of water a day.

- Exercise or get the body moving as much as possible.

Do not confuse whole food with whole grain. Whole foods mean fruits and vegetables fresh or frozen. Unprocessed and not in a box from the center isles in the grocery store.

What to strictly avoid when constipated: Dairy, sugar, gluten, breads, pastas, and all processed foods.

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Keto Power Comic  

Coming Soon! o t e K

r e w Po

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.

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Available in Mint Chocolate and Olive Oil

Click here to order online

 

Helpful Products To improve the daily lives of those with Angelman Syndrome.

https://www.amazon.com/dp/B00DBYBNEE? _encoding=UTF8&adid=0Y9MEZQ15H6GCNBX0SCA&camp=224849&creative=511289& linkCode=ur1&primeCampaignId=prime_assoc_ft&tag=wwwangelmanto-20 Support your favorite Angelman charity with the Amazon Smile program when shopping online.

Natural Vitality Natural Calm Calmful Sleep Magnesium Anti Stress Extra Sleep Support

EZPZ Happy Mat Placemat suctions to the table to reduce tipped bowls.

Kid Safe Calming Magnesium Oil with Roman Chamomile and Lavender Essential Oils. Blended with Aloe Vera so It Won't Burn or Itch. Easy Roll on Applicator.

Most durable iPad mini case for Angels

Eazy Hold Universal Adaptive Assist ANGELMAN TODAY | 10

Angelman Today Cover Contest

s r e n n Wi 2nd place

s r e n n Wi 3rd place

Keep Them Safe Free membership to special needs caregiver controlled registry.

Save 5%

on your first purchase using promo code: Angelman Today




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We Can’t Imagine This Without You!

2017 Walk Registration Is Open!

It’s More Than Just A Walk

Join the movement! The ASF National Walk stretches across the continent. Find your nearest Walk site by checking out our 2017 map and sign up today!

ALASKA

Your participation helps the ASF support families and fund research. CLICK HERE to register for the ASF’s 2017 Walk and contact Kitty Murphy at kmurphy@angelman.org with any questions.

Current locations New locations in 2017

www.Angelman.org

(800) 432-6435

Int’l (630) 978-4245

info@angelman.org

ASF FUNDED RESEARCH

ASF-Funded Research: Working Towards Effective Treatments and A Cure for AS Have you seen the two new ASF-funded research projects? Learn more about this groundbreaking, critical research below!

Dr. Eric Levine: Understanding how AS Neurons Perform in the Brain World-class researcher, Dr. Eric Levine and his lab at UConn are leading this outstanding research project.

Watch this video to learn how this important research will help us better understand how AS neurons perform in the brain.

Dr. Becky Burdine, a professor at Princeton University, calls the study “critical for helping us understand how Angelman syndrome affects neurons and for helping us develop therapeutics.”

Dr. Ype Elgersma: Understanding Ube3a Isoforms Outstanding and pioneering researcher, Dr. Ype Elgersma and his Erasmus MC lab in the Netherlands, are researching which Ube3a isoforms are important in AS brain development. Watch this video to learn more about his innovative research!

Dr. Art Beaudet, AS research pioneer and leader, discusses this research: “Dr. Elgersma’s work is very central to ALL efforts trying to develop a definitive treatment for Angelman syndrome.”

CLICK HERE for more information about ASF-funded research!

RESEARCH. TECHNOLOGY. WELLNESS.

EMPOWERING YOUR FUTURE

2017 ASF Family Conference and Research Symposium This is THE Angelman meeting you can’t afford to miss! Meet up with new friends and those you’ve only met through social media. Network with AS experts and researchers.

Learn the latest advancements in Angelman syndrome research, technology and communications, individual and whole-family wellness and SO MUCH MORE!!!

New and different from past Conferences, the 2017 ASF Family Conference will bring together your new ideas and suggestions while keeping a few of your favorites from past meetings. Phoenix or Bust! We’re looking forward to seeing you there!

Watch this video to hear the highlights of what to expect!

Stay-tuned for more details as the countdown to the July 12-15 ASF Family Conference continues!

See you in PHOENIX July 12-15, 2017! www.Angelman.org

(800) 432-6435

Int’l (630) 978-4245

info@angelman.org

OF SERVING YOU!

January 6, 1992, the Angelman Syndrome Foundation was born.

So much has happened in these past 25 years, all focusing around you, research and our mission: to advance the awareness and treatment of Angelman syndrome through education and information, research, advocacy and support for individuals with Angelman syndrome and their families.

The ASF is here to help your loved one with AS, you and your family.

Through research to find treatments and ultimately a cure for AS--we’re in this for YOU!

And this year, we are CELEBRATING with YOU! Stay tuned for many exciting opportunities to celebrate the past 25 years, but most importantly, we are here for you along your entire journey with AS. How do you see the future for your loved one with AS and the AS Community? TELL US! Send an email to info@angelman.org and tell us your vision for the AS Community.

25 YEAR S: R E S EAR C H. FAM I LI E S. YO U .

 

Get social with us a share your pics using #LifeWithAnAngel

 

Share with us how you and your family will celebrate and raise awareness for International Angelman Day. Tag us and we will share and retweet your posts to help you get the word out!

#LifeWithAnAngel

Don’t underestimate me. I know more than I say, think more than I speak & notice more than you realize.

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Making it easy for first responders to get vital information about the individual. Order online www.IfiNeedHelp.org

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CONTRIBUTORS

Editor in Chief Lizzie Sordia Assistant Editor Marilyn Kennedy Nutritionist Sybille Kraft Bellamy Additional Contributors

/AngelmanToday All Of The Angelman And Associated Foundations Angelman Syndrome Foundation AFSA -French Association of Angelman Syndrome Associacao Síndrome de Angelman Portugal

/AngelmanToday

/AngelmanToday Sponsors If i Need Help www.IfiNeedHelp.org KayserBetten Secure Sleep Systems www.KayserBettenUS.com

/AngelmanToday

Angelman Today

STAY CONNECTED ANGELMAN TODAY | 22

The History of Angelman Syndrome

Dr. Harry Angelman was an English physician who identified what is now known as Angelman Syndrome.

Dr. Angelman was born in Birkenhead, England. He was an enthusiast for the language and country of Italy.

He first observed three children who were unrelated but showed similar symptoms of severe intellectual delay, stiff, jerky gait, lack of speech, seizures, motor disorders and happy demeanors.

Then, while vacationing in Italy, he observed an oil painting called… A Boy with a Puppet by the renaissance artist Giovanni Francesco Caroto at the Castelvecchio museum in Verona.

Dr. Harry Angelman 1915 - 1996

Reminded of the children, Dr. Angelman published a paper in 1965 that described what he called “puppet children”. At this time, his paper was not immediately recognized as important.

It wasn’t until 1982, when Charles A. Williams and Jaime L. Frias of the department of Pediatrics, Division of Genetics, University of Florida College of Medicine, Gainesville submitted a paper to the American Journal of Medical Genetics reporting studies of six patients and comparing their data to those from previous reports – severe developmental delay, “puppet-like” gait, craniofacial abnormalities, and frequent episodes of laughter that it became clear the syndrome was more common than previously thought.

They proposed the name of this disorder be changed to Angelman Syndrome.

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Our Partners - International Angelman and Associated Foundations 


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