Angelman Today

INCLUDING RESOURCES RESEARCH INSPIRATION

digital magazine

Angelman Research By Ed Weeber PhD

Magnesium ndash The Relaxing Mineral

10 Ways to Prepare for Back to School

Summer 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

Itrsquos 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

ldquoFor a fair selection everybody has to take the same exam please climb that treerdquo

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

WWWANGELMANTODAYCOM September October 2014

EDITORrsquoS LETTER

ldquoEverybody 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 stupidrdquo

ndashAlbert Einstein

Back to School Tipshelliphelliphelliphelliphelliphelliphelliphellip4 Back to School Picshelliphelliphelliphelliphelliphelliphelliphelliphellip5 10 Ways to Prepare for Back to Schoolhelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip8 Angels in Action - Taylorhelliphelliphelliphelliphelliphellip10 Magnesium ndash The Relaxing Mineralhellip11 Angels in Action - Joshua age 10helliphellip20 Poems by Darren Humphries in Memory of Elijahhelliphelliphelliphelliphelliphelliphelliphelliphellip22 Aromatherapy and Angels By Shari Casperthelliphelliphelliphelliphelliphelliphellip11 The History of Angelman Syndrome (Spanish)helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip26 Mompreneur Marketplacehelliphelliphelliphelliphellip hellip28 History of AShelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip29 Parent Recommended Bookshelliphelliphelliphellip31 Angelman Research By Ed Weeber PhDhelliphelliphelliphelliphelliphellip32-33 Classifiedshelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip34

Whatrsquos inside

Angelman and Associated

Foundations The Angelman Syndrome Foundation Conferencehelliphelliphelliphellip6 Angelman Syndrome Francehellip15 AS Meeting ndash Paris 2014 Foundation for Angelman Syndrome Therapeuticshelliphelliphelliphelliphellip18 Associacion Francaise du Syndrome drsquoAngelmanhelliphelliphelliphelliphellip19

32

29

08

28

22

Cover

Joshua Hamrick age

10 from Texas

Photo provided by

Yvonne Hamrick

19

WWWANGELMANTODAYCOM September October 2014

PharmaNac 900mg (32

Effervescent Tabs) NAC

Brane BioAdvantex

-Certified European GMP

grade NAC

-Effective way to help boost

glutathione levels

Glutathione is your bodyrsquos

most powerful antioxidant and

detoxifiers is able to help

strengthen your immune

system and respiratory support

Stainless steel

ECOlunchbox

Three-in-One

(Bento Style

Lunchbox

AllerMates Allergy

Wristband ndash ldquoP

Nuttyrdquo Peanuts

Food allergies are on the rise and they can develop

with out warning It is a good idea to have your

child tested every few years Allergies can range in

severity from a skin reaction to life threatening

anaphylaxis

Both skin and blood tests are recommended

Although tests can be inaccurate there are sign you

can check for

-Redness or rash around mouth after meals

-Eczema

-Constipation

-Stomach pain

-itchy tongue

Precautions can be taken by notifying school staff

of food allergy Provide school with Epi-Pen or

other emergency medication for Anaphylaxis

reaction

AllerMates Multi

Charm Package

Multi Wristband plus

six Allergy Charms

AllerMates 12425

Epi and Auvi Case

with Wristband and

24 Stickers

PODD with

Dynavox Compass

WWWANGELMANTODAYCOM September October 2014

Summer 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

Itrsquos 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

ldquoFor a fair selection everybody has to take the same exam please climb that treerdquo

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

WWWANGELMANTODAYCOM September October 2014

EDITORrsquoS LETTER

ldquoEverybody 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 stupidrdquo

ndashAlbert Einstein

Back to School Tipshelliphelliphelliphelliphelliphelliphelliphellip4 Back to School Picshelliphelliphelliphelliphelliphelliphelliphelliphellip5 10 Ways to Prepare for Back to Schoolhelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip8 Angels in Action - Taylorhelliphelliphelliphelliphelliphellip10 Magnesium ndash The Relaxing Mineralhellip11 Angels in Action - Joshua age 10helliphellip20 Poems by Darren Humphries in Memory of Elijahhelliphelliphelliphelliphelliphelliphelliphelliphellip22 Aromatherapy and Angels By Shari Casperthelliphelliphelliphelliphelliphelliphellip11 The History of Angelman Syndrome (Spanish)helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip26 Mompreneur Marketplacehelliphelliphelliphelliphellip hellip28 History of AShelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip29 Parent Recommended Bookshelliphelliphelliphellip31 Angelman Research By Ed Weeber PhDhelliphelliphelliphelliphelliphellip32-33 Classifiedshelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip34

Whatrsquos inside

Angelman and Associated

Foundations The Angelman Syndrome Foundation Conferencehelliphelliphelliphellip6 Angelman Syndrome Francehellip15 AS Meeting ndash Paris 2014 Foundation for Angelman Syndrome Therapeuticshelliphelliphelliphelliphellip18 Associacion Francaise du Syndrome drsquoAngelmanhelliphelliphelliphelliphellip19

32

29

08

28

22

Cover

Joshua Hamrick age

10 from Texas

Photo provided by

Yvonne Hamrick

19

WWWANGELMANTODAYCOM September October 2014

PharmaNac 900mg (32

Effervescent Tabs) NAC

Brane BioAdvantex

-Certified European GMP

grade NAC

-Effective way to help boost

glutathione levels

Glutathione is your bodyrsquos

most powerful antioxidant and

detoxifiers is able to help

strengthen your immune

system and respiratory support

Stainless steel

ECOlunchbox

Three-in-One

(Bento Style

Lunchbox

AllerMates Allergy

Wristband ndash ldquoP

Nuttyrdquo Peanuts

Food allergies are on the rise and they can develop

with out warning It is a good idea to have your

child tested every few years Allergies can range in

severity from a skin reaction to life threatening

anaphylaxis

Both skin and blood tests are recommended

Although tests can be inaccurate there are sign you

can check for

-Redness or rash around mouth after meals

-Eczema

-Constipation

-Stomach pain

-itchy tongue

Precautions can be taken by notifying school staff

of food allergy Provide school with Epi-Pen or

other emergency medication for Anaphylaxis

reaction

AllerMates Multi

Charm Package

Multi Wristband plus

six Allergy Charms

AllerMates 12425

Epi and Auvi Case

with Wristband and

24 Stickers

PODD with

Dynavox Compass

WWWANGELMANTODAYCOM September October 2014

Back to School Tipshelliphelliphelliphelliphelliphelliphelliphellip4 Back to School Picshelliphelliphelliphelliphelliphelliphelliphelliphellip5 10 Ways to Prepare for Back to Schoolhelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip8 Angels in Action - Taylorhelliphelliphelliphelliphelliphellip10 Magnesium ndash The Relaxing Mineralhellip11 Angels in Action - Joshua age 10helliphellip20 Poems by Darren Humphries in Memory of Elijahhelliphelliphelliphelliphelliphelliphelliphelliphellip22 Aromatherapy and Angels By Shari Casperthelliphelliphelliphelliphelliphelliphellip11 The History of Angelman Syndrome (Spanish)helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip26 Mompreneur Marketplacehelliphelliphelliphelliphellip hellip28 History of AShelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip29 Parent Recommended Bookshelliphelliphelliphellip31 Angelman Research By Ed Weeber PhDhelliphelliphelliphelliphelliphellip32-33 Classifiedshelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip34

Whatrsquos inside

Angelman and Associated

Foundations The Angelman Syndrome Foundation Conferencehelliphelliphelliphellip6 Angelman Syndrome Francehellip15 AS Meeting ndash Paris 2014 Foundation for Angelman Syndrome Therapeuticshelliphelliphelliphelliphellip18 Associacion Francaise du Syndrome drsquoAngelmanhelliphelliphelliphelliphellip19

32

29

08

28

22

Cover

Joshua Hamrick age

10 from Texas

Photo provided by

Yvonne Hamrick

19

WWWANGELMANTODAYCOM September October 2014

PharmaNac 900mg (32

Effervescent Tabs) NAC

Brane BioAdvantex

-Certified European GMP

grade NAC

-Effective way to help boost

glutathione levels

Glutathione is your bodyrsquos

most powerful antioxidant and

detoxifiers is able to help

strengthen your immune

system and respiratory support

Stainless steel

ECOlunchbox

Three-in-One

(Bento Style

Lunchbox

AllerMates Allergy

Wristband ndash ldquoP

Nuttyrdquo Peanuts

Food allergies are on the rise and they can develop

with out warning It is a good idea to have your

child tested every few years Allergies can range in

severity from a skin reaction to life threatening

anaphylaxis

Both skin and blood tests are recommended

Although tests can be inaccurate there are sign you

can check for

-Redness or rash around mouth after meals

-Eczema

-Constipation

-Stomach pain

-itchy tongue

Precautions can be taken by notifying school staff

of food allergy Provide school with Epi-Pen or

other emergency medication for Anaphylaxis

reaction

AllerMates Multi

Charm Package

Multi Wristband plus

six Allergy Charms

AllerMates 12425

Epi and Auvi Case

with Wristband and

24 Stickers

PODD with

Dynavox Compass

WWWANGELMANTODAYCOM September October 2014

PharmaNac 900mg (32

Effervescent Tabs) NAC

Brane BioAdvantex

-Certified European GMP

grade NAC

-Effective way to help boost

glutathione levels

Glutathione is your bodyrsquos

most powerful antioxidant and

detoxifiers is able to help

strengthen your immune

system and respiratory support

Stainless steel

ECOlunchbox

Three-in-One

(Bento Style

Lunchbox

AllerMates Allergy

Wristband ndash ldquoP

Nuttyrdquo Peanuts

Food allergies are on the rise and they can develop

with out warning It is a good idea to have your

child tested every few years Allergies can range in

severity from a skin reaction to life threatening

anaphylaxis

Both skin and blood tests are recommended

Although tests can be inaccurate there are sign you

can check for

-Redness or rash around mouth after meals

-Eczema

-Constipation

-Stomach pain

-itchy tongue

Precautions can be taken by notifying school staff

of food allergy Provide school with Epi-Pen or

other emergency medication for Anaphylaxis

reaction

AllerMates Multi

Charm Package

Multi Wristband plus

six Allergy Charms

AllerMates 12425

Epi and Auvi Case

with Wristband and

24 Stickers

PODD with

Dynavox Compass

WWWANGELMANTODAYCOM September October 2014

WWWANGELMANTODAYCOM September October 2014

Itrsquos that time of year again It is hard to

believe that summer is already winding

down and ldquoBack to Schoolrdquo time is

upon us In order to help you and your

child with Angelman Syndrome have

the best year possible Irsquove assembled a

list of 10 ways to prepare for back to

school

1 Create a one-page profile of your child to

share with teachers and other school staff I like

to think of what a child would normally tell his

or her new teachers during the first days of

school and include as much of that information

as possible on these profiles Instead of listing

strengths and needs include what you admire

about your child whatrsquos important to your child

and how best to support him or her Use clip art

to include your childrsquos favorite things and insert

your favorite pictures to personalize this and

showcase your childrsquos personality You can find

more information on the one-page profile at

httpwwwhelensandersonassociatescoukreadi

ng-roomhowperson-centred-thinkingone-page-

profilesaspx

2 Create a gesture and communication

dictionary to share with your childrsquos teachers

and school staff Many children with AS have

developed their own systems of communicating

and it can take some time for new teachers to

learn what each gesture and communication

effort means Provide a simple list of your

childrsquos gesturescommunication behaviors

including what each behavior means and how

the receiver should respond Make sure to

include behaviors specific to mealtime toileting

and health issues The folks at Praactical AAC

have a fabulous template already created that

you can download and fill in for your child

httppraacticalaacorgstrategystrategy-of-the-

month-back-to-school-with-aac

10 Ways to Prepare for Back to School

3 Donrsquot forget the bus drivers and school

nurse There are some items that you will

want to share with these folks in addition to

the other resources that you have created

Nurses will need to know about your childrsquos

medications special diets seizure issues and

any other medical considerations that might

come up during the school day Make sure to

talk to the nurse about the best ways to calm

or soothe your child if they arenrsquot feeling

well how your child prefers to take

medication and any routines that might help

when health issues arise Talk with bus

drivers about how to use your childrsquos AAC

on the bus to engage them in conversation

during the ride There is nothing worse than

a long bus ride with nobody talking to you or

interacting so work with the bus driver bus

assistant and school team to develop a plan

for social engagement on the bus

4 Establish a communication plan with

your childrsquos teacher One of the easiest ways

to ensure daily communication is the old-

fashioned black and white composition book

which goes in your childrsquos backpack each

day You write about what happens at home

and the teachers write about what happens in

school One of my clients was lucky enough

to work with a teacher who sent a daily email

listing what the children did each day and

included a link to a Shutterfly account where

she posted pictures (continued on next page)

By Jodi M Duke EdD

Special Education Advocate

wwwjodidukeadvocacycom

Join Us in ChiCago For FoUr Days oF hope

July 15 ndash 18 2015Chicago Illinois

save the dates hope inspired isnrsquot just the theme of the 2015 asF Biennial Conferencemdashitrsquos a way of life for all families touched by angelman syndrome Join us for hope inspired by research knowledge community awareness and support

The conference brings families together to share experiences build camaraderie and learn the latest information about as from the worldrsquos leading researchers healthcare professionals educators and resource professionals

at the Conference wersquoll share news of the most recent research and clinical trials therapeutics life with as developmental techniques day-to-day best practices and beneficial resources you will meet and interact with other families who are learning about and dealing with the same issues and behaviors you face every day including families who have traveled this road before you and can share their experiences and advice you will go home with new ideas knowledge enthusiasm and friends to support you and your loved one with as on your journey

wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg

wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg

bull Brookfield Zoo

bull great america

bull Woodfield Mall

bull Concerts at Midwest amphitheater

bull Fashion outlets of Chicago

bull Key Lime Cove indoor water park and family resort

bull Chicago Childrenrsquos Museum

bull art institute of Chicago

bull explore and Much More childrenrsquos play space

bull Kid City childrenrsquos play space

bull Wrigley Field historic ballpark

bull Museum of science and industry

bull Michigan avenue city thoroughfare with Magnificent Mile

bull 360 Chicago observation deck

bull Buckingham Fountain landmark fountain

bull garfield park Conservatory

bull Lincoln park Zoo

Chicago is full of fun family attractions you can visit during your stay While attending hope inspired find time for your family to enjoy all that this destination has to offer

save the dates and join hundreds of families sharing the same journey as you for the 2015 asF Biennial Conference

Therersquos no pLaCe LiKe ChiCago in The sUMMer

Whether you opt for low or high tech the

important thing is that you have an established

way to communicate on a daily basis

5 Start preparing now Gradually move

bedtimes and wakeup times earlier so that the

morning routine will be in place by the time

school starts (this is as much for the parents as

it is for your children) Take your child to the

school playground for a picnic and playtime

Invite other children from your childrsquos class if

you know them Take your child shopping for

school supplieshellipand let them have that zany

leopard print notebook that they choose

6 Create a transition book that will remind

your child of what to expect at school This is

especially important for children that are

starting a new school but can also help ease

anxiety and remind children of the routines I

like to create these in PowerPoint and then

have a peer record the narration so that

students can view them on a laptop iPad or

other device or print them out in a more

traditional book format I have also created a

few of these in the app Kid in Story that allows

you to include the childrsquos picture in the story

and easily create voice recording Regardless of

the format you want to include photos of the

childrsquos school including classroom gym

specials cafeteria playground and any other

areas that will be visited daily

7 Introduce yourself to all service providers

and encourage them to contact you as needed

A small plate of treats with a little note goes a

long way towards establishing a positive

relationship

8 Request an IEP meeting in mid-October to

review progress Did you know that you can

request an IEP meeting anytime I like to give

schools about 6 weeks to get to know a student

and then have a meeting to discuss how things

are going This is another wonderful

opportunity to take a look at the IEP goals

accommodations and other supports that are in

place and decide if any changes need to be

made

9 Become a part of the school community

Check out the schoolrsquos website for information

on volunteering joining the PTA and any

school events that are coming up Most schools

organize some type of family activity in the

fall and it is a great way to meet other parents

and begin to feel like you belong I always

recommend that parents ask about volunteering

as well if time permits It is a wonderful way to

get to know faculty and staff and see how your

child is doing during the school day

10 Do your best to relax and enjoy the

remaining days of summer Our children can

sense when we are stressed or anxious so one

of the best ways to ease their transition back to

school is to try to control our own emotions So

sit back try to relax and take a deep

breathhellipitrsquos going to be a great year

WWWANGELMANTODAYCOM September October 2014

ASK DR THIBERT

Does your Angel have seizures

Are you interested in starting the LGIT but have questions

Here is your chance to get those questions answered In the next edition of Angelman Today Dr Thibert will

answer your questions about the Low Glycemic Index Treatment

There are a few ways you can participate Email your question to contactangelmantodaycom

Write on our Facebook page or

Tag angelmantoday on Twitter AskdrT

Pictures provided by Julie Rice Mom to Taylor age 3 del +

Angels in Action Celebrating the Abilities of our Angels

Magnesium - A Simple Solution For Many Symptoms

Magnesium is one of the most

important and vastly

underestimated minerals

It is crucially important for optimum health and

supporting some of the following functions

-Activating muscles and nerves

-A precursor for neurotransmitters like serotonin

-Activating ATP which supports the bodyrsquos energy

and mitochondrial function

-Proper formation of teeth and bones

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

-Insomnia

-Irritability

-Constipation

-Headaches

-Reflux

-Seizures

The Calcium and Magnesium Balance is Vital

Calcium and magnesium must be in balance with

each other Adequate levels of magnesium are

essential for the absorption and metabolism of

calcium One consideration for gauging

magnesium levels is by testing however testing

serum magnesium levels is the least accurate 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

Bananas

Another simple and effective way to get

magnesium into the body is by taking an Epsom

salt bath It is part of many familyrsquos nightly

routine It calms the brain and the body Here is

what one of our fellow Angelman families had to

say

ldquoWe 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 constipationrdquo ndash Erin Condon

Bates

When a 6 lb bag is around $5 at your local

pharmacy it is a great solution all around

WWWANGELMANTODAYCOM September October 2014

wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg

The Angelman Syndrome Foundation is here to help families during every step of their journey with AS offering guidance resources and support for day-to-day challenges and experiences with AS

Take advantage of these FREE ASF resources at your fingertips

Introducing the ASF Family Resource TeamTo assist the growing number of families needing support we assembled the ASF Family Resource Team a group of experts in their respective fields that are helping families handle a variety of needs Each member of the ASF Family Resource Team has a family member with AS so each is personally familiar with AS and has experience in overcoming challenges faced by families and individuals with AS and in improving the quality of life for all involved Click here to read more about the ASF Family Resource Team membersrsquo families and areas of expertise and to connect with them today

ASF Family Resource Team MembersMichelle HarveyIEP Issues IEP Bank Educational Issues Advocacy

Lizzie SordiaGeneral Resources (Supplies Durable Medical Goods Products Helpful Daily Living Products and Services)

Dr Eric WrightResources and Services specific to State Waivers Government Assistance Insurance and Advocacy on behalf of Individuals with AS

angelmansyndromefoundation

EDUCATIONAL WEBINARS

Have you attended the ASF Educational Webinars yetMore than 2500 have participated in the ASF Educational Webinar Series which helps families and caregivers stay up-to-date with a wide range of important topics related to AS including research updates clinical developments tips for everyday living and managing symptoms and many more Attendees have the ability to ask questions and interact with the speakers who are experts in their respective field

Click here to view past ASF Educational Webinars on the ASFrsquos YouTube Channel

Mark Your CalendarsThursday August 28 330pm CST Dr Eric Wright discusses government benefits

Tuesday September 9 200pm CST Dr Ron Thibert and Anna Larson discuss AS in adulthood

angelmansyndromefoundation

FAMILY RESOURCE TEAM

Take advantage of these FREE ASF resources at your fingertips

ASF Commits $1 Million for AS ResearchOn the heels of the ASF National Walk which to date has raised nearly $12 million to fund AS research and family support services the ASF announced the 2014 call for research proposals committing $1 million in support of AS research for the fourth consecutive time Highest priority will be given to projects that bring us closer to clinical trial for treatments of AS It is an exciting time for AS research

angelmansyndromefoundation

FUNDED RESEARCH

angelmansyndromefoundation

BEHAVIORS INFORMATIONAL SERIES

Angelman Syndrome Behaviors Informational SeriesThe Angelman Syndrome Behaviors Informational Series helps you and everyone who cares for and works with your loved one with AS better understand the complex and challenging behaviors often associated with AS A variety of social

psychological environmental medical and communication factors affect behavior By better understanding how these factors affect each individual with AS families and caregivers are better prepared to create an action plan to help modify challenging or aggressive behavior Click here to access one of the five available modules

Donrsquot forget the ASF IEP Bank as you embark on this school yearAre you often stuck when it comes to solid appropriate and challenging goals for your childrsquos Individual Education Plan (IEP) The ASF IEP Bank is an interactive tool to help you and your educational team develop appropriate goals

for your child You can search by category (academic behavioral physical etc) implementer (parent teacher speech language pathologist) or a particular keyword Find goals others have used and change or customize them for your child Click here for more about the ASF IEP Bank

angelmansyndromefoundation

INDIVIDUAL EDUCATION PLAN BANK(IEP BANK)

wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg

Four Days Filled With Hope ndash 2015 ASF Biennial ConferenceThe ASF Biennial Conference is the largest gathering of AS families individuals researchers medical experts and resource professionals of its kind Save the date for July 15-18 2015 in Chicagomdashit will be one of the most fulfilling experiences along your journey with AS At the Conference you will learn the latest information about

bull Researchandclinicaltrials

bull Therapeutics

bull LifewithAS

bull Developmentaltechniques

bull Day-to-daybestpractices

bull Beneficialresources

bull hellipandsomuchmore

Network with experienced AS families about the many life issues we face every day Take with you new ideas knowledge enthusiasm and friends to support you and

your loved one with AS Be inspired by Research Knowledge Community Awareness and Support at the 2015 ASF Biennial Conferencemdashand inspire others who are sharing the same journey as you

The Oakland Arsquos 25th Anniversary of their World Series Championship in 1989 was celebrated in July with several days of events all of which raised funds to support the AS community Due to overwhelming support from the Bay Area community the Oakland Arsquos donated $40000 to the ASF THANK YOU to the Oakland Arsquos and Dave ldquoHendurdquo Henderson former player for the Oakland Arsquos who led the Arsquos to their World Series win and whose son has AS for helping bring these dollars into the AS community

Thank you Oakland Arsquos

Caleb Cardenas had a great time at the Oakland Arsquos game and loved meeting pitcher Ryan Cook

Did you know there are several online shopping tools that generate donations to support the AS community that donrsquot cost you a dime iGive GoodSearch GoodShop and Amazon Smile all donate a portion of your online purchases to the ASF Click here to support the AS community by simply doing what you already do

In 2012 the following four European

associations Nina Foundation

(Netherlands) Orsa (Italy) AVO (Austria)

and AFSA (France) joined to organize an

international meeting bringing together

researchers involved into Angelman

Syndrome (AS) The first meeting in 2012

in Rotterdam (Netherlands) was a huge

success The 2013 edition took place in

Rome (Italy) Paris (France) will host this

year organized by AFSA on 17 October

2014 It will be followed by the French

associationrsquos national conference

The international meeting is open to

researchers and clinicians involved in

neuroscience gene therapy

neurodevelopmental disorders particularly

in Angelman Syndrome It is also open to

officials of European and international

organizations created around Angelman

Syndrome

The aim of the international meeting is to

encourage researchers to share their

experience and knowledge about AS For

this reason speakers present their

scientific projects to one another

As the Rotterdam and Rome conferences

have shown direct exchanges definitely

increase scientific research on Angelman

Syndrome which is supported only by

associations foundations or fundraising

Every two years AFSA organizes its

traditional two-day national meeting This

is a special opportunity for all French

families affected by Angelman Syndrome

to meet and share their experiences and

improve their knowledge Newly

diagnosed families seeking answers and

comfort are particularly welcome

Medical and paramedical professionals

(physicians geneticists psychomotors

physiotherapists researchers etc) take

part in the national meeting and share

with parents all the progress and

improvements that they are aware of

This year AFSA is proud to combine

these two major events the international

meeting will be followed by the French

national meeting (18 and 19 October

2014)

More information can be found on

wwwangelman-afsaorg

AFSArsquos fundraising page for the

international meeting

httpwwwalvarumcomcolloque-

angelman2014

3rd Angelman Syndrome International Meeting 17 October 2014 ndash Paris

WWWANGELMANTODAYCOM September October 2014

helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip

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 $15000 per

person The 2014 FAST Gala is a formal twenty-one

and older event FAST has secured a discounted room

rate of $11400 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 AuctionRaffle Donation Request

form click here

The full event schedule is as follows

Friday December 5 2014

1000 AM to 1200 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 Childrens Hospital

Dr Douglas Nordli Jr Ann amp Robert H Lurie

Childrens 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

1200 Noon - 100 PM - Complimentary Lunch

Served

100 PM - 500 PM - Science Seminar - Featured

Speakers

WWWANGELMANTODAYCOM September October 2014

Dr Edwin Weeber Professor Molecular

Pharmacology amp Physiology University of South

Florida Chief Scientific Officer USF Health Byrd

Alzheimers 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 Childrens 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 MIND 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 AampM University

Investigator FAST Integrative Research Environment

(FIRE) Initiative

Dr Sarah Black Postdoctoral Research Associate

Texas AampM University

Topics will include Drug discovery Artificial

Transcription Factors novel therapeutics in the

treatment of Angelman Syndrome and much much

more

530 PM - 630 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 AampM University

Investigator FAST Integrative Research Environment

(FIRE) Initiative

Dr David Segal Associate Director of Genomics UC

Davis Genome Center

Saturday December 6 2014

1000 AM - 1130AM - Meet the Scientists - Open

QampA on AS Research

100 PM - 400 PM - Literacy in Angelman

Syndrome Workshop - Featured Speakers

Erin Sheldon MEd 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

600 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 NBCs Parks

and Recreation Josh Peck actor known for his role

in Nickelodeonrsquos Drake amp Josh Films include Ice

Age and Red Dawn

Tickets to the 2014 FAST Gala include a cocktail

hour from 600 PM - 700 PM a formal three-course

dinner from 700 PM - 830 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

Angels in Action Celebrating the Abilities

of our Angels By Yvonne Hamrick Mom to Joshua age 10

Joshua is an artist

He LOVES to paint Our family is so proud of him

for pursuing his passions and we want to share

that dream with everyone

Joshua enjoys painting for others but mostly for

himself He has been an artist all of his life and he

knew it before anyone else did

We are so glad that we gave him that first

opportunity to paint Not only are Joshuas

paintings a means of expressing himself but its

also a great organizing tool for his body The

squishy paint between his fingers and sometimes

his toes brings him joy

Joshua often struggles to grasp things but not so

much when hes using a paint brush or another of

his artisan tools he likes to use

WWWANGELMANTODAYCOM September October 2014

As I sit and write it is a few days after my

son Elijahlsquos 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 Julies

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

Elijah Humphries February 2004 ndash August 2007

WWWANGELMANTODAYCOM September October 2014

ldquoWe treasure the

short time we

had with Elijahrdquo ndash Darren Humphries

(Father to Elijah)

At The Edge Of

The Surf

A Boy

Whorsquos

Drawn To

The Sea

I Could Sit Here

For Hours

By Darren Humphries

Itrsquos September and itrsquos time to get

organized Time for our family to get

ready to go back to school IEPrsquos

backpacks shoes clothing supplies

and Essential Oils

As parents of special needs children

we often separate our kids and

families as ldquoSpecial Needsrdquo

however the start of school brings

the same issues for everyone in our

household Our emotions excitement

amp anxiety are heightened whether we

are attending pre-school elementary

school middle school high school or

college We are all typical and have 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

Ask me how

Shari Caspert scaspertgmailcom

wwwyoungliving4specialneedscom

wwwspecialneedsmomsnet

Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew

Aromatherapy Back to School Essentials For your Special Needs Child Teacher Therapists Aides amp You

WWWANGELMANTODAYCOM September October 2014

the same issues as everyone

There are many ways to use Essential Oils

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 amp 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

Thank you

A Big Thanks to all of the contributors that help bring

you Angelman Today

Angelman Today Supporters Sleep Safe Bed wwwsleepsafebedcom

Linda Roberts wwwyouravoncomlindaroberts

Shari Caspert wwwyoungliving4specialneedscom

Jocelyn Silverman LHJBS18gmailcom

All of the Angelman and

Associated

Foundations

across the globe

Contributors

Ed Weeber PhD

Jodi M Duke EdD

Julie Rice

Shari Caspert

Kathy Parker

Yvonne Hamrick

Darren Humphries

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 2013 Angelman Today LLC All rights reserved worldwide

Angels in Action Celebrating the Abilities

of our Angels By Yvonne Hamrick Mom to Joshua age 10

Joshua is an artist

He LOVES to paint Our family is so proud of him

for pursuing his passions and we want to share

that dream with everyone

Joshua enjoys painting for others but mostly for

himself He has been an artist all of his life and he

knew it before anyone else did

We are so glad that we gave him that first

opportunity to paint Not only are Joshuas

paintings a means of expressing himself but its

also a great organizing tool for his body The

squishy paint between his fingers and sometimes

his toes brings him joy

Joshua often struggles to grasp things but not so

much when hes using a paint brush or another of

his artisan tools he likes to use

WWWANGELMANTODAYCOM September October 2014

As I sit and write it is a few days after my

son Elijahlsquos 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 Julies

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

Elijah Humphries February 2004 ndash August 2007

WWWANGELMANTODAYCOM September October 2014

ldquoWe treasure the

short time we

had with Elijahrdquo ndash Darren Humphries

(Father to Elijah)

At The Edge Of

The Surf

A Boy

Whorsquos

Drawn To

The Sea

I Could Sit Here

For Hours

By Darren Humphries

Itrsquos September and itrsquos time to get

organized Time for our family to get

ready to go back to school IEPrsquos

backpacks shoes clothing supplies

and Essential Oils

As parents of special needs children

we often separate our kids and

families as ldquoSpecial Needsrdquo

however the start of school brings

the same issues for everyone in our

household Our emotions excitement

amp anxiety are heightened whether we

are attending pre-school elementary

school middle school high school or

college We are all typical and have 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

Ask me how

Shari Caspert scaspertgmailcom

wwwyoungliving4specialneedscom

wwwspecialneedsmomsnet

Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew

Aromatherapy Back to School Essentials For your Special Needs Child Teacher Therapists Aides amp You

WWWANGELMANTODAYCOM September October 2014

the same issues as everyone

There are many ways to use Essential Oils

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 amp 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

Thank you

A Big Thanks to all of the contributors that help bring

you Angelman Today

Angelman Today Supporters Sleep Safe Bed wwwsleepsafebedcom

Linda Roberts wwwyouravoncomlindaroberts

Shari Caspert wwwyoungliving4specialneedscom

Jocelyn Silverman LHJBS18gmailcom

All of the Angelman and

Associated

Foundations

across the globe

Contributors

Ed Weeber PhD

Jodi M Duke EdD

Julie Rice

Shari Caspert

Kathy Parker

Yvonne Hamrick

Darren Humphries

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 2013 Angelman Today LLC All rights reserved worldwide

As I sit and write it is a few days after my

son Elijahlsquos 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 Julies

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

Elijah Humphries February 2004 ndash August 2007

WWWANGELMANTODAYCOM September October 2014

ldquoWe treasure the

short time we

had with Elijahrdquo ndash Darren Humphries

(Father to Elijah)

At The Edge Of

The Surf

A Boy

Whorsquos

Drawn To

The Sea

I Could Sit Here

For Hours

By Darren Humphries

Itrsquos September and itrsquos time to get

organized Time for our family to get

ready to go back to school IEPrsquos

backpacks shoes clothing supplies

and Essential Oils

As parents of special needs children

we often separate our kids and

families as ldquoSpecial Needsrdquo

however the start of school brings

the same issues for everyone in our

household Our emotions excitement

amp anxiety are heightened whether we

are attending pre-school elementary

school middle school high school or

college We are all typical and have 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

Ask me how

Shari Caspert scaspertgmailcom

wwwyoungliving4specialneedscom

wwwspecialneedsmomsnet

Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew

Aromatherapy Back to School Essentials For your Special Needs Child Teacher Therapists Aides amp You

WWWANGELMANTODAYCOM September October 2014

the same issues as everyone

There are many ways to use Essential Oils

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 amp 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

Thank you

A Big Thanks to all of the contributors that help bring

you Angelman Today

Angelman Today Supporters Sleep Safe Bed wwwsleepsafebedcom

Linda Roberts wwwyouravoncomlindaroberts

Shari Caspert wwwyoungliving4specialneedscom

Jocelyn Silverman LHJBS18gmailcom

All of the Angelman and

Associated

Foundations

across the globe

Contributors

Ed Weeber PhD

Jodi M Duke EdD

Julie Rice

Shari Caspert

Kathy Parker

Yvonne Hamrick

Darren Humphries

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 2013 Angelman Today LLC All rights reserved worldwide

At The Edge Of

The Surf

A Boy

Whorsquos

Drawn To

The Sea

I Could Sit Here

For Hours

By Darren Humphries

Itrsquos September and itrsquos time to get

organized Time for our family to get

ready to go back to school IEPrsquos

backpacks shoes clothing supplies

and Essential Oils

As parents of special needs children

we often separate our kids and

families as ldquoSpecial Needsrdquo

however the start of school brings

the same issues for everyone in our

household Our emotions excitement

amp anxiety are heightened whether we

are attending pre-school elementary

school middle school high school or

college We are all typical and have 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

Ask me how

Shari Caspert scaspertgmailcom

wwwyoungliving4specialneedscom

wwwspecialneedsmomsnet

Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew

Aromatherapy Back to School Essentials For your Special Needs Child Teacher Therapists Aides amp You

WWWANGELMANTODAYCOM September October 2014

the same issues as everyone

There are many ways to use Essential Oils

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 amp 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

Thank you

A Big Thanks to all of the contributors that help bring

you Angelman Today

Angelman Today Supporters Sleep Safe Bed wwwsleepsafebedcom

Linda Roberts wwwyouravoncomlindaroberts

Shari Caspert wwwyoungliving4specialneedscom

Jocelyn Silverman LHJBS18gmailcom

All of the Angelman and

Associated

Foundations

across the globe

Contributors

Ed Weeber PhD

Jodi M Duke EdD

Julie Rice

Shari Caspert

Kathy Parker

Yvonne Hamrick

Darren Humphries

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 2013 Angelman Today LLC All rights reserved worldwide

Itrsquos September and itrsquos time to get

organized Time for our family to get

ready to go back to school IEPrsquos

backpacks shoes clothing supplies

and Essential Oils

As parents of special needs children

we often separate our kids and

families as ldquoSpecial Needsrdquo

however the start of school brings

the same issues for everyone in our

household Our emotions excitement

amp anxiety are heightened whether we

are attending pre-school elementary

school middle school high school or

college We are all typical and have 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

Ask me how

Shari Caspert scaspertgmailcom

wwwyoungliving4specialneedscom

wwwspecialneedsmomsnet

Aromatherapy and Angels By Shari Caspert Mom of 17 year old Matthew

Aromatherapy Back to School Essentials For your Special Needs Child Teacher Therapists Aides amp You

WWWANGELMANTODAYCOM September October 2014

the same issues as everyone

There are many ways to use Essential Oils

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 amp 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

Thank you

A Big Thanks to all of the contributors that help bring

you Angelman Today

Angelman Today Supporters Sleep Safe Bed wwwsleepsafebedcom

Linda Roberts wwwyouravoncomlindaroberts

Shari Caspert wwwyoungliving4specialneedscom

Jocelyn Silverman LHJBS18gmailcom

All of the Angelman and

Associated

Foundations

across the globe

Contributors

Ed Weeber PhD

Jodi M Duke EdD

Julie Rice

Shari Caspert

Kathy Parker

Yvonne Hamrick

Darren Humphries

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 2013 Angelman Today LLC All rights reserved worldwide

Thank you

A Big Thanks to all of the contributors that help bring

you Angelman Today

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All of the Angelman and

Associated

Foundations

across the globe

Contributors

Ed Weeber PhD

Jodi M Duke EdD

Julie Rice

Shari Caspert

Kathy Parker

Yvonne Hamrick

Darren Humphries

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 2013 Angelman Today LLC All rights reserved worldwide

Dr Harry Angelman

1915 ndash 1996

El Dr Harry Angelman fue un meacutedico Ingleacutes quien

identificoacute lo que hoy en diacutea se llama Siacutendrome de

Angelman

Nacioacute en Birkenhead Inglaterra Le fascinaba el idioma

y la cultura de Italia

El fue el primero quien observoacute treacutes nintildeos no

relacionados quienes demostraban siacutentomas similares ndash

atrasos severos intelectuales un modo de andar que era

espasmoacutedico y riacutegido ausencia del hablar

convulsiones y una disposicioacuten contento

Luego duranted unas vacaciones en Italia descubrioacute

una pintura llamada ldquoUn Nintildeo con una Marionetardquo

creado por el artista del Renascimiento Giovanni

Francesco Caroto en el museo Castelvecchio en

Verona La pintura le hizo pensar en los nintildeos que eran

sus pacientes y le condujo a publicar un artiacuteculo

profesional en el antildeo 1965 que describiacutea lo que el

llamaba ldquoNintildeos Marionetasrdquo En aquel momento la

importancia de su artiacuteculo no fue reconocido como algo

importante

No pasoacute nada mas hasta Charles A Williams y Jaime L

Frias del departamento de Pediacuteatra Divisiacuteon de

Geneacutetica de la Universidad de Florida Colegio de

Medicina de Gainesville Florida sometieron un

artiacuteculo a la Revista Americana de Geneacutetica Meacutedica

explicando estudios de seacuteis pacientes comparando sus

datos con los de informes previos ndash incluyendo atrasos

intelectuales severos el andar como un ldquomarionetardquo

anormalidades cranio-faciales y espisodios frecuentes

de risas De repente se notoacute que eso era mucho maacutes

comuacuten de lo que anteriormente se creiacutea Ellos

propusieron ponerle el nombre de Siacutendrome de

Angelman en honor del Dr Harry Angelman

La Historia del Siacutendrome de Angelman

WWWANGELMANTODAYCOM September October 2014

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10 of your order

donated to the

Angelman Syndrome

Foundation

AVON ndash IT LOOKS

GOOD ON YOU

DISCOVER THE

AVON DIFFERENCE Linda Roberts

Independent Sales Representative

wwwyouravoncomlindaroberts

Your Ad Here

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407-509-5439

WWWANGELMANTODAYCOM SEPTEMBER OCTOBER 2014

Dr Harry Angelman

1915 ndash 1996

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 calledhellip A Boy with a Puppet by the

renaissance artist Giovanni Francesco Caroto at the

Castelvecchio museum in Verona

Reminded of the children Dr Angelman published

a paper in 1965 that described what he called

ldquopuppet childrenrdquo At this time his paper was not

immediately recognized as important

It wasnrsquot 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 ldquopuppet-likerdquo 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

The History of Angelman Syndrome

WWWANGELMANTODAYCOM September October 2014

The secret of Mael cartoon about the difference

Le secret de Maeumll dessin animeacute sur la diffeacuterence

httpyoutubed2sECQDAZG4

Click to view The Secret

of Mael Cartoon about

the difference

WWWANGELMANTODAYCOM September October 2014

The secret of Mael cartoon about the difference

Le secret de Maeumll dessin animeacute sur la diffeacuterence

httpyoutubed2sECQDAZG4

Click to view The Secret

of Mael Cartoon about

the difference

WWWANGELMANTODAYCOM September October 2014

Books Recommended by Parents

Abstract Angelman syndrome is a monogenic

neurologic disorder that affects 1 in 15000

children and is characterized by ataxia

intellectual disability speech impairment sleep

disorders and seizures The disorder is caused

by loss of central nervous system expression of

UBE3A a gene encoding a ubiquitin ligase

Current treatments focus on the management of

symptoms as there have not been therapies to

treat the underlying molecular cause of the

disease However this outlook is evolving with

advances in molecular therapies including

artificial transcription factors - a class of

engineered DNA-binding proteins that have the

potential to target a specific site in the genome

Results

Here we review the recent progress and

prospect of targeted gene expression therapies

Three main issues that must be addressed to

advance toward human clinical trials are

specificity toxicity and delivery

Conclusions

Artificial transcription factors have the

potential to address these concerns on a level

that meets and in some cases exceeds current

small molecule therapies We examine the

possibilities of such approaches in the

context of Angelman syndrome as a

template for other single-gene

neurologic disorders

Overview

Targeted gene technologies are evolving

at an incredibly fast pace This review

addresses the potential of emerging

techniques to target specific genes how

this technology works and the

limitations of these systems

_________________________________

J Neurosci 2014 Mar 2634(13)4558-66

doi 101523JNEUROSCI1846-

132014

Changes in mGlu5 receptor-dependent

synaptic plasticity and coupling to

homer proteins in the hippocampus of

Ube3A hemizygous mice modeling

angelman syndrome

Pignatelli M1 Piccinin S Molinaro G

Di Menna L Riozzi B Cannella M

Motolese M Vetere G Catania MV

Battaglia G Nicoletti F Nisticograve R Bruno

V

By Edwin J Weeber PhD

The Latest Research for Angelman Syndrome

BMC Neurosci 2014 Jun 191576 doi 1011861471-2202-15-76 The prospect of molecular therapy for Angelman syndrome and other monogenic neurologic disorders Bailus BJ Segal DJ1

WWWANGELMANTODAYCOM September October 2014

Angelman Research Contrsquod

Abstract Angelman syndrome (AS) is

caused by the loss of Ube3A an ubiquitin

ligase that commits specific proteins to

proteasomal degradation How this defect

causes autism and other pathological

phenotypes associated with AS is unknown

Long-term depression (LTD) of excitatory

synaptic transmission mediated by type 5

metabotropic glutamate (mGlu5) receptors

was enhanced in hippocampal slices of

Ube3A(m-p+) mice which model AS No

changes were found in NMDA-dependent

LTD induced by low-frequency stimulation

mGlu5 receptor-dependent LTD in AS mice

was sensitive to the protein synthesis

inhibitor anisomycin and relied on the same

signaling pathways as in wild-type mice

eg the mitogen-activated protein kinase

(MAPK) pathway the phosphatidylinositol-

3-kinase (PI3K)mammalian target of

rapamycine pathway and protein tyrosine

phosphatase Neither the stimulation of

MAPK and PI3K nor the increase in Arc

(activity-regulated cytoskeleton-associated

protein) levels in response to mGlu5

receptor activation were abnormal in

hippocampal slices from AS mice compared

with wild-type mice mGlu5 receptor

expression and mGlu15 receptor-mediated

polyphosphoinositide hydrolysis were also

unchanged in the hippocampus of AS mice

In contrast AS mice showed a reduced

expression of the short Homer protein

isoform Homer 1a and an increased

coupling of mGlu5 receptors to Homer 1bc

proteins in the hippocampus

These findings support the link between

Homer proteins and monogenic autism and

lay the groundwork for the use of mGlu5

receptor antagonists in AS

Overview This article exemplifies the fact

that we can still learn much about

molecular changes in the Angelman brain

using an animal model Here the authors

show that another important receptor the

metabotropic glutamate receptor (mGluR)

has altered function These receptors are

ldquomodifiersrdquo of the synapse and have been

implicated in numerous neuropsychiatric

disorders in particular schizophrenia The

mGluRs are different from receptors you

have already heard about NMDA and

AMPA receptors NMDA and AMPA

receptors are activated by glutamate but are

ion channels which means they allow

sodium and calcium to enter the post

synaptic neuron The mGluRs are signaling

receptors that also bind glutamate but then

they can activate other proteins on the

inside of the cell

In essence these are slower acting receptors

that support the faster acting AMPA and

NMDA receptors (even though all these

receptors are activated by the same

glutamate signal) so they are considered

ldquomodifiersrdquo of synaptic function

WWWANGELMANTODAYCOM September October 2014

WWWANGELMANTODAYCOM September October 2014

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