Winter 2012

WINTER
NEWSLETTER
2012
New Brochure hits Street
H
appy New Year! I hope you are staying warm
where ever you are in Canada. Some of us
have been in a freeze since just after New
Years and have had to contend with snow and ice.
I hope all of you had a wonderful
Christmas with family and were able to celebrate a
warm welcome to the New Year. I just have to touch
on how important family becomes as we move along
in the years. This is the first year we stayed home in a
long time and also the first year we were able to travel
to two of our grandchildren’s Christmas concerts.
We had to make a decision as to whether we did this
as grandparents and with Auntie Sheena or if Auntie
Sheena stayed home to work in her store. Well, being
that it was her first Christmas in the new location we
decided she needed to be in the store. But when all
the grandchildren asked where Auntie Sheena was, we
felt very sad that she wasn’t there to see the concert
performances. They know Sheena lives in the same
town so have an expectation that she will just be there.
It warms my heart to think that Sheena is so important
to those little people who love her for who she is –
besides being the auntie with candy that is. I think we
will need to revisit those concerts and with Auntie
Sheena in attendance - store or no store! We were
Inside e...
this Issu
3
6
8
fortunate this year to have all of our family come to
our home either on Christmas Eve or Christmas day.
What a joy for us! Our oldest son and his family and
my parents travelled from southeast Saskatchewan to
be with us and our other two sons and their families
travelled from the Red Deer area. The best Christmas
ever - to have the different generations altogether in
one place was fantastic.
Connecting with families is very
important to me – if you have sent an email and
haven’t heard back in what you feel is a timely
manner, please send me another email. I have had
families get in touch mainly by email and sometimes
we lose each other or there is a typo in the way I wrote
down the email. If I haven’t returned your phone call
sometimes it maybe because someone else took the
message and didn’t pass it on so, please try again.
Do you have plans for a provincial
activity, fund raiser, picnic or something that could use
some publicity? Let me know and I will have it posted
on the website. This is an important time for families
who might be new and have missed the mail out
but might be able to find you and the activity on the
website. We need to connect and we need to use our
website in a way that families can make connections
CAWS Contacts
Music Camp Sponsorship
Our Dreams Makers Winter
newsletter
1
January 2012
4
7
16
Across the Country
Youth Voice
Donation Form
We are one more year closer to the
next conference for CAWS. Thank you Diane for
working so hard to make the conference a reality!
Once again we need to work together to support each
other and ensure that CAWS families stay connected
and current. If we all put our energy and heads
together we can ensure our family members have what
they need to live a meaningful life. One of those ways
being to ensure the next conference happens so we can
tell and hear our stories and learn from each other and
the professionals that will attend.
Take care, please support the national
magazine fundrasier and I look forward to a beautiful,
warm spring!
and feel supported through this media. Let’s stay
connected.
The Annual General meeting will
be once again scheduled in June. I am proposing the
date will be around the 22 of June but please watch our
website for dates and times. If you want to participate
in the AGM it is important that you get in touch with
me so I can make sure you receive the package. This
is also a good time for the provincial contacts to take
a look at their time commitments and decide if they
are able to continue to do the job or if they need some
more help. If you would like to assist your provincial
contact please let us know. We will have an update on
the AGM in the spring newsletter.
This is a good time to think about the
Registered Disability Savings Plan (RDSP) for your
sons and daughters. If you are not sure about what this
plan can do for you ask your accountant or your bank.
This is one way for our family members to have a
retirement savings plan with matching funding coming
from the government. You can also check the RDSP
out at the RDSP Resource Center www.rdspresource.ca
or call 1-855-773-7377.
Since the last newsletter we have had
the brochure printed and it is ready for distribution.
If any of you would like some copies to give out to
doctors offices, school teachers, employers, church or
families, please get in touch. Thank you Gloria for all
the time and effort that went into updating the brochure
and then ready to go!
Rhonda Levesque, PA Fast Print in
Prince Albert has been our newsletter printer for many
years. Thank you for donating the paper for our last
newsletter publication and securing a whole year of
paper from Unisource Inc., Saskatoon for CAWS!
Orvella Small
CAWS President
Sheena and Grandpa and Grandma Swayze
Auntie Sheena and Ryker
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make friends with peers
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* obsessional interest in certain things: e.g.
cars, ambulances, vacuums, wheels etc.
* fear of heights, open stairs, uneven surfaces
* very short concentration span adding to learning
difficulties, high distractibility
* emotional immaturity exhibited by over-
reaction to
events and exaggerated displays of fear, excitement, sadness, happiness etc.
Hypersensitivity to noise:
This is the clue most common to all Williams
syndrome children. About 90% show great distress
on hearing sudden loud noises, such as guns firing,
balloons bursting, Christmas crackers, fireworks etc.
Treatment
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Winter
newsletter
2
January 2012
Individuals with Wil iams syndrome can develop health
problems related to the syndrome and also
ordinary health problems unrelated to the
syndrome. It is important to make good use
of local resources (e.g. general practitioners,
health visitors, local education departments)
in addition to using specialists and experts
in Williams syndrome. Continuing further
education can help to realize full potential.
association
contacts
PRESIDENT
Orvella Small
Box 5025
High River, AB T1V 1M3
(403) 649-5604
(403) 652-0716
omsmalls@telus.net
Music Camp Coordinator
Basia Morawski-Bergeron
102 MacDonald St.
Kirkland, QC
H9J 3Z7
(514) 697-0178
jgbergeron@sympatico.ca
PAST PRESIDENT
Diane Reid
209 Inverness Park SE
Calgary, AB T2Z 3K6
(403) 257-3581
(403) 660-2155
jdreid@telusplanet.net
Alberta
Jaimie Tinling
32 Cascade Place
Cochrane, AB T4C 1G6
(403)855-1115 (403)837-7408
cawschairs@shaw.ca
TREASURER
David Olson
248B East 21st. Street
North Vancouver, BC
V7L 3B6
(604) 990-7718
davidnchristina@telus.net
EDITOR/SECRETARY
Gloria Mahussier
19 Pereverzoff Place
Prince Albert, SK. S6X 1A8
(306) 922‑3230
(306) 922‑3457 (fax)
mahussier.m@sasktel.net
MEMBERSHIP
Mike Mahussier
19 Pereverzoff Place
Prince Albert, SK. S6X 1A8
(306) 922‑3230
(306) 922‑3457 (fax)
mahussier.m@sasktel.net
VIDEO LIBRARIAN
Barbara Morawski-Bergeron
(514) 697-0178
jgbergeron@sympatico.ca
British Columbia
Cindy Sanford
Box 26206
Richmond, BC
V6Y 3V3
(604) 564 7779
cawsbc@yahoo.com
Manitoba
Coralee Crowe
27 Regis Drive
Winnipeg MB R2N 1J9
dcrowe@mts.net
MB Convenor for Family Events
Lucille Beaudin
Box 30
St. Eustache, MB R0H 1H0
(204) 353-2551
lbeaudin@xplornet.com
Youth Correspondent
Sheena Small
sweets_1@telus.net
Nunavut/N.W.T.
Position Vacant
Volunteer required
Visit our website
www.CAWS-CAN.org
Nova Scotia
Anne Louise Desrosiers
1675 Cambridge St.
Halifax, NS B3H 4A5
(902) 422-0270
ald@ns.sympatico.ca
New Brunswick
Marianne Mepham
44 Calais Crescent
Lower Coverdale, NB E1J 2K9
H: (506)384-9426
W: (506)860-2374
Marianne.Mepham-Newton
@horizonnb.ca
marianne-n-david@rogers.com
Newfoundland
April Williams
1680 A Torbay Rd
Torbay, NL A1K 1H2
(709)437-7596
aprildswilliams@hotmail.com
Ontario
Monique & John Plessas
163 Wolverleigh Blvd.
Toronto, ON M4C 1S1
momslilangel@rogers.com
Yves Theoret
cawsontario@live.ca
Quebec
Jocelyne Z’Graggen
108, 59ème Avenue
Saint-Hippolyte, Qc
J8A 1N9 Canada
(450) 563 3574
coeurachanter@bellnet.ca
Saskatchewan
Kelly Fraser
3434 Eagle Crescent
Prince Albert, SK S6V 7N5
(306) 922-3783
schmister@hotmail.com
If you would like to find out more about the role of a Provincial Contact
contact Orvella Small, CAWS President
If you would like to volunteer in your province, call your Provincial contact person.
Winter
newsletter
3
January 2012
ACROSS
the
Ontario
COUNTRY
Manitoba
Ontario families on Facebook
Save the Date
http://www.facebook.com/cawsontario
June 3, 2012 is the date set for our Manitoba family
picnic, to be held in Winnipeg.
If you want to help, contact Coralee at dcrowe@mts.
net or Lucille Beaudin at 353-2551.
July 3 to 7, 2012
National Williams Syndrome Convention
Sheraton Boston Hotel, 39 Dalton Street,
Boston, MA
In mid-November a number of
Manitoba parents and family members of Williams
children gathered at the Forks in Winnipeg. The Forks
are located where the Red River joins the Assiniboine
River and have been a meeting place for thousands of
years … there seemed no better place to congregate!
Stories and suggestions were shared
on issues that we, as well as our children, were
currently dealing with. One family shared their recent
experience with the transition of having a William’s
child to having a William’s adult. One of the most
surprising lessons that families walked away with was
the need for Trust planning. Unknown to the family
that shared their story was the inheritance left by their
daughter’s grandmother, years earlier was considered
an asset and disqualified her from receiving disability
support benefits until the inheritance was exhausted.
This led the family to countless hours sitting with
accountants and financial planners to ensure that this
would not happen with the portion of an inheritance
they currently had outlined in their will for their
daughter.
Fortunately, in Manitoba there
is a solution for parents and guardians of persons
with special needs that will allow them to leave an
inheritance without disqualifying the individual with
a disability from receiving disability benefits from
the government. It is called the Henson Trust Fund,
sometimes called the absolute discretionary trust, and
is certainly something that my husband and I will be
looking into for our son Chase. I encourage you to do
the same.
Conversation also took place surrounding the value of the upcoming Convention in
2013. Many parents have attended in the past and
found that it was extremely beneficial to meet and
connect with other families affected by Williams Syndrome. We are looking forward to seeing everyone in
Saskatoon in 2013.
For more information, contact: WSA National
Office info@williams-syndrome.org
Coralee Ctrowe
Manitoba contact
Over 75 parents, families and friends attended the WS
Picinic at Earl Bales Park in Toronto on Sunday, June
5, 2011. Great weather, lots of fun!
Alberta
20th Annual Family Conference
Date: April 13 - 14, 2012
Time: 9:00 am - 4:30 pm
Location: Fantasyland Hotel, Edmonton, AB
Contact: mail@aacl.org
Hosted by Alberta Association for Community Living
Register Now!
August 2013
Field of Dreams
CAWS Family Conference
Saskatoon, Saskatchewan
USA National WS Convention
Winter
newsletter
4
January 2012
William
syndrome
in
the
news
On NBC
ABC 20/20 Story
Researchers have puzzled over
that extreme friendliness for
decades, pondering the causes
and complicated traits that go
with the syndrome that affects
1 in every 10,000 people, says
Ursula Bellugi, a researcher at the Salk Institute in La
Jolla, Calif., who has studied the disorder for a quartercentury.
They've come to believe that Williams
syndrome, which is characterized by unique genetic
markers and distinct behaviors, may actually hold the
secrets to understanding other better-known disorders
— including autism.
Williams syndrome is the perfect test
case for studying the link between genes and behavior,
Bellugi said. The disorder is very specific, occurring
only when a certain cluster of genes is missing from
one of two copies of chromosome 7.
“We’re only talking about something
like 25 to 28 genes out of 30,000 genes in the brain,”
Bellugi said. “And it’s always the same set of genes.”
That genetic deletion creates a welldefined but diverse set of characteristics. People with
Williams syndrome have distinctive facial features,
often described as “elfin,” including small, upturned
noses, wide mouths and lips, a longer span between
nose and upper lip and tiny, widely spaced teeth. They
often suffer from heart, skeletal and dental problems.
Those with Williams syndrome
have a distinctive pattern of intellectual peaks and
valleys, including low IQs, developmental delays and
learning disabilities, all coupled with rich, imaginative
capacity for language — and those exuberantly social
personalities.
“The behavior is quite consistent,”
Bellugi says. “In terms of their social interest, their
social drive, attraction to strangers, looking at faces,
looking more intently at faces. We have this kind of
social phenotype that we’ve been studying.”
To watch video segment and read more visit:
Friendly to the Extreme: Meet Kids and Adults With
Williams Syndrome
http://abcnews.go.com/Health/
friendly-extreme-meet-kidsadults-williams-syndrome/
story?id=13795416#.TxMnn_lkidk
NIH Awards Salk Institute $5.5
Million Grant To Study WS
A multi-institutional team headed
by Ursula Bellugi, professor and director of the
Laboratory for Cognitive Neuroscience at the Salk
Institute for Biological Studies, has been awarded a
$5.5 million Program Project Grant by the National
Institute of Child Health and Human Development
(NICHD) to link social behavior to its underlying
neurobiological and molecular genetic basis using
Williams syndrome as a model.
The current grant is the latest chapter
in a unique and exceptionally successful scientific
alliance under the umbrella of a longstanding NICHDfunded Program Project, one of the first of its kind.
Led by Bellugi, a team of researchers working in such
disparate fields as social cognition, stem cell biology,
neuronal architecture and neuroimaging are looking
to Williams syndrome to provide clues to some of the
mysteries of the genetic basis of social behavior.
Participating researchers: Salk Institute for Biological
Studies, Ursula Bellugi (Program Director); Fred Gage
Terry Sejnowski, University of California, San Diego;
Katerina Semendefari, Alysson Muotri, Eric Halgren ,
University of Utah; Julie Korenberg
For more information visit: http://www.
medicalnewstoday.com/releases/226086.php
to watch an interview and read more, visit: http://
today.msnbc.msn.com/id/44779678/ns/today-today_
health/t/super-social-#.TxMj4vlkidl
Winter
newsletter
Visit our website
CAWS-CAN.org
5
January 2012
music
camp
sessions on alternate days. Group music classes will include
chorus and ensemble. Other classes include computers and
music appreciation.
Fitness and recreational activities will
feature working out in the exercise center, movement class,
nature exploration and outdoor games. Evenings and break
times will offer talent shows, dances guest performers and
field trips to nearby attractions.
So, fill out an application today! If you
did not receive a scholarship in a previous year or wish to
try again, do not hesitate, write to me soon.
CAWS Sponsorship
Summer Music Camp
Is it that time of the year again?
Yes, it is time to start thinking about making
plans for summer music camp. As most of you know, CAWS
offers each year a scholarship for a Canadian youth to attend
a music camp for individuals with WS in the United States.
There are two (2) camps to choose from:
the Williams Syndrome Music and Enrichment Whispering
Trails camp in Grand Rapids, Michigan, August 7 - 13 or the
Berkshire Hills Music Academy summer program, August
14-21.
To apply for a scholarship, the application
consists of completing a sheet with pertinent information
about the applicant wanting to attend as well as sending a
recording (on tape or CD) of the person performing. All
applicants for the CAWS scholarship must be 15 years or
older. Applications must be sent to me by February 28,
2012. Chances of winning the scholarship are very high. I
hope to hear from you soon!
If you would like to see campers in action
at Whispering Trails, please call 248-244-2229 or e-mail:
info@williams-syndrome.org to request a copy of a recent
camp video. If you are interested in this year’s summer
program at Berkshire Hills, call Mike Hudgik at 413-5409720 x202 or e-mail him at mhudgik@berkshirehills.org
Barbara (Basia) Morawski-Bergeron
CAWS Bourse pour un Camp
d’été en Musique
C’est le temps de penser aux vacances
d’été pour l’année prochaine. Pourquoi pas un camp de
musique aux Etats-Unis, dédié à nos jeunes atteints du
Syndrome de Williams. Comme par le passé, l’Association
canadienne pour le Syndrome de Williams offre à chaque
année une bourse à un individu atteint par le syndrome pour
participer à un tel camp d’été.
Vous avez le choix de deux camps : le
Williams Syndrome Music and Enrichment Whispering
Trails Camp à Grand Rapids, au Michigan, ou le programme estival de la Berkshire Hills Music Academy au
Connecticut.
Pour appliquer, il suffit de me faire
parvenir une lettre contenant toutes informations pertinentes
sur la personne qui veut aller au camp, la raison pour son
intérêt dans un tel camp ainsi qu’un enregistrement (sur
cassette, CD ou vidéo) de la personne jouant son instrument
de musique ou s’exécutant. Le/la candidat(e) doit avoir au
moins 15 ans. Les demandes d’application pour la bourse
doivent parvenir au plus tard le 28 février 2011. Les
chances de recevoir une bourse sont énormes. J’espère avoir
de vos nouvelles bientôt!
Si vous désirez avoir un aperçu du camp
Whispering Trails, adressez-vous au 248-244-2229 ou
envoyez un courriel à: info@williams-syndrome.org et
demandez une copie d’un vidéo récent d’un camp d’été. Si
vous êtes intéressé par le programme offert par la Berkshire
Hills, contactez Mike Hudgik au 413-540-9720 x202 ou
passez lui un courriel à mhudgik@berkshirehills.org
Pour une brève desciption des deux (2)
camps, n’hésitez par à communiquer avec moi.
Below are brief descriptions of the camps:
Whispering Trails Camp
Our scholarship is ONLY for the camper
interested in the music activities track at the camp. A traditional camp session lasts one (1) week.
Activities include daily ‘individual’ music
lessons and group music activities such as theatre and/or
chorus and band. Additionally, campers will be able to elect
activities from a menu of choices including, swimming,
basketball, dance, archery, arts & crafts.
Campers who are 18 or older also have the
option to enroll for a 10-day camp session which includes
special activities and off-site excursions (coffee house
evening with live entertainment provided by the staff, an
evening of bowling and an afternoon of miniature golf, go
karts, laser tag, video games)
Berkshire Hills Academy
This program is intended for young adults,
ages 16-25, who have a high musical aptitude with mature
group behaviour skills.
The summer program is an extension of
the Academy’s school-year program. Following a musical
evaluation, participants will have private voice, keyboard or
instrument lessons every other day, with coached practice
Winter
newsletter
Barbara (Basia) Morawski-Bergeron
(514) 697-0178
6
January 2012
youth
voice
Youth Correspondent
I am also going to do a piece of art
with the help of a local artist for my local charity they do a "Show the Love - Art Gala" every year and
families and artist friends of SNAPS donate their art
pieces and then there is a live auction and the funds go
to support SNAPS programs. I haven't done art for a
long time but I am excited to try it again.
Hey you guys, have any of you had to
say good bye to a pet? What was your Christmas like?
Come on share your stories - hope to hear from you!
Happy New Year Everyone:
What a Christmas and New
Year! I stayed at my folks
house for Christmas this year,
we didn't travel my brothers and
their families came out here. We
had fun, played games, visited and ate
lots! I had a visiter from Saskatchewan come to my
store during the season - Emmy from Moose Jaw and
her family. Thanks for
dropping by - great to
see you and catch up!
I have some sad news
too - we had to put
our long time family
pet - Sierra - a yellow
lab - to sleep! I really
miss her too! Here is
a picture of her and
me! I'm taking it pretty
good but I miss her
especially when I go to
my mom and dad's house where she lived.
For those of you who don't know I
have a single CD and in November we gave it out at
a fundraiser for a local charity. Anyway one of the
attendees gave it to the radio 99.7 here in High River
and they played 3 times just this past weekend on
Alberta Made. Hey I feel like a celebrity! The things
that happen that you don't expect. Oh and I am also
going to sing at our Saturday night hang out some
night with some of the local talent that perform during
Hair of Dog, that is when local music performers
come and play and sing for the people in the Pub.
Gitter's does a lot to give local talent a stage and the
opportunity to show their best.
Sheena Small
Small Things Inc, 403-652-2270
Hey
Colby fans!
CAWS Family Conference
Saskatoon, Saskatchewan
Check out Colby’s
performances on
U-tube.
Field
of Dreams
August 2013
Winter
newsletter
7
January 2012
Dream Makers
Helen Deckert Kitchener, ON Bronze sponsor
Wandrienna Everdiena Shibley Calgary, AB Silver sponsor
Fraser Small, High River, AB Silver sponsor
Sharon McColl Edmonton, AB Silver sponsor
Marianne & David Newton Lower Coverdale, NB Silver sponsor
Jim & Diane Reid Calgary, AB Platinum sponsor
Claudia & Markus Rebmann Woodbridge, ON Platinum sponsor
Carol & David Lajoie Grand Forks, BC Platinum sponsor
We would like to help make dreams come true by committing to CAWS
Dream Maker Level of ___________ for a total of $__________
__ in celebration of
or
__ in memory of
(please submit your story separately with photos if possible and elaboration of the occasion )
__________________________________________________________
DATE
NAME
PHONE #
Address: __________________________________________________
Email: ____________________________________________________
Winter
newsletter
8
January 2012
Family Dream Maker
Level
Dollar Amount
Platinum
$2000 & Up
Family Rewards
 $1000 a year for 2 years
 Recognition on CAWS website
 Your story in newsletter
(CAWS will help you to write your story)
 Hotel room for 2013 Family Conference
3 nights (Conference room rate)
Gold $2500
 $500 a year for 5 years
 Recognition on CAWS website
 Hotel room for 2013 Family Conference
1 night (Conference room rate)
 Sponsor on Conference T-shirt
Silver
$1000
 $200 a year for 5 years
 Your story in newsletter (we will help)
 Recognition on CAWS website
 Award Trophy for CAWS Canadian Idol (CAWS to provide trophy)
Bronze
$500
 $100 a year for 5 years
 Your story in newsletter (we will help)
 Recognition on CAWS website
Winter
newsletter
9
January 2012
Ws
Statistics
Prevalence rate of WS
Williams Syndrome:
WARNING! EXTRAPOLATION ONLY!
Not based on country-specific data sources.
The following table attempts to extrapolate the
above prevalence rate for Williams Syndrome to the
populations of various countries and regions. These
prevalence extrapolations for Williams Syndrome are
only estimates, based on applying the prevalence rates
from the US (or a similar country) to the population
of other countries, and therefore may have very
limited relevance to the actual prevalence of Williams
Syndrome in any region:
The word 'prevalence' of Williams Syndrome
usually means the estimated population of people
who are managing Williams Syndrome at any given
time (i.e. people with Williams Syndrome). The
term 'incidence' of Williams Syndrome means the
annual diagnosis rate, or the number of new cases of
Williams Syndrome diagnosed each year (i.e. getting
Williams Syndrome). Hence, these two statistics
types can differ: a short disease like flu can have high
annual incidence but low prevalence, but a life-long
Country/Region
Used
Extrapolated Prevalence Population
Population Estimation
USA
Canada
39,154
293,655,4051
4,334 Warning! (Details)
32,507,8742
United Kingdom 8,036 Warning! (Details) 60,270,7082
disease like diabetes has a low annual incidence but
high prevalence. For more information see about
prevalence and incidence statistics.
About extrapolations of prevalence and incidence
statistics for Williams Syndrome:
Warning: EXTRAPOLATED STATISTICS ONLY! Not based on data sources from
individual countries. These statistics are calculated
extrapolations of various prevalence or incidence
rates against the populations of a particular country
or region. The statistics used for prevalence/incidence
of Williams Syndrome are typically based on US,
UK, Canadian or Australian prevalence or incidence
statistics, which are then extrapolated using only the
population of the other country. This extrapolation
calculation is automated and does not take into account
any genetic, cultural, environmental, social, racial
or other differences across the various countries and
regions for which the extrapolated Williams Syndrome
statistics below refer to. The extrapolation does not use
data sources or statistics about any country other than
its population. As such, these extrapolations may be
highly inaccurate (especially for developing or thirdworld countries) and only give a general indication
(or even a meaningless indication) as to the actual
prevalence or incidence of Williams Syndrome in that
region. These statistics are presented only in the hope
that they may be interesting to some people.
About prevalence and incidence statistics in general for
Winter
newsletter
For more information visit: http://www.
rightdiagnosis.com/w/williams_syndrome/statscountry.htm#extrapwarning
Mark your Calendar
August 2013
Fields of Dreams
CAWS Family Conference
Saskatoon, Saskatchewan
10
January 2012
A
family‘s
story
WS - One family’s Story
However, I did know one thing about
her – she had a very loving smile and during the short
It took three years to find out our
periods when she was well, that loving personality
daughter had Williams syndrome, writes Ann Breen.
shone through. There were many times when her little
The lowest point of my life was the
smile had saved her from my wrath at five o’clock in
day I had to watch my baby daughter rolling around on
the morning!
the floor of the livingroom in pain and knowing that
By Christmas 1985, she was still
there was no point in picking up the phone because
suffering. I brought her back to the local hospital
nobody would listen.
on December 31, 1985, and told the paediatrician
We had already been to the most
we needed to know what was wrong with Karen. It
eminent doctors in the country and they told us
was awful not knowing what the
she wasn’t in pain, yet she so
problem was, if she was going
obviously was. We had no idea
to live or die, what was round
what we were dealing with and
the corner for us. We were living
that was the worst part of the
from day to day and all of us
early years of her life.
were beginning to crack under
Karen was born
the strain. Mark, our son, had
on August 19, 1983, at Portiunreceived very little of his parents’
cula Hospital, Ballinasloe, after a
attention since Karen was born, so
normal pregnancy. My late hushe too was suffering. Yet again we
band Paschal and I were thrilled
were referred back to Our Lady’s
that the baby was a girl, as we
Hospital in Crumlin.
already had a boy of two-and-a
On 27 January,
half called Mark.
1986,
Karen
was
diagnosed as
As an infant,
having Williams syndrome. I felt
Karen had difficulty in feeding
numb. Having waited so long to
and keeping her bottle down. She
be told, I could not take it in when
began to suffer what we thought
finally it happened. I suppose I
was colic, crying for three to
Ann Breen and daughter, Karen had always hoped that whatever it
five hours at a time during the night.
was could be fixed by medication. I
This persisted until she was about
had
not
expected
a
“syndrome”, especially one I had
nine months old. She refused solid food and, despite
never heard of. Paschal and I spent the next couple
many visits to the local hospital for observation and
of months trying to come to terms with the situation.
investigation, no one could pinpoint what her problem
We did not know where to turn for information on
was.
Williams syndrome. We looked at our beautiful
It was also apparent at this stage that
daughter and wondered what her future would be.
Karen’s development was very slow. She was making
Then something brought me out of
no effort to walk and was not terribly interested in
my lethargy. My colleagues at work collected money
what was going on around her. Then, she developed a
and sent me and Karen to Lourdes on a pilgrimage.
rectal prolapse. After the awful shock the first time it
When we returned, I set about finding out as much as
happened, I had to learn to cope with it. This was when
I could about Williams syndrome. I set up a support
the doctors told me it was not causing Karen any pain
group for other WS families, the Williams Syndrome
and that it would correct itself when she got older.
Association of Ireland, which became a registered
She was referred to Our Lady’s
charity. The group has since taken up a huge part of
Hospital in Crumlin for investigation in November
my life.
1984. While there, she had surgery on two hernias.
Karen attended St Hilda’s Special
At this stage Karen was a year-and-a-half old. She
School
in
Athlone
until she was 18 when she moved
had had such a hard time since she was born that we
onto the Brothers of Charity Services in Ballinasloe.
felt that we hardly had time to get to know her as an
As she grew, she developed a friendly personality but
individual.
Winter
newsletter
11
January 2012
Families
did not relate to her peers very well and was always a
loner. Like most WS individuals, she has obsessions.
When she was 14, Pat Kenny of RTÉ
was the love of her life. Music is her big love now:
she plays the keyboard and listens to everything from
Westlife to Imelda May.
For six summers, we went to a weeklong music camp in the US and started our own camp
in Ireland in 2001. We also went to the European
Special Olympics in Holland in 2000 where Karen
won medals for swimming. These are only some of the
things she brought to our lives.
Karen is now 27. She will never
be able to live independently of me or a carer and
will never be able to get a job. You have to be fairly
strong-minded to deal with the idea that you will have
somebody dependant on you forever. When you have a
child with a disability, you never get away from it. It’s
the first thing you think about in the morning and the
last thing at night. It’s an awful responsibility.
Since Paschal passed away in 2008,
that has rested solely on my shoulders. The law of
averages says I’ll be gone before her. I know Mark
will always look out for Karen, but he works in Dublin
and has his own life. He can’t be expected to look after
her for the rest of her days: there will have to be some
other arrangement in place after I’m gone.
On a more positive note, Karen has
brought so much to our lives.
Do you have a
question or concern?
Have you found a
resources that you
want to share?
My son has been in speech therapies since the age of
3. He has received OT, and physio since about the same age.
I am considering paying for Hyperbaric Oxygen Therapies
for him. Have any parents have opted for this and has it been
beneficial for you child with WS? Please email linnfraser@
yahoo.ca Thank you.
I'm sending you this special child,
to cherish in my name.
For you to love with all your heart,
and teach him just the same.
For he is not like other babes, nor will he ever be.
But you can love him just the same,
and take good care of him for me.
The road is hard, he'll break your heart,
you'll cry a million tears.
But I promise when he smiles at you,
the pain soon disappears.
I know you'll cry "why him, why us"
but i needed teachers true.
And that is why with care and trust,
I've selected you.
So please don't turn your back on him
although he may be slow.
If you accept him as he is,
then together you will grow.
He needs to learn the skills of life,
for that I've chosen you.
And with your love to guide him,
I know you'll see him through.
Don't try to see the future,
I promise that to none.
Just live each day for all it's worth
and enjoy my special one.
Author unknown.
to read more visit: http://www.myspecialneeds.ie/
blog/index.php/williams-syndrome-one-familys-story/
Mark your Calendar
August 2013
CAWS Family Conference
Saskatoon, Saskatchewan
Winter
newsletter
12
January 2012
support
for
caws
Thank you to our confidential Donors
Milden Combined Appeal Donor's Choice of Milden,
SK donated as part of their Donor's Choice Campaign;
Employee donation via United Way Toronto , Thank
you Nancy De Corte; Employee donation via Ontario
Power Generation Inc Toronto, ON; Employee donation from Regina St. Croix via United Way of Newfoundland and Labrador Inc.
Thank you to those that renewed or purchased magazines!
Toonies for Time
Thank you to Rhonda Levesque, PA Fast Print in
Prince Albert for the donation of paper for our last
newsletter publication and securing a year’s donation
of paper from Unisource Inc. Saskatoon!
Visit our website
www.CAWS-CAN.org
Your gifts are what keeps us
active and operating
Did you sell any Toonies for Time hearts
to help support CAWS?
If you want more
Contact Orvella at 403.649.5604 or
omsmalls@telus.net
CAWS Awareness week
August 1 - 7
Winter
Thank you for supporting CAWS.
newsletter
13
January 2012
s u p p o r t
f o r
c a w s
Your gifts are what keeps us active and operating. CAWS would like to
gratefully thank individuals for their recent contributions. Thank you.
In memory of Dorothy Nutter, Grandmother to Karla Samulski from Arlene Templier,
Chilliwack, BC; from Frances Gibbins, West Vancouver, BC
Christmas Charities continue with Families: Charitable Donation in honour of Corinne Hingston
In honour of my wife's sister Corinne Hingston of Calgary, Alberta. Corinne's son Peter McLaughlin has
Williams Syndrome. We are making this donation in lieu of a Christmas Gift for her. Merry Christmas and a
happy New Year from Dave & Brenda Scruton of Westbank, B.C.
CAWS FUNDRAISING INITIATIVES
Dream Makers Donation made towards Bronze Sponsorship Helen Deckert of Kitchener, ON.
also wishing one and all a Blessed Merry Christmas and a peaceful New Year.
She
Dream Makers Donation made towards their Silver Sponsorship Sharon McColl of Edmonton, AB
Dream Makers Silver Sponsorship Carol & David Lajoie of Grand Forks, BC
Dream Makers Silver Sponsorship Claudia & Markus Rebmann Woodbridge, ON
TOONIES FOR TIME
Lucie & Denis Lachance and our wonderful son Patrick of Montreal, QC. Patrick, our son, sold
his toonies and we are adding to help support CAWS. Thank you for the great job.
Don & Jean MacDonald of Grand Forks, BC
Way to go Vanessa - Largest Toonies Fundraiser
Andrea Holdsworth (mom) wrote:
My daughter Vanessa is a wonderful girl. She
loves her music, her ipod, her make-up, and her
babies. Vanessa is a 13 year old TWEEN and
loves to spend time with her friends and family
and her dog Bandit. Vanessa has helped raise
funds for "TOONIES FOR TIME" with big
support from her church family at St. David's
United Church, lots of family and friends. A
big thank you to Grandma Linda, Grandma
Sweetheart and Vanessa for all their hard work.
Winter
Vanessa and grandparents
newsletter
14
January 2012
bulletin
ADDRESS CHANGES
board
COLUMN CONTRIBUTIONS
Please send your contributions for future newsletter
features to :
Gloria Mahussier
19 Pereverzoff Place
Prince Albert, SK. S6X 1A8
Phone: (306)922-3230
Fax: (306)922-3457
E-mail: mahussier.m@sasktel.net
Please send your address changes
and corrections to:
Mike Mahussier
19 Pereverzoff Place
Prince Albert, SK S6X 1A8
phone: 306-922-3230
fax: 306-922-3457
mahussier.m@sasktel.net
Across the Country: A column to share with families
events across the country and encourage parents to
write about accomplishments their child or sibling
has made in regards to the individual with WS.
Achievements, no matter how great or small, can be
enthusiastically shared!
Happenings
April 13/14, 2012
Alberta ACL
Family Conference
Edmonton, AB
Info at mail@aacl.org
June 3, 2012
Manitoba Family Picnic
to be held in Winnipeg
June 9, 2012
SACL Family Conference
Garden Hilton Inn
Saskatoon, SK
info at www.sacl.org
July 3/7, 2012 National WSA Convention,Sheraton Boston Hotel, more information, info@williams-syndrome.org
August, 2013
CAWS Family Conference
Saskatoon, Saskatchewan
Helpful Resources: Resources such as video tapes,
computer software, games, books, etc., that parents or
the family’s interagencies have found to be helpful in
assisting our children meet developmental milestones
and achieve specific learning concepts.
Medical/Educational information: Articles
concerning research and information pertaining to
ongoing projects on medical and education issues.
Youth Voice: A page to place and share works by
individuals with WS, be it an art sample, a photo, an
essay, poem, stories, etc.
Website Bulletin Board: Ask a question or share
information. Please forward your bulletin board
contribution to cawschairs@shaw.ca with the words,
“Bulletin Board” in the subject line of your email.
Please allow one week for your posting to appear on
the bulletin board. All questions to be posted will be
edited and reviewed before posting.
What is happening in your province?
Give your Provincial Contact a call!
CAWS newsletter is published quarterly. Due to limited
space, we may not be able to print every item received.
We report items of interest relating to WS and will
provide a forum for other items of interest. CAWS
does not promote or recommend any therapy, treatment,
professional system, etc. We reserve the right to edit all
material.
Visit our website
www.CAWS-CAN.org
DID YOU KNOW?
When you order through the QSP magazine program,
over one-third of the subscription price “stays at home”
to support CAWS. Visit CAWS-CAN.org and enter our
Group # 17436 to place your order.
NEXT SUBMISSION DEADLINE
April 15, 2012
Please support our national fundraiser.
Winter
newsletter
15
January 2012
thank
you
from the editor:
Thank you to Rhonda Levesque, PA Fast Print for the paper for the printing of our fall 2011nnewsletter and for securing
a year’s donation of paper from Unicsource Inc., Saskatoon . The deadline for next issue is April 15, 2012.
Gloria
Your gifts are what keeps us active and operating. CAWS would like to gratefully thank
individuals for their recent contributions. Thank you.
Sandy & Anthony Podmoroff of Grand Forks, BC;Ronald Benjamin, Calgary, AB; Kelly Lohn, West
Vancouver, BC; Thomas Spes ,Toronto, ON;Theresa & Joseph Mooney in recognition of a friend & former
associate at Grand Forks Realty, Jean MacDonald & her very special grandson Vince Lajoie.
Tribute from Robert Scruton & Jane Topham of Oliver, BC on behalf of Brenda Scruton of Westbank,BC
Tribute to Vincent LaJoie & his Grandmother Jean MacDonald, from Linda & Paul Tottman of Winfield, BC
Tribute to Akiva Fishman on a job well done at school from Dr. Michele Feierstein of Winnipeg, ON..
Congratulations Akiva on a a job well done at school.
Tribute to Lise Gruber on the occasion of Graduation Grade 12 from Teunisje Harrison of Calgary, AB.
Congratulations of your achievements.
Tribute to our sweet Ava Meadows from Knox Presbyterian Church of Embro, ON
Tribute to Vincent Lajoie from Mr. & Mrs. MacDonald of Edmonds, WA
On the occasion of Tom May's 35th Birthday from Larry & Valda May of Norval, ON; Happy 35 Tom!
On the occasion of James Wiseman's second birthday from Elaine & Stephen Wiseman of Dundas, ON
Happy second birthday sweet James .
On the occasion of Marc Trudel’s birthday on February 15 and I want to wish him a very happy, happy
birthday, Francoise Trudel Aylmer, QC
On the occasion of Amanda’s 24th birthday which was on February 11 and her amazing new found friendship
with Holly Hodson who also has Williams syndrome, from Richard & Wendy Mary Hall of Nanaimo, BC
"Happy 24th Birthday, Amanda”
DONATION FORM
Attached is my cheque payable to CAWS in the amount of:
 $100
 As a memorial to _____________________
 A tribute to __________________________
 On the occasion of ____________________
 $65
 $35
(Birthdays, Anniversary, Graduation, etc.)
Donations to the Canadian Association for Williams Syndrome are tax deductible. Canada Customs & Revenue
Agency #879205516 RR001. All donations may be forwarded to: CAWS National Office, P.O. Box 2115,
Vancouver, B.C. V6B 3T5
Thanks for your support!
Winter
newsletter
16
January 2012