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The Secret of Mael: Cartoon about the difference

Le secret de Mael

Le secret de Maël : dessin animé sur la différence
The secret of Mael: cartoon about the difference

Click to view The Secret of Mael: Cartoon about the difference



Aromatherapy and Angels September – October 2014

By Shari Caspert, Mom of 17 year old Matthew

Aromatherapy: Back to School Essentials For your Special Needs Child, Teacher, Therapists, Aides & You

It’s September and it’s time to get organized. Time for our family to get ready to go back to school. IEP’s, backpacks, shoes, clothing, supplies and Essential Oils!

As parents of special needs children, we often separate our kids and families as “Special Needs” , however the start of school brings the same issues for everyone in our household. Our emotions, excitement & anxiety are heightened whether we are attending pre-school, elementary school, middle school, high school or college. We are all typical and have the same issues as everyone!

There are many ways to use Essential Oils:Angelman Back to School image1

Topically – Put on vita flex points on your feet, the back of the neck, skull sutures, add to bath water or put right on a specific body part.

Diffuse – allows the oils to stay suspended in the air to reduce bacteria & mold. It also freshens the air with naturally, rather than harmful air fresheners.

There are many types of Diffusers – Cool air diffusers, Bandana, Clothing Jewelry, USB ready diffuser , even a coffee filter. (Great options for carpool).

Ingest – Single oils may be used as dietary supplements and there are many supplements such as probiotics, enzymes, vitamins and more.

Let your child be an active participant. Let them smell and feel the essential oils before use and let them make a selection. You can take a photo of the product and put it on the iPad, even use their favorite as a reward system. This is great for independence, making choices, and sensory needs.

Here are some of our easy to use favorites:

Kidscents – Specially designed for younger children, features include: pre-diluted with Coconut oil, roller caps, great names and fun packaging.

The Reconnect Kit contains 4 essential oil blends. Reconnect – allows the mind to react positively and reconnect to surroundings. InTouch – calming, grounding, helps body integrate with environment SleepIze – relaxes and calms the body and mind GeneYus – helps with focus and ability to stay on task.

Angelman ReconnectAngelman Back to School 2










Ask me how:

Shari Caspert scaspert@gmail.com



Poems by Darren Humphries

“We treasure the short time we had with Elijah” – Darren Humphries (Father to Elijah)

Elijah Humphries

February 2004  – August 2007

As I sit and write, it is a few days after my son Elijah‘s 7th death Anniversary. Elijah was born in 2004 and was diagnosed with Angelman Syndrome (Deletion Positive) in April 2006. Elijah died in August 2007 as a result of brain damage caused by seizures.

It has been a challenge for me and my wife Julie and daughter Francesca to learn to live with the death of someone we loved so much.

We treasure the short time Elijah was able to share our life together as a family. We are thankful for his impact on our lives and also on the many people all around the world.

We rejoice now and celebrate his legacy as he continues to touch and inspire even more people across the face of the planet. Being his Dad I feel like I have picked up his mantle and I am compelled to continue to share Elijah, his life, our journey, and our hope.

Part of his legacy is that I continue to be connected and engaged with the a worldwide family of those whose lives have been impacted by Angelman Syndrome. I stay in communication with these people through a variety of different initiatives and avenues.

One enduring memory of Elijah was time spent with his Lolo (his grandfather on Julie’s side) and time we spent at a place not far from Christchurch called Akaroa. I remember the delight that he expressed when sitting on the beach and splashing in the waves. Whenever online I have seen countless pictures of other children on online doing the same thing.

When I saw the picture of Andrew Spence from Scotland on Facebook at the seaside engaging with the surf and the surf with him, it reminded me of Elijah and the sheer delight that I had witnessed first-hand on many occasions. As an artist I felt compelled to put into words, what I saw and knew was happening for him and his relationship with the sea.

At The Edge Of The Surf

Poem 1 - edge of the surf

A Boy Who’s Drawn To The Sea
poem 2 - Blank

I Could Sit Here For Hours
poem 3 - Blank-3

Editor’s Letter – September – October Edition 2014

Editor picSummer fun is done and I hope you all had a great time either vacationing or just being home with friends and family, enjoying the warm summer nights. It’s that time of year again. Time to get the kids back to school or begin a new homeschool regimen. This is the time I start to think about goals for my kids in the new school year and have meetings with teachers to ensure we are all on the same page and working together.

I also remain thoughtful of a favorite picture that accompanies a wise quote from Albert Einstein, it includes: a monkey, a penguin, an elephant, a fish in a bowl, a seal, and a dog. They are all lined up in front of an instructor behind a desk with the caption “For a fair selection everybody has to take the same exam: please climb that tree.”

The goals for my typical son, Braden, will be different than my youngest son, Nathan (AS del +); but for more than just a school education I try to be mindful of their individual talents or gifts when I write their goals. These talents may or may not be included in the curriculum or be able to be measured or scored. But we can tell by the smile it puts on their faces while they are in action or the lengthened attention span they have developed for that particular activity. These are the hints we get as parents to identifying their genius. It is a journey best traveled at their own pace.

Warm Wishes,
Lizzie Sordia
Editor – in – Chief

“Everybody is a genius. But if you judge a
fish by its ability to climb a tree, it will live
its whole life believing that it is stupid”
–Albert Einstein

Magnesium – A Simple Solution For Many Symptoms

warn-bath-with-epsom-saltMagnesium is one of the most important and vastly underestimated minerals.

It is crucially important for optimum health and supporting some o f the following functions:

-Activating muscles and nerves

-A precursor for neurotransmitters like serotonin

-Activating ATP, which supports the body’s energy and mitochondrial function.

Many people may be deficient and not even know it. Some symptoms of deficiency are:

-Muscle contractions and cramps or twitches

-Numbness and tingling

-Personality changes

-Abnormal heart rhythms

-Improper formation of bones and teeth







The Calcium and Magnesium Balance is Vital

Calcium must be balanced with magnesium and adequate levels of magnesium are essential for the absorption and metabolism of calcium.

The biggest problem is that testing serum magnesium levels is the least sensitive way to detect total body magnesium levels.

What you can do about it

Add Magnesium rich foods to your diet including:

Nuts- almonds, cashews, brazil nuts, walnuts, pecans, pumpkin seeds

Veggies- collard greens, parsley, dandelion greens, raw spinach, kale

dates, figs, shrimp, avocado, beans, garlic, and bananas.

Another simple and effective way to get magnesium into the body is by taking an Epsom salt bath.

It is part of many familie’s nightly routine. It calms the brain and the body. Here is what a few fellow Angel families had to say:

“We use it at bath time to help calm down and get ready for bed, but we use it also for bad days when Toby (4 del+) is stiff. On the back of the bag there is a “recipe” for Epsom salt lotion that you use topically we use this for his belly cramps and constipation” – Erin Condon Bates

“After the third day of giving nightly epsom salt baths, Nathan started sleeping through the entire night for the first time in his life. We have been doing them ever since, going on over three years now.” – Lizzie Sordia

When a 6 lb bag is around $5 at your local pharmacy, it is a great solution all around. bathtime


Sources and References:




The Foundation for Angelman Syndrome Therapeutics is excited to announce the 2014 Global Summit on Angelman Syndrome


This two-day event includes a science seminar on Friday, December 5, 2014, an educational seminar Saturday afternoon, December 6, 2014 and a star-studded, fundraising Gala on Saturday evening, December 6, 2014. The event takes place at the Chicago Hyatt Regency located at 151 East Upper Wacker Drive, Chicago, Illinois, 60601. Admittance to the Science and Educational Seminars is complimentary. Tickets to the Gala are $150.00 per person. The 2014 FAST Gala is a formal, twenty-one and older event. FAST has secured a discounted room rate of $114.00 per night at the Hyatt Regency; rate is valid until November 14, 2014.

To download the Corporate Sponsorship form, click here.
To purchase tickets or tables to the event, click here.
To purchase Corporate Sponsorship of the event, click here.
To book hotel room(s), click here.
To download an Auction/Raffle Donation Request form, click here.

The full event schedule is as follows:

Friday, December 5, 2014
10:00 AM to 12:00 Noon

Seizure Seminar – Featured Speakers:

Dr. Anne Anderson, Associate Professor, Departments of Pediatrics, Neurology and Neurosciences, Baylor College of Medicine and Medical Director, Epilepsy Monitoring Unit, Texas Children’s Hospital.

Dr. Douglas Nordli Jr., Ann & Robert H. Lurie Children’s Hospital of Chicago, Division Head, Epilepsy Center; Attending Physician, Neurology and Epilepsy Center; Lorna S. and James P. Langdon Chair of Pediatric Epilepsy; Fellowship Director for the Epilepsy Program, Northwestern McGaw Medical Center; Professor of Pediatrics and Neurology, Northwestern University Feinberg School of Medicine.

Topics will include: dietary treatment options for epilepsy, cannabidiol (CBD) in the treatment of epilepsy, non-convulsive status epilepticus, best practices for treatment of seizures in Angelman Syndrome.

12:00 Noon – 1:00 PM – Complimentary Lunch Served

1:00 PM – 5:00 PM – Science Seminar – Featured Speakers:

Dr. Edwin Weeber, Professor, Molecular Pharmacology & Physiology, University of South Florida. Chief Scientific Officer, USF Health Byrd Alzheimer’s Institute, University of South Florida. Director, Murine Neurobehavioral Testing Facility, University of South Florida. Primary Investigator, FAST Integrative Research Environment (FIRE) Initiative.

Dr. Anne Anderson, Principal Investigator, Gordon and Mary Cain Pediatric Neurology Research Foundation Laboratories, Texas Children’s Hospital. Associate Professor, Departments of Pediatrics, Neurology and Neurosciences, Baylor College of Medicine. Co-Investigator, FAST Integrative Research Environment (FIRE) Initiative.

Dr. David Segal, Associate Director of Genomics, UC Davis Genome Center. Associate Professor, Department of Biochemistry and Molecular Medicine, School of Medicine, M.I.N.D. Institute. Associate Professor, Department of Pharmacology, School of Medicine. Investigator, FAST Integrative Research Environment (FIRE) Initiative.

Dr. Scott Dindot, Assistant Professor, Department of Veterinary Pathobiology, Texas A&M University. Investigator, FAST Integrative Research Environment (FIRE) Initiative.

Dr. Sarah Black, Postdoctoral Research Associate, Texas A&M University.

Topics will include: Drug discovery, Artificial Transcription Factors, novel therapeutics in the treatment of Angelman Syndrome and much, much more.

5:30 PM – 6:30 PM – New Animal Models in Angelman Syndrome – Featured Speakers:
Dr. Jorge Piedrahita, Professor of Genomics, North Carolina State University. Director, North Carolina State University Center for Comparative Medicine and Translational Research.

Dr. Scott Dindot, Assistant Professor, Department of Veterinary Pathobiology, Texas A&M University. Investigator, FAST Integrative Research Environment (FIRE) Initiative

Dr. David Segal, Associate Director of Genomics, UC Davis Genome Center.

Saturday, December 6, 2014
10:00 AM – 11:30AM – Meet the Scientists – Open Q&A on AS Research

1:00 PM – 4:00 PM – Literacy in Angelman Syndrome Workshop – Featured Speakers:

Erin Sheldon, M.Ed. Literacy and Assistive Technology Specialist

Dr. Caroline Musselwhite, CCC-SLP, Literacy and Assistive Technology Specialist

Dr. Gretchen Hanser, OT, Literacy and Assistive Technology Specialist Focus: An overview session will demonstrate practices used successfully to develop literacy and communication skills in a range of students with Angelman Syndrome. Follow-up workshops for attendees will then provide hands on

Focus: An overview session will demonstrate practices used successfully to develop literacy and communication skills in a range of students with Angelman Syndrome. Follow-up workshops for attendees will then provide hands on
instruction in how we can engage our students in a variety of literacy activities and technologies. Attendees should bring iDevices if they have one, but this is not required.

6:00 PM – Midnight – 2014 FAST Gala – Grand Ballroom – Featured Guests: Colin Farrell, critically acclaimed actor and Golden Globe winner. Films include Phone Booth, In Bruges, Crazy Heart, Horrible Bosses, and Saving Mr. Banks. Jai Courtney, critically acclaimed actor. Films include Jack Reacher, A Good Day to Die Hard, Divergent and soon to be released Unbroken. Retta, actress and comedienne best known for her role on NBC’s Parks and Recreation. Josh Peck, actor known for his role in Nickelodeon’s Drake & Josh. Films include Ice Age and Red Dawn.

Tickets to the 2014 FAST Gala include a cocktail hour from 6:00 PM – 7:00 PM, a formal three-course dinner from 7:00 PM – 8:30 PM, celebrity guest speakers, keynote speaker, silent auction and raffle and entertainment provided by The Shannon Rovers and 7th Heaven Band.

**The Science Seminar schedule is subject to changes. FAST will announce any changes made, but please check back here prior to the event****