angelman today september - october edition 2015

Angelman Today

INCLUDING RESOURCES RESEARCH INSPIRATION

digital magazine

wwwangelmantodaycom

Angels in Action

Back to School

3 Great

Giveaways

Fall is here and it is time for the kids to head back to school After many failed

attempts to find a program for my son Nathan I am so happy to report we finally

found a school that I feel comfortable with that will support his needs After 7 years I

will finally have some time for myself Now what will I do with all of this time

When I was in the beginning stages of developing Angelman Today it was my desire

to be able to tell the story of how Angelman Syndrome came to be known Shortly

after Nathanrsquos diagnosis as I learned the history I thought it was so fascinating As a

parent I felt other parents across the globe would also want to know I didnrsquot know

how I was going to do it I certainly do not speak multiple languages to be able to

have conversations with everyone It is this amazing community that is making it

happen

The History of Angelman Syndrome has now been translated into Spanish Italian

Portuguese German Basque Turkish Greek Czech Hungarian and more

The response is amazing If you would like to help us raise awareness across the globe

and translate the history of Angelman Syndrome please email me

I hope you all have a wonderful fall season and for those in school a great supportive

school year

Warm Wishes

Lizzie Sordia

Editor - in - Chief

WWWANGELMANTODAYCOM September October 2012

EDITORrsquoS LETTER

September - October

Lizzieangelmantodaycom

Twittercomlizsordia

Twittercomangelmantoday

5

Editorrsquos Letterhelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip2 Benefits of Lemon Water helliphelliphelliphelliphelliphellip5 Angel Parent Quotehelliphelliphelliphelliphelliphelliphelliphelliphellip6 Angels in Actionhelliphelliphelliphelliphelliphellip7 Angel Parent Quotehelliphelliphelliphelliphelliphelliphellip9 If I Need Help Giveawayhelliphelliphelliphelliphelliphelliphellip10 The History of Angelman Syndrome (German)helliphelliphelliphelliphelliphelliphelliphelliphelliphellip11 The History of Angelman Syndrome (French)helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip12 Angels Week Off Vacation Giveawayhelliphelliphelliphelliphelliphelliphellip13 Angels in Actionhelliphelliphelliphelliphelliphelliphelliphellip24 Power Packed Protein Cookiehelliphelliphelliphellip25 The History of Angelman Syndrome (Spanish)helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip23 Angel Parent Quotehelliphelliphelliphelliphelliphelliphelliphelliphellip27 Harvard University Music Research28 Healthy After School Snackhelliphelliphelliphelliphellip31

Whatrsquos inside

Must See Documentarieshelliphelliphelliphellip32 Stay Connectedhelliphelliphelliphelliphelliphelliphelliphellip35 History of AShelliphelliphelliphelliphelliphelliphelliphelliphellip36 Parent Recommended Bookshelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip37

Angelman and Associated

Foundations Canadian Angelman Syndrome Societyhelliphelliphelliphelliphelliphelliphelliphelliphellip4 Associazione Angelman Onlushelliphellip17 The Angelman Syndrome Foundationhelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip18

11

On the cover Maddy age 9

Photo provided by Chris and Theresa Starks


32 31

12

24

17

Save the Date -- CASS Conference in 2016

VENUE FOR EDMONTON 2016 CONFERENCE SELECTED

Conference Co-chairs Terry Singleton and Kent Fleming advise

newsletter readers that the CASS Board has approved the Double Tree by

Hilton in Edmonton as the venue for the 14th International Conference of

the Canadian Angelman Syndrome Society scheduled for 13 to 16 July

2016

Watch the CASS Newsletter and Website wwwangelmancanadaorg for

continuing updates as planning proceeds Thank you everyone for

helping to get the word out about your Edmonton 2016 Conference

We look forward to welcoming you to an informative and enjoyable

conference

Please stay tuned to the CASS website for News Flash Updates on this

exciting event

wwwangelmancanadaorg


Drinking lemon water daily has

many great benefits

High in vitamin C which helps boost the

immune system

Reduces fever naturally

Breaks down congestion

Helps a soar throat

A digestive aid relieves constipation

Detoxifying

Balances PH

Forget about the same olrsquo OJ from concentrate

in the morning unless juicing it fresh at home


The benefits of drinking lemon water

Editorrsquos Pick For prevention and coldflu season

we skip the vaccine and boost the

immune system naturally

Here is what you will find in my

cabinet

Vitamin A Vitamin C Zinc and

Echinacea

Click on images to purchase on amazoncom

---------------------------------------------------------

One thing I know for sure is that being the parent of a child with Angelman Syndrome has taught me about true love -- a love that means Im learning (albeit slowly) to both give and receive help to extend a lot of grace (to myself and others) and to live in a way that demands nothing in return

-Lisa Jamieson

SpeakerAuthor

Angelman Today

ldquo ldquo


Angels in Action Celebrating the Abilities of our Angels

By Chris Starks Father to Maddy

Madison Jordan Starks is our beautiful albino Angel that

has truly blessed our family with her presence and her

smile Her ability to capture everyones attention with her

blue eyes and long curly blond hair is a wonder and the

norm everywhere we go Madison is deletion + and

suffers from seizures only when she is either overly

exhausted or has a fever Although Madison cant talk and

is limited on how long she can walk on her own due to her

being visually impaired she has made great strides to

become more independent Maddy as she is affectionately

known is the pride of her school and with the assistance of

a strong team she has defied the odds by becoming more

self dependent with helping us dress her trying to wash

herself and feeding herself

Maddy Age9

We watch her everyday amazed at the goodness of

God she has accomplished so much that the doctors

and specialist said she would never achieve She is

truly an Angel on earth

Madison enjoys long baths or anything involving

water she loves to eat muffins mac amp cheese burgers

and mashed potatoes Maddy loves watching Frozen

and her favorite shows come on Disney Jr and Nick Jr

Her favorite toy is a basketball just like her daddy but

above everything Madison enjoys music of all types

Her latest achievement is that we now both get to wake

up to the sound of her voice calling mommy and

daddy We wake up with great anticipation of her next

achievement The sky is the limit


Facts about Albinism in Angelman Syndrome

Maddy -On a rare occasion deletion + individuals can have a second genetic

disorder This disorder is OCA2 (also known as the P gene) located close to

the AS gene that is also missing

-Albinism in Angelman Syndrome is very rare and may occur in less than 1

-Severe visual impairment and increased incidence of strabismus is often

reported

References

From Facts about AS 2009 angelmanorg Dr Charles Williams - Professor of Pediatrics and Medical Genetics

I am so blessed to have been adopted into the AS family when I adopted my son almost 20 years ago PJ was a former student and I have never regretted the decision to adopt What a joy to have met so many wonderful AS families along our journey

-Cindy Snyder

Angelman Today

ldquo

ldquo

ldquoIf I Need Helprdquo and

ldquoAngelman Todayrdquo care so

much about this

community and the safety

of individuals with

Angelman Syndrome Now

we have partnered up to

offer you this great

giveaway

-5 Winners will

receive 4 patches

-2 Winners will

receive 2 custom

shoe tags

Enter to win wwwangelmantodaycom


Enter Promo Code Angelman Today for 5 off your 1st Purchase

Dr Harry Angelman

1915 ndash 1996

Doktor Harry Angelman war ein englischer Kinderarzt mit dem Schwerpunkt Neurologie der das Angelman-Syndrom entdeckte und bekannt machte Doktor Angelman wurde in Birkenhead in England geboren Er interessierte sich sehr fuumlr das Land Italien und seine Sprache Zu Beginn beobachtete er drei nicht miteinander verwandte Kinder die alle aumlhnliche Symptome aufwiesen starke Entwicklungsverzoumlgerung Steifheit ruckartiger Gang Sprachmangel epileptische Anfaumllle motorische Stoumlrungen aber auch ein meist zufriedenes gluumlckliches und froumlhliches Auftreten Zu einem spaumlteren Zeitpunkt waumlhrend eines Urlaubsaufenthaltes in Italien entdeckte Angelman das Oumllgemaumllde Junge mit Puppe von Giovanni Francesco Caroto im Castelveccio Museum in Verona An die beobachteten Kinder erinnert veroumlffentlichte Doktor Angelman 1965 einen Artikel der sogenannte Puppen Kinder beschrieb Zu diesem Zeitpunkt wurde sein Artikel noch nicht sofort als wichtig erkannt So blieb es bis zum Jahre 1982 in dem Charles A Williams und Jamie L Frias von der medizinischen Universitaumlt in Florida in Gainesville (Kinderklinik Abteilung Genetik) einen Artikel beim Amerikanischen Journal fuumlr medizinische Genetik einreichten Die Studie berichtete von sechs verschiedenen Patienten und verglich deren Informationen mit fruumlheren Berichten uumlber Patienten Alle mit starker Entwicklungsverzoumlgerung puppenartigem Gang veraumlnderte Schaumldel- und Gesichtsform (kraniofaziale Abweichungen) und regelmaumlssigen Lachanfaumlllen Somit wurde klar dass das Syndrom verbreiteter war als bis dahin angenommen Williams und Frias schlugen vor die Behinderung in Angelman Syndrom um zu benennen

Die Geschichte des Angelman-Syndrom (German Translation)

Angelman Today


En 2015 nous commeacutemorons

les 100 ans de la naissance

du docteur Harry Angelman

et les 50 ans de la deacutecouverte

du syndrome drsquoAngelman

Crsquoest un meacutedecin anglais le docteur Harry

Angelman qui a le premier en 1965 rapporteacute ses

constatations chez trois enfants atteints du

syndrome qui porte maintenant son nom Ce

meacutedecin avait remarqueacute que les trois enfants

preacutesentaient une deacutemarche guindeacutee et sautillante

riaient drsquoune faccedilon excessive avaient des crises

drsquoeacutepilepsieet avaient une petite tecircte aplatie agrave

lrsquoarriegravere

Harry Angelman est neacute agrave Birkenhead le 13 aoucirct

1915 et a suivi les cours de meacutedecine agrave lrsquouniversiteacute

de Liverpool Il avait observeacute trois enfants qui

eacutetaient sans rapport mais avec des symptocircmes

similaires (seacuteveacuteriteacute des troubles intellectuels

absence de langage verbal troubles moteurs et

comportement heureux) Il srsquointerrogeait quant agrave

savoir srsquoil devait publier ses conclusions Crsquoeacutetait un

passionneacute de lrsquoItalie et de la langue italienne et

lors drsquoun seacutejour en Italie qursquoil a vu un tableau qui

semblait caracteacuteriser les symptocircmes qursquoil avait

observeacutes La peinture repreacutesentait un jeune

garccedilon tenant un dessin drsquoune marionnette agrave la

main et eacutetait lrsquoœuvre drsquoun artiste de la Renaissance

Giovanni Francesco Caroto

Et dans son bulletin de 1965 il deacutecrit ceux qursquoil

appelle laquoles enfants de marionnettes raquo

Le docteur Angelman (Angelman 1991) a raconteacute

ce qui suit agrave propos de sa deacutecouverte

laquoLrsquohistoire de la meacutedecine est remplie drsquoanecdotes

inteacuteressantes se rapportant agrave la deacutecouverte des

maladies La saga du syndrome drsquoAngelman est

lrsquoune de ces histoires inteacuteressantes Crsquoest de faccedilon

purement fortuite qursquoil y a environ trente ans trois

enfants handicapeacutes ont eacuteteacute admis agrave diffeacuterents

moments dans mon service de peacutediatrie en

Angleterre

Ils avaient un certain nombre drsquoanomalies et

bien qursquoagrave premiegravere vue ils aient sembleacute

souffrir drsquoaffections diffeacuterentes jrsquoai eu

lrsquoimpression que leur maladie se rattachait agrave

une mecircme cause Le diagnostic eacutetait

uniquement clinique puisque en deacutepit de

recherches biologiques pousseacutees

et aujourdrsquohui encore plus raffineacutees il mrsquoa eacuteteacute

impossible de prouver scientifiquement que

les trois enfants avaient le mecircme handicap

Eacutetant donneacute ce fait jrsquoai heacutesiteacute agrave faire part de

mes constatations dans les revues meacutedicales

Un jour en vacances en Italie je suis tombeacute

sur une toile intituleacutee laquo Fanciullo con pupazzo

raquo (le garccedilon agrave la marionnette) au museacutee du

Castelvecchio de Veacuterone Le rire de lrsquoenfant et

le fait que mes patients preacutesentaient des

mouvements saccadeacutes me donna lrsquoideacutee

drsquoeacutecrire un article sur les trois enfants que

jrsquoavais vus et auxquels jrsquoattribuais le

qualificatif drsquoenfants marionnettes Ce

qualificatif nrsquoa pas plu agrave tous les parents mais

il a servi agrave regrouper les trois jeunes malades

sous une mecircme eacutetiquette Plus tard on a

employeacute le nom de syndrome drsquoAngelman

Lrsquoarticle publieacute en 1965 a drsquoabord susciteacute un

certain inteacuterecirct puis il a eacuteteacute oublieacute jusqursquoau

deacutebut des anneacutees 80 En fait plusieurs


The Angel Wings Foundation is bringing you an Angelman

Today Exclusive Vacation Giveaway

Last year the Angel Wings Foundation hit

upon a novel idea How about giving

someone a vacation Someone who could

really use it hellipsomeone who deserves it

hellipsomeone who might actually need it to re-

set their lives Well we did just that and it

worked out better than we couldrsquove ever

imagined

So this year wersquore doing it again One

deserving Angelman family will win an all

expense paid vacation to a music and wine

event in Napa California called ldquoLive In The

Vinyardrdquo

We realize that this isnrsquot scientific research

or new breakthrough therapy techniques or

an awareness campaign All of those things

are certainly vital and crucial to our

collective journey as Angelman parents We

cheer them on and support them

wholeheartedly But we at the Angel Wings

Foundation want to wrap our arms around

the Angelman community and give hugs

wherever and whenever we can We know

how fatiguing constant caregiving can be

We also know how isolating it can be for the

Angel to only see the same people day in and

day out So this ldquoAngel Week Offrdquo is just as

much for the Angels as it is for the parents

We will send in a male and female caregiver

to the familyrsquos home to give the Angel a

week off as well Activities will be planned

every day that donrsquot include mom and dad

After all everybody needs a break from

mom and dad sometimes Besides mom and

dad will be getting a massage or golfing or

horseback riding or drinking wine and

listening to music somewhere in Northern

California

So herersquos what you do hellipwrite an essay (500

words or less) describing your Angelman

journey We all have one and they are all

deserving of a great vacation But we can only

do one at a time right now hellipsorry An all-star

panel of judges will read the entries and

narrow them down to a top 5 The they will re-

read them and ONE family will win the

vacation

The panel consists of people from Make-A-

Wish Best Buddies Special Olympics

Angelman Today and one board member from

the Angel Wings Foundation I donrsquot read

them I just get to call you and tell you yoursquove

won hellipI love that part

All entries must be in by Thanksgiving Day

2015 A winner will be chosen and announced

on Christmas Eve hellipwhat a great Christmas

gift Then we will start making arrangements

for the vacation that will take place in April of

2016 A family member or designated care

giver (in charge) must be present with our

caregivers So keep that part in mind Safety

first

Last yearrsquos winners Mary and Rory were so

moved by the experience they have asked if

they can donate to this yearrsquos winner I think

that speaks for itself They sent in a video to

encourage everyone to enter

Hopefully one day wersquoll be able to do this

many times a year But for this year we canrsquot

wait to read the entries and award some

amazing Angel family a break and a time they

will never forget

We love you all Now get to writing

Email they essay entry to

AngelsWeekOffangelmantodaycom



meacutedecins ne voulaient pas reconnaicirctre

qursquoil existait une telle affection Toutefois au

cours des dix derniegraveres anneacutees des meacutedecins

ameacutericains et anglais ont donneacute au syndrome

des bases solides qui permettent maintenant

drsquoeacutetablir le diagnostic au-delagrave de tout doute

Apregraves le deacutecegraves du Docteur Angelman en 1996 son

eacutepouse Audrey est resteacutee particuliegraverement active et

proches des familles Elle a continueacute de soutenir

les familles lors des rencontres et de promouvoir

la sensibilisation au syndrome drsquoAngelman

jusqursquoagrave son deacutecegraves en 1999

Et en 2013 des associations de familles de

nombreux pays agrave travers le monde ont unis leurs

forces en creacuteant un collectif informel pour

commeacutemorer la premiegravere Journeacutee Internationale

du Syndrome drsquoAngelman Depuis cette journeacutee a

lieu chaque anneacutee le 15 feacutevrier

hellip laquo Quand le diagnostic Angelman vient drsquoecirctre

poseacute je dis au parents de lrsquoenfant raquo Vous allez

rencontrer des problegravemes hellip non seulement

drsquoautres les comprennent mais ils ont aussi trouveacute

des solutions Vous entreprenez un voyage que

drsquoautres ont entrepris avant vous et il nrsquoest pas

neacutecessaire que vous le fassiez seuls raquo

Le plus grand cadeau qursquoune famille Angelman

puisse offrir agrave une autre est de briser cet affreux

sentiment drsquoisolement hellip Ce cadeau a eacuteteacute fait

gratuitement des centaines de fois raquo

Audrey Angelman 1997 Seattle Confeacuterence

Ritratto di fanciullo con disegno

Giovanni Francesco Caroto (1480-1555)

Audrey Angelman a contribueacute agrave la creacuteation de la

premiegravere Angelman Syndrome Organisation

internationale (IASO) qui a depuis eacuteteacute dissoute


nombreux pays agrave travers le monde ont uni leurs

forces dans un nouveau collectif informel pour

commeacutemorer la premiegravere Journeacutee internationale

Angelman ndash qui aura lieu chaque anneacutee le 15

Feacutevrier


Nous vous recommandons la lecture drsquoun document reacutedigeacute par le Docteur Charles Williams de lrsquoUniversiteacute de Floride pour mieux connaicirctre les premiers pas du SA httpswwwpedsufledudivisionsgeneticsprogramsangelman_syndromehtm Harry Angelman a visiteacute lrsquoUniversiteacute de Floride agrave plusieurs reprises Photo ci-dessous Harry et Audrey Angelman entoureacutes par les membres de la Division de geacuteneacutetique du Deacutepartement de Peacutediatrie

Click to view this article online

httpwwwsyndromeangelman-

franceorgharry-angelman-aurait-eu-100-ans

WOULD YOU LIKE TO CONTRIBUTE

We welcome all Angelman foundations parents care takers physicians and researchers

Email your articles and pictures to Lizzieangelmantodaycom

The Italian Associazione Angelman Onlus based in Bergamo is financing the grant of a doctorate students research into the syndrome of Angelman The funding will last four years Monica Sonzogni a young Italian molecular biologist will work at the Erasmus MC in Rotterdam under the supervision of Prof Ype Elgersma Associazione Angelman Onlus will fund 30 000 euro (120 000 euro in total) which will finance the study

This will be coordinated together with the Research Foundation of the Ospedale Papa Giovanni XXIII in Bergamo The research grant is also supported by the Rotary Club of Treviglio and Pianura Bergamasca Associazione Angelman Onlus founded in Lombardy in 2012 was the initiative of a family with two main objectives bringing Angelman Syndrome to public attention as well as that of the pharmaceutical industry and helping to support the genetic research into Angelman Syndrome

From Bergamo to Rotterdam Studying Angelman syndrome Associazione Angelman Onlus is financing a four year research grant of 120 000euro


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

Angelman Syndrome Foundation Biennial Conference

THANK YOU to the 700+ attendees for making the 2015 ASF Biennial Conference the most rewarding experience to date Families walked away with a plethora of resources and new knowledge and were inspired by the research updates and discussions Thank you to the guest speakers expert lecturers and encouraging researchers for taking time with our families

You can purchase recordings of select sessions by clicking here for pricing and the order form You can click here to view more photos from the Conference

Congrats to the Award winnersDr Dan Harvey received the Harry and Audrey Angelman Award for Meritorious Service recognizing his lifelong commitment to improving the lives of our loved ones with AS and bringing the AS community together as a family

Awarded to Dr Charlie Williams the Claudia Benton Award for Scientific Research was created in memory of Dr Claudia Benton (1959-1998) Dr Benton was a pediatric geneticist pediatric neurologist and pediatrician who dedicated her research and career to advancing treatments for

individuals with AS at the Baylor College of Medicine

The 2015 ASF Biennial Conference was the most rewarding experience to date


ASF News BriefshellipCongratulations to Tim Bousum who was appointed Vice President of the ASF Board of Directors and to Justin Grill who was appointed Secretary Both will serve one-year terms in these positions Click here for the full list of ASF Board members

hellipDid you know the ASF is an approved Combined Federal Campaign charity enabling Federal employees to support the AS community The CFC is a workplace-giving program for Federal employees to payroll deduct donations to eligible deserving non-profits This is the fourth year in a row the ASF has been approved to participate The Campaign kicks off this fall and you can designate code 68074 for your donation to go to the ASF


Summit4Angelman

Kyle Rooney is father to 19-month-old Madden who was diagnosed with AS at six months old Until that diagnosis Kyle and his wife were just like any other familymdashexcited young parents eager to watch their twin sons grow and prosper But when Madden received the diagnosis they became lsquoAngelman parentsrsquo scared and overwhelmed at first learning to adjust to

their new reality This is when Kyle became exceptional Kyle will do his Summit4Angelman by climbing Mount Kilimanjaro around New Yearrsquos 2016 to raise awareness for Angelman syndrome

From Kyle himself

My trek to the top of Mt Kilimanjaro is a small tribute to my son Madden and everyone with AS Those with AS work tirelessly every day to accomplish simple tasks that most of us surely take for granted like feeding themselves standing and communicating Madden lives a life harder than most but you couldnrsquot tell by the smile on his face He doesnrsquot waiver and he never quits Hersquos my inspiration to try to climb Mt Kilimanjaro the lsquoroof of Africarsquo If trekking up one of the tallest mountains in the world motivates someone to ask me ldquoWhy are you doing this and what is Angelman syndromerdquo then Irsquove accomplished my goal Trekking to the summit of Mt Kilimanjaro is for AS and the accomplishments my son Madden reaches every day

Visit Kylersquos personal blog at wwwsummit4angelmancom to find out more about Kylersquos journey

What is your Summit4AngelmanEvery single one of us has daily Summits we reach No matter how big or small these accomplishments can be inspiring moving and even funny Please share your personal Summit story of accomplishment on Facebook and Twitter and include the hashtag Summit4Angelman It is our hope that we will all find strength motivation and escape from these stories of hard work persistence and accomplishment

How else can you helpKylersquos goal is to raise awareness and he wants to reach 19341 people Thatrsquos one new person introduced to Angelman syndrome for every foot that Mt Kilimanjaro is tall (Mt Kilimanjaro is 19341 feet tall) With your help in introducing Summit4Angelman to as many new people as possible we can reach that goal

THANK YOU for your support of Kyle and his goal to broaden awareness of AS across the world

Summit4Angelman

AS father to climb Mt Kilimanjaro to raise awareness


Summit4Angelman

Helping our loved ones with AS learn to better communicate can be challenging and overwhelming That is why the ASF in collaboration with communication expert Erin Sheldon M Ed has created a FREE new communication resource

What is it and how will it help my loved oneThe ASF Communication Training Series takes all of the hours of great communication workshops and breaks them down into smaller digestible parts so that you and your individual with AS can reach herhis greatest communication success at any age Using web-based teaching the Series is designed to be sequential and you can join at any time and proceed through the training at your childrsquos pace of learning

How does the Series workThe Series is designed to be easy to implement for families and educators and not overwhelm with too much information or ldquoto dorsquosrdquo all at once Families or caregivers are provided

bull Training tools about how to use picture symbols

bull Downloadable picture symbol display templates

bull Curriculum with step-by-step instructions to implement a communication program at home and school in partnership with your childrsquos education team

Bi-weekly webinars will provide these resources in bite-sized chunks to make it as easy as possible for families to start and stick with the training for the long-term Accompanying each webinar are concise one-page guides to help families and educators as they build on each lesson

Families are also encouraged to support each other and share tips via the Seriesrsquo private ASF Communication Training Series Facebook group

Communication training you can understand and use

ASF Communication Training Series


Updates from the ASF

Researchers seeking funding for AS-related research projects can now apply for funding year-round from the ASF Applications will be accepted on a continual basis with submission deadlines for subsequent review occurring biannually on October 15 and April 15 One- or two-year grants will be awarded for various amounts of up to $100000 per year

ldquoWe shifted in this direction so the Angelman Syndrome Foundation has the flexibility to continually fund innovative research aimed at finding treatments for ASrdquo said Dan Harvey chairman of the ASF Scientific Advisory Committee ldquoResearchers no longer have to wait for specific calls for proposals If they have a proposal that our Scientific Advisory Committee agrees is pivotal or will move research closer towards our ultimate goal of a cure we can review it and fund it quickly in order to keep research moving forward at a faster pacerdquo

Highest priority is given to pilot projects to test new ideas about pathogenesis and therapeutics of AS translational research and clinical research studies Of particular interest to the ASF are studies related to communication behavioral issues and identification of issues and treatments that impact the daily life of people with AS and their families Researchers from all countries are encouraged to apply

ASF expands research programRemember the Harry Angelman Art Contest

In celebration of Dr Harry Angelmanrsquos 100th birthday in August the ASF launched the Harry Angelman Art Contest to honor his life and work Dr Angelman loved art and it was while at the Castelvecchio Museum in Verona Italy that he saw the picture Boy With A Puppet which prompted him to write his original medical paper about the disorder

Use Dr Angelmanrsquos birthday as a way to CELEBRATE ALL PEOPLE WITH AS and create a work of art in honor of Dr Angelman Herersquos a reminder of how it works

bull Create a work of art (click here for size theme and other parameters) and submit to the ASF

bull The ASF will feature all submissions on social media angelmanorg and in other communications

bull Submissions are encouraged from ANYONE who is passionate about the AS communitymdash including and especially our individuals themselves

bull The ASF will choose the Top 10 most creative unique original and inspiring submissions and feature those prominently for the AS community to then vote on their favorite The winner will be featured on the 2016 ASF National Walk Swag Bag


The ASF created the Family Resource Team last year to assist the growing number of AS families needing support Each member of the ASF Family Resource Team has a family member with AS so each is personally familiar with AS and have experience in overcoming challenges faced by families and individuals with AS and in improving the quality of life for all involved REMEMBERmdashthese folks are here to help you so reach out to them

ASF Educational Webinars are FREE interactive webinars where you can learn relevant topics such as research updates clinical developments tips for everyday living managing symptoms and many more

The next ASF Educational Webinar will be an introduction to Individual Education Plans (IEPs) in September with a follow-up webinar about what to do if you donrsquot agree with the IEP Dates will be announced shortly and you can click here to stay up-to-date

Recordings of all previous ASF Educational Webinars are available for you to watch at your convenience Below is a sampling of the presenters topics and links to view the recordings click here to view all recordings

bull Lizzie Sordia presents products and services that may help everyday life with AS Mac and tablet users - Watch on YouTube

bull Dr Stephen Calculator discusses fostering and improving communication skills in individuals with AS Mac and tablet users - Watch on YouTube

bull Erin Sheldon discusses Literacy Instruction in the Inclusive Classroom for Students with Angelman syndrome Watch Part 1 now Watch Part 2 now Mac and tablet users - Watch Part 1 on YouTube Watch Part 2 on YouTube

bull Dr Eric Wright discusses Guardianship Mac and tablet users - Watch on YouTube

bull Dr Ron Thibert and Dr Anna Larson discuss Angelman syndrome in Adulthood

bull Dr Arthur Beaudet discusses his latest research and what it could mean for AS Mac and tablet users - Watch on YouTube Click here to read more about DrBeaudetrsquos ASF-funded research with ASOs

bull Dr Justin Grill discusses Emergency Issues in Individuals with AS Mac and tablet users - Watch on YouTube

bull Learn the ABCrsquos of the Low-Glycemic Index Treatment (LGIT) from a Mother and Expert Mac and tablet users - Watch on YouTube

ASF Family Resource Team Useful tips at your fingertips

MICHELLE HARVEY IEP Issues IEP Bank Educational Issues Advocacy

LIZZIE SORDIA General Resources (Supplies Durable Medical Goods Products Helpful Daily Living Products and Services)

DR ERIC WRIGHT Resources and Services specific to State Waivers Government Assistance Insurance and Advocacy on behalf of Individuals with AS

Click here to connect with the ASF Family Resource Team members so they can help find the resources you need

WWWWANGELMANTODAYCOM September October 2015

By Jennifer Trinkle Mom to Dylan

Dylan is 7 years old and LOVES riding his new

bike He received it from another Angelman

family at the DC walk in May He enjoys

riding into curbs and also riding up into the

neighborsrsquo lawns He gets a big kick out of it

Dylan also loves riding his therapy horse Lark

doing anything outside playing in water

watching TVmovies Curious George Thomas

the Train Disney and being around other

people He is very social and makes friends

everywhere he goes

Angels in Action

He does not know a stranger and gives hugs and

kisses to everyone He loves his family and they all

love him to pieces

Dylan will be in first grade this year and enjoys

being with his teachers and classmates He is

driven to school each day but gets super excited to

see the buses in front of the school It is hard to

walk him past them to get him to class

Once you meet Dylan you will never forget him

He has that affect on people ndash his laugh is

infectious and his smile could light up the night

sky We are so blessed to have him in our lives


GF

Ingredients - frac12 cup hemp seeds - frac12 cup of shredded coconut - frac14 cup chia seeds - 3 eggs - frac14 cup coconut flour - frac14 cup coconut oil melted - 1 frac12 tsp cinnamon - frac12 tsp ginger - 18 tsp sea salt - frac14 cup of organic maple syrup

Power Packed Protein Cookies

Dairy

Free

Place on cookie sheet in the shape of the cookie that you want They will not spread or flatten Bake at 350 degrees for 15 minutes

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 (Spanish Translation)

Angelman Today

Angelman Today

Nobodys going to put limits on my son only he decides what can and what cannot behellip thats my philosophy

-Maria Cano Moraleda Asociacion del Sindrome de angelman

(Spain)

ldquo ldquo

ldquo

bull We13 study13 physiological13 responses13 to13 music13 in13 children13 and13 adults13 with13 various13 genetic13 conditions13

bull Participants13 listen13 to13 songs13 amp13 poems13 while13 wearing13 an13 ankle13 bracelet13 to13 measure13 heart13 rate13 amp13 skin13 conductance

Participate in music research at Harvard University

bull As13 a13 thank-shy‐you13 we13 provide13 participants13 with13 cool13 toys13 and13 parents13 with13 $4513 in13 gift13 cards13

bull We13 are13 conveniently13 located13 on13 Harvardrsquos13 main13 campus13 and13 provide13 free13 parking13 for13 the13 duration13 of13 the13 study13 and13 a13 $513 travel13 reimbursement

To find out more send us an email at musicstudy+atgharvardedu

or call us at (617) 495-3503

1 of 2

Dear parent We are contacting you because we do research you might find interesting Wersquore studying how people with imprinting disorders respond to and participate in musical activities and how parents interact musically with their children The full study description is below Please read it carefully before making a decision about your childrsquos participation

In this research we are interested in how people with Angelman syndrome engage with and respond to music We are writing to ask you to consider giving permission for your child to participate in this study and whether you would like to participate as well During the study we will assess your childrsquos music perception abilities and physiological responses to music listening Over the span of about an hour we will play a variety of recorded music examples for your child While the music is being played we will measure your childrsquos physiological responses using an ankle bracelet This information will be collected over one video-recorded session (if your child prefers we can split the session over two or more visits to ensure hisher comfort during testing) Before we start testing you and your child will be given free time to explore and become comfortable in the space You will stay in the room with your child at all times and are welcome to bring in any toys or games that your child enjoys The study takes place on the main Harvard campus in Cambridge MA As part of this research we are also interested in your experiences as a parent You will be asked to complete a brief survey (about 20 minutes) in which yoursquoll think back to when your child was an infant and respond to personal questions about your parenting behaviors and your childrsquos responses to them and also describe any history of participation in the arts with your child Your responses will be kept confidential and will be used only for this research and for the purposes of institutional oversight of research activities We will also ask about your childrsquos diagnosis genetic testing basic biometric information (eg height weight BMI) relevant psychological history and medication usage If you donrsquot know the answers to those questions you may contact your childrsquos doctor to help answer them or you may leave them blank It is your choice whether or not you and your child participate in this research If you choose participation you may change your mind and leave the study at any time Declining or stopping your or your childrsquos participation will involve no penalties or loss of benefits to which you or your child are otherwise entitled We hope that participating in this research will be an enjoyable experience for you and your child As a thank-you for your participation wersquoll provide you with a toy for your child and $45 in gift cards We also provide free parking for the duration of the study along with $5 in compensation for local travel There are no known risks to participating in this study

If you and your child would like to participate please email us at musicstudy+atgharvardedu or call us at (617) 495-3503 We can answer any of your

questions about the study and help find a convenient time for you to visit the lab

2 of 2

We take data security very seriously We will video record all testing sessions and these video files will be stored in our research facility Your and your childrsquos survey responses will also be stored in this way and will also be password-protected No one other than the researchers (listed below) our staff and University officials responsible for research oversight will be able to access the videos and survey responses At the end of the study all videos and other data that contains your or your childrsquos name will be permanently destroyed If you have questions about this research please donrsquot hesitate to contact us at musicstudy+atgharvardedu Thank you for your consideration We look forward to hearing from you Best Jennifer Kotler amp Samuel Mehr Harvard University Additional contact information If you have questions about this research you may also contact the researchers for this study directly Samuel Mehr and Jennifer Kotler (samwjhharvardedu (617) 495-3503 William James Hall 1118 33 Kirkland St Cambridge MA 02138 jkotlerfasharvardedu (617) 495-3503 MCZ 401-B 26 Oxford St Cambridge MA 02138) You may also contact the faculty member supervising this work Max Krasnow (Department of Psychology Harvard University krasnowfasharvardedu (617) 495-3503 980 William James Hall 33 Kirkland St Cambridge MA 02138) This research has been reviewed by the Committee on the Use of Human Subjects in Research at Harvard University They can be reached at 617-496-2847 1414 Massachusetts Avenue Second Floor Cambridge MA 02138 or cuhsfasharvardedu for any of the following reasons

bull If your questions concerns or complaints are not being answered by the research team bull If you cannot reach the research team bull If you want to talk to someone besides the research team bull If you have questions about your or your childrsquos rights as a research participant

Great after School Snack

GF

Dairy

Free

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ldquoThe movie that will change

the way people think about

eatingrdquo

USA Today

THAT SUGAR FILM is one manrsquos journey to discover the

bitter truth about sugar Damon Gameau embarks on a

unique experiment to document the effects of a high sugar

diet on a healthy body consuming only foods that are

commonly perceived as lsquohealthyrsquo Through this entertaining

and informative journey Damon highlights some of the

issues that plague the sugar industry and where sugar

lurks on supermarket shelves THAT SUGAR FILM will

forever change the way you think about lsquohealthyrsquo food -

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Click here to rent or buy from iTunes


Thank you A big thanks to all of the contributors that help bring you Angelman Today

Angelman Today Supporters

If I Need Help ndash wwwifineedhelporg

Chewelry

All of the Angelman and

Associated

Foundations

across the globe

Additional Contributors

Dr Charles Williams

Anne Chateau

Theresa and Chris Starks

Jennifer Trinkle

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 2014 Angelman Today LLC All rights reserved worldwide

CONTRIBUTORS

Marilyn Kennedy

Assistant Editor Marilynangelmantodaycom

Sybille Kraft Bellamy

Parent Expert in Nutrition

And LGIT diet FacebookcomAngelmanSyndromeDiet


STAY CONNECTED ON THE GO

DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY

AND NOW IN THE APP STORE

Dr Harry Angelman

1915 ndash 1996

Dr Harry Angelman was an English physician

who identified what is now known as Angelman

Syndrome

He first observed three children who were not

related but showed similar symptoms of severe

intellectual delay stiff jerky gait lack of speech

seizures motor disorders and happy demeanors

Although Dr Angelman was born in Birkenhead

England he was an enthusiast for the language

and country of Italy And it was 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 Reminded of the children hersquod observed

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

Angelman Today

Books Recommended by Parents

Connect with us on

Thanks for your support

Please Share Angelman Today

wwwangelmantodaycom

Fall is here and it is time for the kids to head back to school After many failed

attempts to find a program for my son Nathan I am so happy to report we finally

found a school that I feel comfortable with that will support his needs After 7 years I

will finally have some time for myself Now what will I do with all of this time

When I was in the beginning stages of developing Angelman Today it was my desire

to be able to tell the story of how Angelman Syndrome came to be known Shortly

after Nathanrsquos diagnosis as I learned the history I thought it was so fascinating As a

parent I felt other parents across the globe would also want to know I didnrsquot know

how I was going to do it I certainly do not speak multiple languages to be able to

have conversations with everyone It is this amazing community that is making it

happen

The History of Angelman Syndrome has now been translated into Spanish Italian

Portuguese German Basque Turkish Greek Czech Hungarian and more

The response is amazing If you would like to help us raise awareness across the globe

and translate the history of Angelman Syndrome please email me

I hope you all have a wonderful fall season and for those in school a great supportive

school year

Warm Wishes

Lizzie Sordia

Editor - in - Chief


EDITORrsquoS LETTER

September - October

Lizzieangelmantodaycom

Twittercomlizsordia

Twittercomangelmantoday

5


Whatrsquos inside




11




32 31

12

24

17







2016





conference


exciting event




many great benefits


immune system



Helps a soar throat


Detoxifying

Balances PH









cabinet


Echinacea


---------------------------------------------------------


-Lisa Jamieson

SpeakerAuthor

Angelman Today

ldquo ldquo


















Maddy Age9






















reported

References



-Cindy Snyder

Angelman Today

ldquo

ldquo



much about this


of individuals with




giveaway

-5 Winners will

receive 4 patches

-2 Winners will

receive 2 custom

shoe tags




Dr Harry Angelman

1915 ndash 1996



Angelman Today















lrsquoarriegravere



























Angleterre







































imagined





Vinyardrdquo

























California









vacation















first










will never forget














































Feacutevrier

























Summit4Angelman



From Kyle himself






Summit4Angelman



Summit4Angelman





















































everywhere he goes

Angels in Action



love him to pieces











GF



Dairy

Free


Dr Harry Angelman

1915 ndash 1996



Angelman

















importante















Angelman Today

Angelman Today



(Spain)

ldquo ldquo

ldquo







or call us at (617) 495-3503

1 of 2





2 of 2




GF

Dairy

Free




eatingrdquo

USA Today










thatsugarfilmcom








Chewelry


Associated

Foundations

across the globe


Dr Charles Williams

Anne Chateau


Jennifer Trinkle


CONTRIBUTORS

Marilyn Kennedy









Dr Harry Angelman

1915 ndash 1996



Syndrome






























Angelman Today


Connect with us on



wwwangelmantodaycom

5


Whatrsquos inside




11




32 31

12

24

17







2016





conference


exciting event




many great benefits


immune system



Helps a soar throat


Detoxifying

Balances PH









cabinet


Echinacea


---------------------------------------------------------


-Lisa Jamieson

SpeakerAuthor

Angelman Today

ldquo ldquo


















Maddy Age9






















reported

References



-Cindy Snyder

Angelman Today

ldquo

ldquo



much about this


of individuals with




giveaway

-5 Winners will

receive 4 patches

-2 Winners will

receive 2 custom

shoe tags




Dr Harry Angelman

1915 ndash 1996



Angelman Today















lrsquoarriegravere



























Angleterre







































imagined





Vinyardrdquo

























California









vacation















first










will never forget














































Feacutevrier

























Summit4Angelman



From Kyle himself






Summit4Angelman



Summit4Angelman





















































everywhere he goes

Angels in Action



love him to pieces











GF



Dairy

Free


Dr Harry Angelman

1915 ndash 1996



Angelman

















importante















Angelman Today

Angelman Today



(Spain)

ldquo ldquo

ldquo







or call us at (617) 495-3503

1 of 2





2 of 2




GF

Dairy

Free




eatingrdquo

USA Today










thatsugarfilmcom








Chewelry


Associated

Foundations

across the globe


Dr Charles Williams

Anne Chateau


Jennifer Trinkle


CONTRIBUTORS

Marilyn Kennedy









Dr Harry Angelman

1915 ndash 1996



Syndrome






























Angelman Today


Connect with us on



wwwangelmantodaycom







2016





conference


exciting event




many great benefits


immune system



Helps a soar throat


Detoxifying

Balances PH









cabinet


Echinacea


---------------------------------------------------------


-Lisa Jamieson

SpeakerAuthor

Angelman Today

ldquo ldquo


















Maddy Age9






















reported

References



-Cindy Snyder

Angelman Today

ldquo

ldquo



much about this


of individuals with




giveaway

-5 Winners will

receive 4 patches

-2 Winners will

receive 2 custom

shoe tags




Dr Harry Angelman

1915 ndash 1996



Angelman Today















lrsquoarriegravere



























Angleterre







































imagined





Vinyardrdquo

























California









vacation















first










will never forget














































Feacutevrier

























Summit4Angelman



From Kyle himself






Summit4Angelman



Summit4Angelman





















































everywhere he goes

Angels in Action



love him to pieces











GF



Dairy

Free


Dr Harry Angelman

1915 ndash 1996



Angelman

















importante















Angelman Today

Angelman Today



(Spain)

ldquo ldquo

ldquo







or call us at (617) 495-3503

1 of 2





2 of 2




GF

Dairy

Free




eatingrdquo

USA Today










thatsugarfilmcom








Chewelry


Associated

Foundations

across the globe


Dr Charles Williams

Anne Chateau


Jennifer Trinkle


CONTRIBUTORS

Marilyn Kennedy









Dr Harry Angelman

1915 ndash 1996



Syndrome






























Angelman Today


Connect with us on



wwwangelmantodaycom


many great benefits


immune system



Helps a soar throat


Detoxifying

Balances PH









cabinet


Echinacea


---------------------------------------------------------


-Lisa Jamieson

SpeakerAuthor

Angelman Today

ldquo ldquo


















Maddy Age9






















reported

References



-Cindy Snyder

Angelman Today

ldquo

ldquo



much about this


of individuals with




giveaway

-5 Winners will

receive 4 patches

-2 Winners will

receive 2 custom

shoe tags




Dr Harry Angelman

1915 ndash 1996



Angelman Today















lrsquoarriegravere



























Angleterre







































imagined





Vinyardrdquo

























California









vacation















first










will never forget














































Feacutevrier

























Summit4Angelman



From Kyle himself






Summit4Angelman



Summit4Angelman





















































everywhere he goes

Angels in Action



love him to pieces











GF



Dairy

Free


Dr Harry Angelman

1915 ndash 1996



Angelman

















importante















Angelman Today

Angelman Today



(Spain)

ldquo ldquo

ldquo







or call us at (617) 495-3503

1 of 2





2 of 2




GF

Dairy

Free




eatingrdquo

USA Today










thatsugarfilmcom








Chewelry


Associated

Foundations

across the globe


Dr Charles Williams

Anne Chateau


Jennifer Trinkle


CONTRIBUTORS

Marilyn Kennedy









Dr Harry Angelman

1915 ndash 1996



Syndrome






























Angelman Today


Connect with us on



wwwangelmantodaycom


-Lisa Jamieson

SpeakerAuthor

Angelman Today

ldquo ldquo


















Maddy Age9






















reported

References



-Cindy Snyder

Angelman Today

ldquo

ldquo



much about this


of individuals with




giveaway

-5 Winners will

receive 4 patches

-2 Winners will

receive 2 custom

shoe tags




Dr Harry Angelman

1915 ndash 1996



Angelman Today















lrsquoarriegravere



























Angleterre







































imagined





Vinyardrdquo

























California









vacation















first










will never forget














































Feacutevrier

























Summit4Angelman



From Kyle himself






Summit4Angelman



Summit4Angelman





















































everywhere he goes

Angels in Action



love him to pieces











GF



Dairy

Free


Dr Harry Angelman

1915 ndash 1996



Angelman

















importante















Angelman Today

Angelman Today



(Spain)

ldquo ldquo

ldquo







or call us at (617) 495-3503

1 of 2





2 of 2




GF

Dairy

Free




eatingrdquo

USA Today










thatsugarfilmcom








Chewelry


Associated

Foundations

across the globe


Dr Charles Williams

Anne Chateau


Jennifer Trinkle


CONTRIBUTORS

Marilyn Kennedy









Dr Harry Angelman

1915 ndash 1996



Syndrome






























Angelman Today


Connect with us on



wwwangelmantodaycom


















Maddy Age9






















reported

References



-Cindy Snyder

Angelman Today

ldquo

ldquo



much about this


of individuals with




giveaway

-5 Winners will

receive 4 patches

-2 Winners will

receive 2 custom

shoe tags




Dr Harry Angelman

1915 ndash 1996



Angelman Today















lrsquoarriegravere



























Angleterre







































imagined





Vinyardrdquo

























California









vacation















first










will never forget














































Feacutevrier

























Summit4Angelman



From Kyle himself






Summit4Angelman



Summit4Angelman





















































everywhere he goes

Angels in Action



love him to pieces











GF



Dairy

Free


Dr Harry Angelman

1915 ndash 1996



Angelman

















importante















Angelman Today

Angelman Today



(Spain)

ldquo ldquo

ldquo







or call us at (617) 495-3503

1 of 2





2 of 2




GF

Dairy

Free




eatingrdquo

USA Today










thatsugarfilmcom








Chewelry


Associated

Foundations

across the globe


Dr Charles Williams

Anne Chateau


Jennifer Trinkle


CONTRIBUTORS

Marilyn Kennedy









Dr Harry Angelman

1915 ndash 1996



Syndrome






























Angelman Today


Connect with us on



wwwangelmantodaycom








reported

References



-Cindy Snyder

Angelman Today

ldquo

ldquo



much about this


of individuals with




giveaway

-5 Winners will

receive 4 patches

-2 Winners will

receive 2 custom

shoe tags




Dr Harry Angelman

1915 ndash 1996



Angelman Today















lrsquoarriegravere



























Angleterre







































imagined





Vinyardrdquo

























California









vacation















first










will never forget














































Feacutevrier

























Summit4Angelman



From Kyle himself






Summit4Angelman



Summit4Angelman





















































everywhere he goes

Angels in Action



love him to pieces











GF



Dairy

Free


Dr Harry Angelman

1915 ndash 1996



Angelman

















importante















Angelman Today

Angelman Today



(Spain)

ldquo ldquo

ldquo







or call us at (617) 495-3503

1 of 2





2 of 2




GF

Dairy

Free




eatingrdquo

USA Today










thatsugarfilmcom








Chewelry


Associated

Foundations

across the globe


Dr Charles Williams

Anne Chateau


Jennifer Trinkle


CONTRIBUTORS

Marilyn Kennedy









Dr Harry Angelman

1915 ndash 1996



Syndrome






























Angelman Today


Connect with us on



wwwangelmantodaycom


-Cindy Snyder

Angelman Today

ldquo

ldquo



much about this


of individuals with




giveaway

-5 Winners will

receive 4 patches

-2 Winners will

receive 2 custom

shoe tags




Dr Harry Angelman

1915 ndash 1996



Angelman Today















lrsquoarriegravere



























Angleterre







































imagined





Vinyardrdquo

























California









vacation















first










will never forget














































Feacutevrier

























Summit4Angelman



From Kyle himself






Summit4Angelman



Summit4Angelman





















































everywhere he goes

Angels in Action



love him to pieces











GF



Dairy

Free


Dr Harry Angelman

1915 ndash 1996



Angelman

















importante















Angelman Today

Angelman Today



(Spain)

ldquo ldquo

ldquo







or call us at (617) 495-3503

1 of 2





2 of 2




GF

Dairy

Free




eatingrdquo

USA Today










thatsugarfilmcom








Chewelry


Associated

Foundations

across the globe


Dr Charles Williams

Anne Chateau


Jennifer Trinkle


CONTRIBUTORS

Marilyn Kennedy









Dr Harry Angelman

1915 ndash 1996



Syndrome






























Angelman Today


Connect with us on



wwwangelmantodaycom



much about this


of individuals with




giveaway

-5 Winners will

receive 4 patches

-2 Winners will

receive 2 custom

shoe tags




Dr Harry Angelman

1915 ndash 1996



Angelman Today















lrsquoarriegravere



























Angleterre







































imagined





Vinyardrdquo

























California









vacation















first










will never forget














































Feacutevrier

























Summit4Angelman



From Kyle himself






Summit4Angelman



Summit4Angelman





















































everywhere he goes

Angels in Action



love him to pieces











GF



Dairy

Free


Dr Harry Angelman

1915 ndash 1996



Angelman

















importante















Angelman Today

Angelman Today



(Spain)

ldquo ldquo

ldquo







or call us at (617) 495-3503

1 of 2





2 of 2




GF

Dairy

Free




eatingrdquo

USA Today










thatsugarfilmcom








Chewelry


Associated

Foundations

across the globe


Dr Charles Williams

Anne Chateau


Jennifer Trinkle


CONTRIBUTORS

Marilyn Kennedy









Dr Harry Angelman

1915 ndash 1996



Syndrome






























Angelman Today


Connect with us on



wwwangelmantodaycom

Dr Harry Angelman

1915 ndash 1996



Angelman Today















lrsquoarriegravere



























Angleterre







































imagined





Vinyardrdquo

























California









vacation















first










will never forget














































Feacutevrier

























Summit4Angelman



From Kyle himself






Summit4Angelman



Summit4Angelman





















































everywhere he goes

Angels in Action



love him to pieces











GF



Dairy

Free


Dr Harry Angelman

1915 ndash 1996



Angelman

















importante















Angelman Today

Angelman Today



(Spain)

ldquo ldquo

ldquo







or call us at (617) 495-3503

1 of 2





2 of 2




GF

Dairy

Free




eatingrdquo

USA Today










thatsugarfilmcom








Chewelry


Associated

Foundations

across the globe


Dr Charles Williams

Anne Chateau


Jennifer Trinkle


CONTRIBUTORS

Marilyn Kennedy









Dr Harry Angelman

1915 ndash 1996



Syndrome






























Angelman Today


Connect with us on



wwwangelmantodaycom















lrsquoarriegravere



























Angleterre







































imagined





Vinyardrdquo

























California









vacation















first










will never forget














































Feacutevrier

























Summit4Angelman



From Kyle himself






Summit4Angelman



Summit4Angelman





















































everywhere he goes

Angels in Action



love him to pieces











GF



Dairy

Free


Dr Harry Angelman

1915 ndash 1996



Angelman

















importante















Angelman Today

Angelman Today



(Spain)

ldquo ldquo

ldquo







or call us at (617) 495-3503

1 of 2





2 of 2




GF

Dairy

Free




eatingrdquo

USA Today










thatsugarfilmcom








Chewelry


Associated

Foundations

across the globe


Dr Charles Williams

Anne Chateau


Jennifer Trinkle


CONTRIBUTORS

Marilyn Kennedy









Dr Harry Angelman

1915 ndash 1996



Syndrome






























Angelman Today


Connect with us on



wwwangelmantodaycom











imagined





Vinyardrdquo

























California









vacation















first










will never forget














































Feacutevrier

























Summit4Angelman



From Kyle himself






Summit4Angelman



Summit4Angelman





















































everywhere he goes

Angels in Action



love him to pieces











GF



Dairy

Free


Dr Harry Angelman

1915 ndash 1996



Angelman

















importante















Angelman Today

Angelman Today



(Spain)

ldquo ldquo

ldquo







or call us at (617) 495-3503

1 of 2





2 of 2




GF

Dairy

Free




eatingrdquo

USA Today










thatsugarfilmcom








Chewelry


Associated

Foundations

across the globe


Dr Charles Williams

Anne Chateau


Jennifer Trinkle


CONTRIBUTORS

Marilyn Kennedy









Dr Harry Angelman

1915 ndash 1996



Syndrome






























Angelman Today


Connect with us on



wwwangelmantodaycom










































Feacutevrier

























Summit4Angelman



From Kyle himself






Summit4Angelman



Summit4Angelman





















































everywhere he goes

Angels in Action



love him to pieces











GF



Dairy

Free


Dr Harry Angelman

1915 ndash 1996



Angelman

















importante















Angelman Today

Angelman Today



(Spain)

ldquo ldquo

ldquo







or call us at (617) 495-3503

1 of 2





2 of 2




GF

Dairy

Free




eatingrdquo

USA Today










thatsugarfilmcom








Chewelry


Associated

Foundations

across the globe


Dr Charles Williams

Anne Chateau


Jennifer Trinkle


CONTRIBUTORS

Marilyn Kennedy









Dr Harry Angelman

1915 ndash 1996



Syndrome






























Angelman Today


Connect with us on



wwwangelmantodaycom

























Summit4Angelman



From Kyle himself






Summit4Angelman



Summit4Angelman





















































everywhere he goes

Angels in Action



love him to pieces











GF



Dairy

Free


Dr Harry Angelman

1915 ndash 1996



Angelman

















importante















Angelman Today

Angelman Today



(Spain)

ldquo ldquo

ldquo







or call us at (617) 495-3503

1 of 2





2 of 2




GF

Dairy

Free




eatingrdquo

USA Today










thatsugarfilmcom








Chewelry


Associated

Foundations

across the globe


Dr Charles Williams

Anne Chateau


Jennifer Trinkle


CONTRIBUTORS

Marilyn Kennedy









Dr Harry Angelman

1915 ndash 1996



Syndrome






























Angelman Today


Connect with us on



wwwangelmantodaycom


Summit4Angelman





















































everywhere he goes

Angels in Action



love him to pieces











GF



Dairy

Free


Dr Harry Angelman

1915 ndash 1996



Angelman

















importante















Angelman Today

Angelman Today



(Spain)

ldquo ldquo

ldquo







or call us at (617) 495-3503

1 of 2





2 of 2




GF

Dairy

Free




eatingrdquo

USA Today










thatsugarfilmcom








Chewelry


Associated

Foundations

across the globe


Dr Charles Williams

Anne Chateau


Jennifer Trinkle


CONTRIBUTORS

Marilyn Kennedy









Dr Harry Angelman

1915 ndash 1996



Syndrome






























Angelman Today


Connect with us on



wwwangelmantodaycom











































everywhere he goes

Angels in Action



love him to pieces











GF



Dairy

Free


Dr Harry Angelman

1915 ndash 1996



Angelman

















importante















Angelman Today

Angelman Today



(Spain)

ldquo ldquo

ldquo







or call us at (617) 495-3503

1 of 2





2 of 2




GF

Dairy

Free




eatingrdquo

USA Today










thatsugarfilmcom








Chewelry


Associated

Foundations

across the globe


Dr Charles Williams

Anne Chateau


Jennifer Trinkle


CONTRIBUTORS

Marilyn Kennedy









Dr Harry Angelman

1915 ndash 1996



Syndrome






























Angelman Today


Connect with us on



wwwangelmantodaycom


GF



Dairy

Free


Dr Harry Angelman

1915 ndash 1996



Angelman

















importante















Angelman Today

Angelman Today



(Spain)

ldquo ldquo

ldquo







or call us at (617) 495-3503

1 of 2





2 of 2




GF

Dairy

Free




eatingrdquo

USA Today










thatsugarfilmcom








Chewelry


Associated

Foundations

across the globe


Dr Charles Williams

Anne Chateau


Jennifer Trinkle


CONTRIBUTORS

Marilyn Kennedy









Dr Harry Angelman

1915 ndash 1996



Syndrome






























Angelman Today


Connect with us on



wwwangelmantodaycom

Dr Harry Angelman

1915 ndash 1996



Angelman

















importante















Angelman Today

Angelman Today



(Spain)

ldquo ldquo

ldquo







or call us at (617) 495-3503

1 of 2





2 of 2




GF

Dairy

Free




eatingrdquo

USA Today










thatsugarfilmcom








Chewelry


Associated

Foundations

across the globe


Dr Charles Williams

Anne Chateau


Jennifer Trinkle


CONTRIBUTORS

Marilyn Kennedy









Dr Harry Angelman

1915 ndash 1996



Syndrome






























Angelman Today


Connect with us on



wwwangelmantodaycom

Angelman Today



(Spain)

ldquo ldquo

ldquo







or call us at (617) 495-3503

1 of 2





2 of 2




GF

Dairy

Free




eatingrdquo

USA Today










thatsugarfilmcom








Chewelry


Associated

Foundations

across the globe


Dr Charles Williams

Anne Chateau


Jennifer Trinkle


CONTRIBUTORS

Marilyn Kennedy









Dr Harry Angelman

1915 ndash 1996



Syndrome






























Angelman Today


Connect with us on



wwwangelmantodaycom







or call us at (617) 495-3503

1 of 2





2 of 2




GF

Dairy

Free




eatingrdquo

USA Today










thatsugarfilmcom








Chewelry


Associated

Foundations

across the globe


Dr Charles Williams

Anne Chateau


Jennifer Trinkle


CONTRIBUTORS

Marilyn Kennedy









Dr Harry Angelman

1915 ndash 1996



Syndrome






























Angelman Today


Connect with us on



wwwangelmantodaycom

1 of 2





2 of 2




GF

Dairy

Free




eatingrdquo

USA Today










thatsugarfilmcom








Chewelry


Associated

Foundations

across the globe


Dr Charles Williams

Anne Chateau


Jennifer Trinkle


CONTRIBUTORS

Marilyn Kennedy









Dr Harry Angelman

1915 ndash 1996



Syndrome






























Angelman Today


Connect with us on



wwwangelmantodaycom

2 of 2




GF

Dairy

Free




eatingrdquo

USA Today










thatsugarfilmcom








Chewelry


Associated

Foundations

across the globe


Dr Charles Williams

Anne Chateau


Jennifer Trinkle


CONTRIBUTORS

Marilyn Kennedy









Dr Harry Angelman

1915 ndash 1996



Syndrome






























Angelman Today


Connect with us on



wwwangelmantodaycom


GF

Dairy

Free




eatingrdquo

USA Today










thatsugarfilmcom








Chewelry


Associated

Foundations

across the globe


Dr Charles Williams

Anne Chateau


Jennifer Trinkle


CONTRIBUTORS

Marilyn Kennedy









Dr Harry Angelman

1915 ndash 1996



Syndrome






























Angelman Today


Connect with us on



wwwangelmantodaycom



eatingrdquo

USA Today










thatsugarfilmcom








Chewelry


Associated

Foundations

across the globe


Dr Charles Williams

Anne Chateau


Jennifer Trinkle


CONTRIBUTORS

Marilyn Kennedy









Dr Harry Angelman

1915 ndash 1996



Syndrome






























Angelman Today


Connect with us on



wwwangelmantodaycom




Chewelry


Associated

Foundations

across the globe


Dr Charles Williams

Anne Chateau


Jennifer Trinkle


CONTRIBUTORS

Marilyn Kennedy









Dr Harry Angelman

1915 ndash 1996



Syndrome






























Angelman Today


Connect with us on



wwwangelmantodaycom





Dr Harry Angelman

1915 ndash 1996



Syndrome






























Angelman Today


Connect with us on



wwwangelmantodaycom


Connect with us on



wwwangelmantodaycom

angelman today september - october edition 2015

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