2013 Family Conference H

something unique with your hearts, if you did, please send us a note so we might learn from you. If you have an event that you would like to sell our Toonie for Time hearts, contact me or Gloria. We both have a supply that we can send to you at anytime. The CAWS Annual General Meeting was held in June. You will find recordings of the meeting in this newsletter issue. After the call, I felt the group was motivated to continue working to keep CAWS going on a national basis. To do this, however, we do need all of your support. I want to thank the Provincial contacts that participated and to those that tried to participate; I appreciate your commitment to CAWS. Welcome to our new Quebec contact, Jocelyne Z’Graggen. You can read about Quebec’s contact in this issue. I know families will welcome Jocelyne as much as I welcome her to our CAWS family. I continue to work with Yves, on the bylaws and potential changes as well as with the Manitoba director as we talk to the importance of everyone contacting their MP to request that they take the CAWS Awareness Week forward. There is work for everyone of us out there.

ere we are - Fall already. Summer has come and gone and I don’t know about you but boy did it go by fast. It may have been all the things I tried to cram into the summer, probably just the same as all our families. It has been a very busy time since we last connected. As you know one of the main focuses for CAWS, currently, is the 2013 Family Conference. Every time our families have got together, they tell me it helps them to connect with other families so we can share our journeys as families. We really need our CAWS family to help make this happen in 2013 so we are asking for your help across the nation to make the 2013 family conference a reality. Please let us know if there is a way for you to help: either apply for a grant on behalf of CAWS or if you are able to do a fundraiser. No contribution to our family conference is too small. Were you able to sell your Toonie for Time hearts that came to you in your newsletter? CAWS was hoping that the mailing would develop into a major fundraiser for our 2013 family conference. We, as a family, purchased the hearts as a contribution to CAWS. Maybe you did too; maybe you did

Inside e... this Issu

3 9 13 16

CAWS Contacts Annual General Meeting 2013 Family Conference Music Camp report Fall



October 2011

4 11 15 20

Across our Country Dream Makers Youth Voice Donation Form

Sheena has great news to share with you. I am not saying too much as she will share later in the newsletter. And, we are very proud of you Sheena. On another personal note, our family continues to grow. We now have six beautiful grandchildren, the newest one named, Taylor Lane Small. We celebrated her christening this fall on the same weekend as we celebrated my parents 60th wedding anniversary. We are so blessed to have birthdays – that special day for just you and then to have anniversaries that you share with your life partner. We are so pleased that our grandchildren have great grandparents who know them and can share in their growing up. I continue to work but took a personal journey this fall and opened a store. The store is a wonderful place to go after a long day at work. What a fun place to go - I just smile when I walk in and see all the baby items on display. This idea was to be for my retirement, however, the location for the store came up, so I took it. This store has also given me the opportunity to move onto another goal of ours, to give Sheena a bit of independence in her store by herself. There have been days when staff had

appointments or had to leave because of illness and I wasn’t able to get to the store so I sat on the end of my cell phone listening at the store hoping Sheena was safe and that all went well - it always did. The new store is right next door to Sheena’s and I will be able to support her in other ways. Next on my activity list was an unexpected trip to Australia. I was asked to join a study group from Alberta Association for Community Living (AACL). Wow what an experience! The trip was 14 days, some of the most interesting days I have spent and gave me a lot to think about as we continue on the journey with Sheena. Everything in Australia is very different in that all “needs” are under one umbrella so it is much harder to advocate for their family needs. Living in Alberta and having been a part of the AACL voice for many years makes me thankful for the work of AACL and our family’s advocacy that allows for Sheena, our daughter to have the life she has here in High River. She is a business woman, who lives on her own, in her own home and participates in her community as any other citizen. ... continued page 5

We can do it together

Let’s work to connect families CAWS Family Conference Saskatoon, Saskatchewan


of Dreams August 2013




October 2011



PRESIDENT Orvella Small Box 5025 High River, AB T1V 1M3 (403) 649-5604 (403) 652-0716 [email protected]

Music Camp Coordinator Basia Morawski-Bergeron 102 MacDonald St. Kirkland, QC H9J 3Z7 (514) 697-0178 [email protected]

PAST PRESIDENT Diane Reid 209 Inverness Park SE Calgary, AB T2Z 3K6 (403) 257-3581 (403) 660-2155 [email protected]

Alberta Jaimie Tinling 32 Cascade Place Cochrane, AB T4C 1G6 (403)855-1115 (403)837-7408 [email protected]

TREASURER David Olson 248B East 21st. Street North Vancouver, BC V7L 3B6 (604) 990-7718 [email protected] EDITOR/SECRETARY Gloria Mahussier 19 Pereverzoff Place Prince Albert, SK. S6X 1A8 (306) 922‑3230 (306) 922‑3457 (fax) [email protected] MEMBERSHIP Mike Mahussier 19 Pereverzoff Place Prince Albert, SK. S6X 1A8 (306) 922‑3230 (306) 922‑3457 (fax) [email protected] VIDEO LIBRARIAN Barbara Morawski-Bergeron (514) 697-0178 [email protected]

British Columbia Cindy Sanford Box 26206 Richmond, BC V6Y 3V3 (604) 564 7779 [email protected] Manitoba Coralee Crowe 27 Regis Drive Winnipeg MB R2N 1J9 [email protected] MB Convenor for Family Events Lucille Beaudin Box 30 St. Eustache, MB R0H 1H0 (204) 353-2551 [email protected] Youth Correspondent Sheena Small [email protected] 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 [email protected] 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 [email protected] Newfoundland April Williams 1680 A Torbay Rd Torbay, NL A1K 1H2 (709)437-7596 [email protected] Ontario Monique & John Plessas 163 Wolverleigh Blvd. Toronto, ON M4C 1S1 [email protected] Yves Theoret [email protected] Quebec Jocelyne Z’Graggen 108, 59ème Avenue Saint-Hippolyte, Qc J8A 1N9 Canada (450) 563 3574 [email protected] Saskatchewan Kelly Fraser 3434 Eagle Crescent Prince Albert, SK S6V 7N5 (306) 922-3783 [email protected]

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. Fall



October 2011




COUNTRY Saskatchewan

Enjoying the Day!

Apples Anyone?

Hi, my name is Emmy Barr. I am 17 years old. I have a new business: EMMY’s Carmel Apples. I am selling carmel apples; some of the money is going to me and to the Canadian Association for Williams Syndrome. My mom talked to me about helping to raise money for the Williams Syndrome Association. We were thinking about cooking carmel apples, so I did and my mom helps too. I have a Job Coach who helps me with the forms and money. I love to bake and cook too. The business is going really well. I have sold over 200 caramel apples this year in 2011. God has really blessed me. The caramel apples sell for: 1 apple is $ 2.50, or 6 apples are $12.00, or 12 for $26.00. Please let me know if you want to order. I can bring them to you, or you can pick them up at my house. My number is 1-306-692-0811 or my cell phone number is 1-306-681-7771 or you can E-mail me at [email protected]

July 9 was a beautiful, sunny day as a group of Saskatchewan families gathered in the Saskatoon Forestry farm. It was day filled with fishing, food and fun. The day was spent sharing information and supporting each other in ways that only a family network of WS families can do. It was great not having to start from “square one” when we were sharing expereinces. I know how busy families’ schedules can be making it impossible to attend events. Thank you so much to those that travelled and came to the picnic. It is very important to build a family network - see you next summer!

When I am done school I am thinking of opening a cupcake shop or something like that. Thanks, Emmy Barr

playing with the butterflies

Discover & Celebrate Diversity

The disAbility Expo provides an opportunity to learn about services, resources and strategies. For more information on this December 2 event, contact Kim Hague at 955-3444 or visit www.sacl.org Fall



October 2011

President message continued Parliament as a young woman in a wheelchair and what she has gone through to make her life accessible. We also got a chance to share our stories with her. We visited two inclusive day care programs, attended two sessions where we listened to the stories of families and so much more. We are not different however in that there is always a story and some so very heartbreaking just as there are here. I would be remiss if our CAWS family did not acknowledge the passing of Howard Lenoff this past July. Dr. Lenoff was a humanitarian activist whose activities proved to be instrumental in the establishment of the Berkshire Hills Music Academy, a unique summer camp for musical young people who have Williams syndrome which CAWS offer bursaries to attend. Let us all work together to make CAWS all that it can be, let’s put our energy and heads together to 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 too can tell our stories and learn from each other. Until the next time, I hope you have a wonderful Holiday season and all the best for the New Year.

I was billeted in three different homes in three different states. I was in the cities of Melbourne, Adelaide and Sydney and connected with many of the families that had been over to Alberta in 2009. I thoroughly enjoyed the opportunity to stay with families, to get to know them and to share stories. There is no AACL or family network (CAWS) in Australia to bring the family voices together to assist with change. There is no AACL in Australia to bring the family voices together to assist with change. The families have a very difficult time advocating for their sons and daughters to be included in education and paid employment is practically nonexistent. I heard an inspiring story called, “Cam Can” about a young man and his business. He started with waiting at people’s homes to accept deliveries or allow workers in when the owners weren’t able to be home which has developed to landscaping, shopping and many other jobs that now make up “Cam’s” business. Jill and her son Ben welcomed me into their home for six wonderful days. Jill has worked hard to ensure Ben has a meaningful life. Ben has been in the paid workforce for over 20 years which is not typical where they live. They are now working on Ben moving out into a home. We were given the opportunity to listen to a MP speak about her experience in

Orvella Small President

My parent’s 60th

My son Blake, daughter-in-law, Karie, Tycen, Joshua and Taylor Lane Fall



October 2011




c o n t i n u e d ...



New provincial Contact

Music, Dancing and Performing

The wet and soggy weather did not dampen the fun at the annual Manitoba Williams Family Picnic held June 5, 2011. This year’s host, the Roy family from Clandeboye, Manitoba, greeted many old and new friends at the Petersfield Curling Club to an afternoon of music, dancing, singing and performing. Families spent the first part of the afternoon being entertained by a local musical group, playing pool and bean bag toss, while sharing stories and experiences that transpired over the year. The highlight of the afternoon was certainly the performances that took place by our William’s children. Michelle provided a stunning performance of a ribbon routine while Keera, Rachelle, Emma, Tracey, Alysia and Trevor all took to the “stage” to sing Karaoke to their adoring fans. The afternoon ended with a Potluck Feast complete with all the picnic staples; watermelon, Rice Krispie cake and fried chicken. The day was a complete success and a special thank you goes out to Debbie and Albert Roy for all their planning and preparation. Next year’s picnic will be held in Winnipeg on Sunday June 3, 2012. We encourage all families to save the date and we look forward to seeing you there.

Anastasia is now eight years old and her younger brother Marius four years with whom she gets along very well. She goes to school in a class with children with autism spectrum disorder, but only three days weeks to conserve her energy and she receives private lessons at home the other days of the week. We live near a lake in the beautiful Laurentians in Quebec. Anastasia and the whole family enjoys the tranquility of nature. Anastasia is taking ski lessons in winter and is swimming the rest of the year. She loves swimming, skiing less, but we’ll see ... François, her Dad and I have a singing school called Le Coeur à Chanter, (the Heart to Sing.) This makes her very happy because of Anastasia loves music. I’m also teaching her the piano and she goes dancing every Sunday. I am a person who loves helping others especially in terms of psychological support. I want to offer parents who would like to have a listening ear and share of my experience to help them through their difficult moments of their lives with a child with Williams syndrome. I am pleased to be part of the Canadian family of Williams syndrome. Jocelyne Z’Graggen Quebec contact a mother’s poem for Anatasia Anastasia. A so sweet name to our ears. A so beautiful person to live with, So beautiful to watch. Anastasia A ray of sunshine, An angel without wings, A little fragile flower That we have to be able to protect. Anastasia is so aptly named, from the Greek and meaning back to life, going out of the sleep To be reborn again and again. Sleep, Baby Thou do not get much sleep. How many nights did I lulled you to sleep, How many step did I counted before Thy little too much sensitive body eventually find that sleep so much desire. Fall



October 2011




c o n t i n u e d ...

Anastasia a maintenant huit ans et son petit frère Marius 4 ans avec qui elle s’entend très bien. Elle va à l’école dans une classe TED seulement trois jours semaines pour ménager ses forces et reçoit des cours privés à la maison les autres jours. Nous habitons au bord d’un lac dans la belle région des Laurentides au Québec. Anastasia et toute la famille profitons du calme de la nature. Anastasia prend des cours de ski en hiver et de natation le reste de l’année. Elle adore nager, moins skier, mais on verra… François et moi-même avons une école de chant qui s’appelle Le Cœur à Chanter. Ce qui fait le grand bonheur d’Anastasia puisqu’elle adore la musique. Je lui enseigne aussi un peu le piano et elle prend des petits cours de danse pour le plaisir. Je suis une personne qui aime beaucoup aider les autres surtout sur le plan du soutien psychologique. Je souhaite offrir aux parents qui le désirent une oreille attentive et un partage de mon expérience pour les aider à traverser les moments délicats de leur vie avec un enfant syndrome de williams. Je suis heureuse de faire partie de la grande famille canadienne du syndrome de williams.

How many time did I asked myself on my mother's incompetence, before a speech therapist told me my daughter had an unusual way to imitate the cow. She imitated too well. Good and after ... Then came the long wait for diagnosis. And finally, lastly we received what was both a relief because we put a name to our woes, but also a great fall in a vacuum. And bereavement always to repeat And the path to accept the difference advancing every day a little bit more. Besides the pain, the discomfort, sometimes even the shame, went quietly the conviction like to live with Anastasia was a great blessing. Anastasia a little more each day Thou make us reborn to ourselves. Because for Thou, be in his heart, be filled with love and compassion Being without judgment is not just a concept But an evidence that Thou live every instant. Be present to the life Feel and hear the other one, Even into what he does not say. Hear the song of a bird in the forest far And dance, mime, singing life are for Thou as easy as breathing.

Jocelyne Z’Graggen Québec Anastasia. Un nom si doux à nos oreilles. Une personne si belle à côtoyer, si belle à regarder.

Beyond Thy difference, Anastasia Thou show us the way, The way to happiness, The path of joy, Thou offer us to go back to the essential And to forget the superfluous You teach us to Be And to let us grow wings to dance with thou.

Anastasia Un rayon de soleil, Un ange sans aile, Une petite fleur fragile Qu’il faut savoir protéger.

So thank you for all its moments When Thou call me from Thy world And when I take the time to leave my mad dash To listen for a moment the melodies of Thy soul To finally find the way to my true Self.

Anastasia qui porte si bien son nom, Du grec et qui veut dire revenir à la vie, Sortir de son sommeil Pour renaître encore et encore.

Thou are the angel that I dreamed of meeting, And I immeasurably lucky to have Thou in my life And to be Thy Mom is a delight even if it has other worries ...

Dormir, Bébé tu n’as pas beaucoup dormi. Combien de nuit t’ai-je bercée, Combien de pas ai-je comptés, avant que ton petit corps trop sensible, finisse par trouver ce sommeil tant souhaité.

So thanks for me Thank you for Thy little brother and accomplice Marius Thank you for Thy happy Dad, And for all those who dare be transformed by Thy delightful presence.

Combien de question me suis-je posée sur mon incompétence de mère, avant qu’une orthophoniste m’annonce que ma fille avait une manière atypique d’imiter la vache. Elle l’imitait trop bien. Bon et après…

Jocelyne Fall



October 2011




Puis ce fut la longue attente pour un diagnostic. Et finalement, enfin nous avons reçu ce qui fut à la fois un soulagement car nous mettions un nom sur nos maux, mais aussi une grande chute dans le vide. Et le deuil toujours à refaire Et le chemin d’acceptation de la différence qui avance chaque jour un petit peu. A côté de la peine, de la gêne, parfois de la honte, Tranquillement sont venus s’installer la conviction que de vivre avec Anastasia était une très grande bénédiction. Anastasia chaque jour un peu plus Tu nous fais renaître à nous même. Car pour toi, être dans son cœur, être rempli d’amour et de compassion Être sans jugement n’est pas juste un concept Mais une évidence que tu vis à chaque instant. Être présent à la vie Sentir l’autre et entendre l’autre, même dans ce qu’il ne dit pas. Entendre le chant d’un oiseau loin dans la forêt Et danser, mimer, chanter la vie sont pour toi aussi simple que de respirer. Au-delà de ta différence, Anastasia Tu nous montres la voie, La voie du bonheur, Le sentier de la joie, Tu nous offres de retourner à l’essentiel Et d’oublier le superflus Tu nous apprends à être Et à nous laisser pousser des ailes pour danser avec toi. Alors merci pour tous ses instants Où tu m’appelles depuis ton monde Et où je prends le temps de quitter ma course folle Pour écouter un instant les mélodies de ton âme Pour retrouver enfin le chemin de mon être véritable. Tu es l’ange que j’ai rêvé rencontrer Et j’ai l’incommensurable chance de t’avoir dans ma vie Et d’être ta Maman est un grand bonheur même si cela comporte d’autres inquiétudes… Alors Merci pour moi, Merci pour ton petit frère et complice Marius, Merci pour ton Papa, Et pour tous ceux qui oseront se laisser transformer par ta délicieuse présence. Jocelyne




October 2011

c o n t i n u e d ...




Minutes of the Annual General Meeting Canadian Association for Williams Syndrome Friday, June 24, 2011 Members present: Coralee Crowe, Gloria Mahussier, Marianne Mepham-Newton, David Olson, Alex Petrini, Yves Theoret, Diane Reid, Orvella Small Regrets: Mike Mahussier, Basia Morawski-Bergeron, Sheena Small, Kelly Fraser, Cindy Sanford The annual general meeting was held via telephone conference call. A quorum being present, Orvella Small, Chairperson called the meeting to order at 3:05 PM and welcomed everyone. 1. Adoption of Agenda Moved: Yves Theoret Seconded: Coralee Crowe That the agenda be adopted as distributed. Carried. 2. Adoption of AGM June 2010 meeting minutes Moved: Marianne Newton Seconded: Coralee Crowe That the annual meeting minutes held June 24, 2010 be adopted as distributed. Carried. 3. Reports Upon motion duly made it was unanimously resolved that the members do hereby ratify and confirm all the director’s and officer’s acts and proceedings during the fiscal year ended December 2010. Moved: Diane Reid Seconded: Yves Theoret Carried 4. Presentation of Financial Statements Moved: Coralee Crowe Seconded: Marianne Newton That the financial statements be accepted as distributed. Carried Recognition was given to Lohn Caulder Chartered Accountants for compiling CAWS financial statements. Signing authorities for the 2011 – 2012 fiscal year Motion: That the signing authorities of the Canadian Association for Williams Syndrome be Orvella Small, Chairperson, Diane Reid, Past Chairperson, David Olson, Treasurer, Cindy Sanford, Director. Any two of the above listed may sign on behalf of the association. Moved: Coralee Crowe Seconded: Yves Theoret 5. Election of Directors Nominations were opened. The following persons were elected to act as directors of the Association until the close of the next Annual General meeting. Orvella Small President Diane Reid As Past President Gloria Mahussier As Secretary David Olson As Treasurer Cindy Sanford BC contact .

Sheena Small will remain as the Youth Coordinator and is enjoying the assignment. Fall



October 2011

6. Auditor Moved: David Olson Seconded: Gloria Mahussier That the appointment of an auditor of the Association be waived effective for the current fiscal period of the Association. Carried. 7. Bylaws Orvella Small and Yves Theoret are currently reviewing the bylaw and will circulate to provincial contacts for input when the draft is prepared. 8. Other Business: o Brochure Moved: Diane Reid Seconded: Marianne Newton Motion: To print 9,500 English and 500 French brochures with cost to a maximum of $2,000 plus taxes. Carried. o Fundraising / CAWS Awareness Those present were reminded that O. Small and G. Mahussier have a supply of the Hearts should a province want some to raise funds to support the 2013 conference. There was also discussion about asking individuals to become a Dream Maker. Donations received by provincial contacts should be sent to the mailbox in Vancouver. D. Olson does monthly deposits. O. Small requested all to display the CAWS banners at CAWS gatherings. She also reminded everyone that we need to fundraise for the 2013 Family Conference. o Membership Mike reported that the mailing list has 640 individuals and 60 from outside the country. o Newsletter The colour issue was mailed in the Spring and the issue was well received. There will not be a summer issue to cover the extra cost of the coloured spring issue. o CAWS Awareness Day/Week – First week of August O. Small will send C. Crowe information on the status of the request to declare the CAWS awareness week nationally. o Website Terri McKenny continues as webmaster. 9.Orvella Small adjourned the meeting at 3:53 PM. Carried. Orvella Small, Chairperson


of Dreams August 2013

Gloria Mahussier, Secretary

CAWS Family Conference Saskatoon, Saskatchewan




October 2011

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

We would like to help make dreams come true by committing to CAWS

Dream Maker Level of ___________ for a total of $__________

__ in celebration of


__ in memory of

(please submit your story separately with photos if possible and elaboration of the occasion )

__________________________________________________________ DATE



Address: __________________________________________________

Email: ____________________________________________________




October 2011

Family Dream Maker


Dollar Amount


$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


 $100 a year for 5 years

 Your story in newsletter (we will help)

 Recognition on CAWS website Fall



October 2011




Families to gather in Saskatchewan ... maybe

very simple. Please help us to raise the resources to be able to host the 2013 conference. We all buy magazines so just buy one, ask your parents and relatives and friends to buy one also.

After speaking at the SW Region of California WS one day conference on “Creating the Dream - the Lifelong Journey with Williams Syndrome”, I was inspired to get some thoughts down on paper regarding our 2013 CAWS Family Conference to be held in Saskatoon, Saskatchewan. Jodi, Jim and I were keynote speakers to many families at the Salk Institute in LaJolla, California. Jodi spoke about her life and how her dream is unfolding as life should. Jim and I filled in the missing spots when it came to independent living, financial supports and inclusive communities.

Toonies for Time. Everyone received five hearts with your last newsletter. They are pretty but we really had hoped you would send $10 to support CAWS with these hearts. We were hoping that you could find five toonies from friends and families. You can display your hearts around your home for a time. So far we have received only minimal donations from less than five families. Jim, Jodi and I took our hearts on holidays and we sold them to friends, strangers and put them up on the resort windows along with the banner on the walkway, we took them to a wedding where instead of presents guests purchased hearts in honor of the bride and groom, we took them to a family reunion where family members purchased a few more and soon we had sold over 150 hearts. When we were working , Jim and I would have covered our office windows. Talk to your church, your local grocery stores, hardware stores, surely someone will help you to sell 50 hearts (that is if they have a heart). We have to raise at least $25,000 in this next 18 months or we will have to postpone our CAWS 5th Family Conference. I personally don’t want to see this happen and I know our families do now want to postpone the conference. Do you? Call me, email me, Facebook me, text me…I need your help. I am ready to work with any of you who have an idea. Maybe there is a grant in your area that we can apply for and put it towards the conference? The time is close when we have to decide if we have to postpone. We have about 6 months to decide as the hotel needs to be booked ASAP so it is now or a cancellation. I know we can do it, together!

The main theme through out the day was: Remember “ a vision doesn’t predict the future – it creates it”! Our next CAWS Family Conference is scheduled for August 2013 in Saskatoon, SK and this will be my vision for the next two years. BUT… we cannot hold this conference without your help and support. The fact is we need dollars and lots of it. A conference for CAWS usually runs about $50,000.00. We have been thinking and planning for a number of years about how can we find resources for CAWS. These were ideas that we came up with but are not doing as well as we had anticipated: We do get donations but they are very few. We do thank families for remembering to support CAWS and for their donations. We’ve set up the Dream Makers group but so far we only have 6 Dream Makers in all of Canada. This is a tax deductible expense with recognition to all members. We do make a bit of money from the magazines but we could make a lot more if families would just buy their magazines online. I used to work at a school where students went and sold subscriptions and with very little effort, we too, could make $10,000. This was with 350 students…well, we have 350 families or more and I see we only made a little over $400.00. If you do not have access to a computer, maybe you know someone that can order online for you? It is really Fall


Diane Reid Past Chair/Conference Chair

Consider becoming a Caws Dream Maker 13

October 2011


voice some stiff competition. I was worried but I won there too and was presented my award by the Minister of Seniors and Community Supports, Minister Jablonski. I have included some pictures here for you to see. I feel very honored to be recognized in this way and hope that what I do inspires others to reach for their dream. I volunteered once again this summer at the Calgary Stampede in two different venues. I am a Kinette in High River and so I got to work the booth at the stampede where they sell all the tickets. I sold the most Rainbow Lotteries tickets. Yay!! Then I went and helped out at the Heavy Horse Pull - where the people put the harnesses on that the big heavy horses wear and then they have to try to pull the same weight as the horses do. It is very hard to even budge the weights. This is the second year for me to participate in both of these activities. If you want to get involved with other women in your community check out your local Kinette ladies group. It is fun - this year I am the sunshine girl so I send cards to people in our group who are sick or have had a loss in their family or who are celebrating a birthday. Well, I guess that is all for now! Take care! Sheena Small , Youth Correspondent

Youth Correspondent

Hello everyone, time to share again. By the way I haven’t heard from anyone - give me an email I will get back to you.

I have had a busy time, especially with my store. I sure like the new place. I sold the Toonies for Time at my store this year, and I am sad to say I didn’t make as much money for CAWS as I have in the past so I am going to add to the funds I raised and send CAWS $100.00 all total. Hey everyone! I have some news to share. I was nominated in the spring for an award and guess what I won. I was nominated for the Regional PDD award called Individual Leadership Award, and I won. My name then went up to the provincial awards and I had

Calgary Regional Awards June 2011 – Sheena Small Winner of the Individual Leadership Award Jean Fraser, PDD Board Vice Chair, Dr. Alex Hillyard CEO PDD Board, Sheena and Jeff Nish Board Chair

Provincial Award Minister of Seniors and Community Supports, Minister Jablonski with Sheena Fall



October 2011



Jodi as Keynote Speaker

Colby entertains Prince Albert EA Rawlinson Centre

The Reid family, Diane, Jim and Jodi were keynote speakers to many families at the 2011 WSA Canyond Regional Conference, Creating the Dream: The Lifelong Journey with Williams Syndrome this past September at the Salk Institute in La Jolla, CA. Jodi spoke about her life and how her dream is unfolding as life should.

The PA Lions and PA Mental Health presented Colby Nargang on June 7 in Prince Albert. The MC for the evening was none other than Gloria Mahussier, your Editor. Tuesday evening Colby performed at the Rawlinson Centre. But he didn’t stop there. Colby Nargang, a professional tribute artist and performer, sang and made a special stop to perform speak to students at Wesmor Community High School on Wednesday about the challenges he has overcome to get where he is today.

Herald photo by Sarah Rolles

Jodi speaking at the Salk Institute

Update for Colby’s fans! Colby released his first single at the beginning of October. Check it out at colbynargang.com.

Families Do you have a question or concern?

William What is

Please email [email protected] Thank you. Fall


 $35  rial to  As a memo enue oms & Rev ada Cust r, _ ctible. Can 2115, Vancouve ____ tax dedu ________ rome are ce, P.O. Box ________ onal Offi iams Synd on for Will d to: CAWS Nati support! Associati be forwarde k you for your Canadian the may to Than tions sent All dona s can be Donation 16 RR001. #8792055 Agency 3T5 B.C. V6B

Have any parents have opted for this and has it been beneficial for you child with WS?




tion forWS CA n Associa Canadia s Syndrome: William drome

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ilies lping fam

port. financial sup y source of are our onl med. They s are welco  $65 Donation $100

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.

s Syndro

New Brochure for CAWS coming soon problems which may arise, leading to a hap ier life for the child and relief and sup ort for the parents. Ther is no “cure” for Wil iams yndrome as it is caused by a genetic/ hromosomal def ct. Should hypocalcaemia (high blo d calcium levels) oc ur in the first year or two f life, a low calcium diet is prescribed.

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October 2011


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.



Whispering Trails Music Camp

They have an indoor pool that everyone can go too when the lifeguard was there. We had a dance and got live entertainment. And the cabin was air-conditioned. I had to leave early for my flight (4 am) and a bunch of people stayed up and said goodbye. I miss my new friends a lot and hope to see everyone again. Thanks so much to CAWS for helping to make this great experience possible.

Grand Rapids, Michigan August 7 – 13, 2011

Travelling: The big day finally arrived for me to travel by car with Mom, from Lethbridge, Alberta to Great Falls, Montana to fly to Whispering Trails Music Camp. Of course I was very excited to be travelling on an airplane alone for the first and also a little apprehensive. So was mom, she asked the airline to assist me as an unaccompanied minor travelling. This really helped when I had to change planes in Minneapolis (a huge airport) and then fly onto Grand Rapids. Coming home I had a flight cancellation and rerouted to Salt Lake City, it was great to have someone helping me along the way.

Jeremy Forster (18yrs) ☺

The Camp: Was awe-inspiring and I did things I didn’t ever believe I was capable of doing, such as singing a solo of a Jimmi Hendrix song. I also sang in a small group doing a “Barbershop” version of a song. Even though I didn’t think I was very musical, it was awesome with daily 1:1 coaching and encouragement. The theme of the camp was called Williamstock (a spoof of the famous Woodstock back in the 70’s) so the


Jam session

the camp music revolved around the 70’s, my parent’s era! Mike and Jeremy

We got to do other things also, like cracking eggs over counselor’s heads! Water slides, and lots of laughs. It was a great time and we had lots of fun. My counselors were very nice and I like them a lot. We have kept in contact ever since. I grew very tight with my friends and everything was awesome. The food was very good, and the chefs where very fun to be around. We even got to “pie” our counselors.



Mark your Calendar August 2013

CAWS Family Conference Saskatoon, Saskatchewan 16

October 2011



Save the Date: November 15, 2011 Calling all Manitoba parents and caregivers: Please join us Tuesday November 15 to an informal evening of conversation and sharing regarding the joys and challenges we face as Manitoba parents of children with William’s Syndrome. For more details please contact the Manitoba Coordinator, Coralee Crowe, Thank you to those that renewed or purchased magazines! phone(204- 256-6594) or email ([email protected])” CAWS received a cheque of $408.99

Toonies for Time

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 [email protected]

CAWS Awareness week August 1 - 7


Thank you for supporting CAWS.



October 2011

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. Tribute to our wonderful grandson, Vincent Lajoie from Jean MacDonald of Grand Forks, BC. Vincent has successfully completed Grade 2. He placed 1st in the primary category in the talent show at his school. Vince played a "star wars" piece on the piano, then twirled his light sabers to a star wars tune. He really was amazing! A lovely lady that works at Value Drug Mart (Vince's parent's store) made a great costume. The entire student body and staff cheered hard for Vince. The staff at Dr. D.A. Perley Elementary School, Grand Forks, BC are to be commended for the wonderful, kind & caring atmosphere that has been created in the school. Vincent is a very popular little boy. We did a small favour for someone - they insisted on paying & I refused but said they could put the money in the "CAWS" jar – thank you. I also raised much of these funds by "using" our new home. I served lunch to a few ladies during the community garden tour in return for a donation to CAWS. We had a medical student stay during the month of June and any meals that I prepared for her resulted in a contribution to the fund. Also, her boyfriend stayed for a few nights and I "charged" him a contribution. In memory of Charles Arthur Veidt of High Level, Alberta who passed away July 5th, 2011 "Chuck" was a good friend of our family who has a niece with Williams syndrome so we find it very fitting to donate to this association. From Linda & Roy Higginson of Berwyn, AB In memory of Betty Hansen from Ervine Buckley of Saint John, NB In memory of Audrie Oliver, from Donna & Michael Henrick of Okanagan Falls, BC


Dream Makers Donation made towards their Silver Sponsorshipre Drew Blight from Newton Clan of Lower Coverdale, NB. Thank you David, Marianne, Drew, Lexi, Artie, Peter & Sadie.

TOONIES FOR TIME Enclosed with the last newsletter was our beautiful printed & cut out heart shaped “Toonies For Time”. These heart donations help support CAWS awareness and are an easy way to raise funds. Please send your money collected to CAWS, PO Box 2115, Vancouver, BC V6B 3T5. To date the following supporters have sent in their toonies for time money: Debra Stubel of St. George, ON, Diane & Jim Reid of Calgary, AB, David & Christina Olson of Vancouver, BC POT LUCK LUNCH On July 24th 2011, Knox Presbyterian Church in Harrington, ON had its 2nd annual CAWS Pot Luck Lunch to raise awareness for Williams syndrome. Thank you so much Sherri Meadows of Embro, ON for all your hard work in organizing this event. Donations given were also from Gary Meadows, Deb Matheson, Bruce Macleod, Incroft Farms Limited, and the congregation of the Knox Presbyterian Church. Fall



October 2011




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: [email protected]

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 [email protected]

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 November 15, 2011 - Calling all Manitoba parents and caregivers: Please join us Tuesday November 15 to an informal evening of conversation and sharing regarding the joys and challenges we face as Manitoba parents of children with Williams syndrome. For more details please contact the Manitoba Coordinator, Coralee Crowe, phone 204-256-6594 or email [email protected]

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.

December 2, 2011 SACL Diversity Expo, Prairieland Park, Saskatoon, SK Contact: Kim Hague at 306-955-3344 June 3, 2012 Manitoba Family Picnic to be held in Winnipeg August, 2013

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 [email protected] 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.

CAWS Family Conference Saskatoon, Saskatchewan

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 programs. Visit CAWS-CAN.org and enter our Group # 17436 to place your order. Please support our national fundraiser. Fall




January 15, 2012


October 2011



from the editor:

Thank you to Weyerhaeseur Canada, Prince Albert Division for the paper for this printing of the newsletter and to those that sent in contributions. The deadline for next issue is January 30, 2012. Gloria Mahussier

Your gifts are what keeps us active and operating. CAWS would like to gratefully thank individuals for their recent contributions. Thank you. In Honour of Travis Mahussier from Marcia Vogt via Manitoba All Charities Campaign On Behalf of Brenda Scruton of Westbank BC whose nephew in Calgary has Williams Syndrome, from Robert Scruton & Jane Topham of Oliver, BC On the Occasion of a Family Gathering from March & Anne-Marie Dureault of Fannystelle, MB On the Occasion of Chase Crowe's 3rd Birthday from Larry Powell of Roblin, MB Happy 3rd Birthday Chase! Tribute to James Wiseman An 18 month old with WS who has brought his family great joy since he was born in the Autumn of 2009 from Stephen & Elaine Wiseman of Dundas, ON, from Miss Sarah Meehan of Toronto, ON Tribute to our son John from Gregory Plante of Calgary, AB & Telus Corporation. Telus matches all eligible team members dollar for dollar. In 2010 Gregory raised $100.00 towards CAWS and Telus matched this to raise $200.00 for CAWS. Thank you to our wonderful confidential donars who contribute to our organization through: Employee donation made via United Way of Newfoundland and Labrador Inc Thank you Regina St. Croix. Employee donation made via United Way of Saskatoon & Area, Thank you Carl Lessard Employee donation made via United Way of Alberta Capital Region, Thank you Tim From Employee donation made via Ontario Power Generation of Toronto, ON Employee donation made via United Way of Toronto, thank you Nancy De Corte Employee donation made via United Way of Centraide Ottawa


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! Fall



October 2011