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CAWS NEWS Oct 09.Indd F A L L N E W S L E T T E R 2 0 0 9 Conference a Success ello to all of you I met this past August at the on what was best for Sheena. We attended a WS CAWS conference and Hello to those of you I conference in the US about a year after receiving the Hhaven’t met yet but hope to meet over time. diagnosis which put us on the journey that we have As the incoming President for CAWS I would like been on ever since that conference. It was important share a bit about myself and my family. I have been to have expectations of not just Sheena but of the married to Fraser for 35 years and we have 4 wonder- supports that we wrapped around her. We became very ful grown up children and 5 grandchildren. proactive and worked hard at ensuring Sheena had an This past June I was elected as inclusive education as well as an inclusive community the CAWS President and what an honor to hold this life. position at this time when so much work has been Sheena attended school and was done to heighten the awareness of Williams Syndrome included from Kindergarten to Grade 12 inclusive. She in Canada. The “National CAWS Awareness Week” graduated from school with a diploma and followed will go a long way to create awareness across Canada. through on her dream to own a candy store. Sheena We owe a debt of gratitude to MP Bill Siksay for opened “Sheena’s Sweets and Such” for business in furthering our request and managing to have it tabled September of the same year (4 years ago now). She in Parliament. We now need to fi nd a champion get it lives on her own with some supports and enjoys the debated in the House to have it declared. So still some chance to live independently – however we are only a work to do! phone call away. We have 3 sons and a daughter. Blake As the incoming President for (Kari), Wade (Crystal) and Matthew (Lara) are the CAWS it is my goal to continue to work for and with brothers and sisters-in-laws to Sheena our daughter each and every one of you to ensure the best life for who was diagnosed with Williams syndrome when she our sons or daughters/brothers or sisters. The CAWS was 3 and a half. Family conference this past summer gave us plenty of It was a relief to us once we had the information around inclusion at work, school and play diagnosis as we could start making plans and decisions and medical facts that hopefully provided answers to 3 CAWS Contacts 4 Across the Country 5 Music sponsorship 8 Conference report Inside 9 CAWS Awareness Week 11 Conference moments this Issue... 14 Music Survey 15 CAWS Dream Maker 19 Bulletin Board 20 Donation Form Fall newsletter November some of the family’s questions. On that topic, I want With a little bit of effort, we were to share that my platform during my tenure as Presi- able to raise support for CAWS and bring awareness dent is to look at ways to support or possibly initiate to those who knew about Sheena’s diagnosis but didn’t more research around Williams syndrome in Canada. have a lot of detail on WS. Sharing with our family One of the presenters, Dr. Bamforth, is willing to meet and asking for their support raised awareness with and discuss research options. I will keep you updated, sixty more people across Alberta and Saskatchewan. as we meet and discuss the possibilities. Yeah! Swayze Family! And for those that are curious, This SMALL family has been very yes we are related to Patrick or at least Sheena’s busy upon our return from the CAWS Family confer- connection is 7th cousin twice removed. ence around raising awareness for CAWS in our com- With the enthusiasm of our youth munity but also with our extended family. To begin, at the conferenence, I am just waiting for one of our Sheena hung the CAWS banner in her candy store youth to come forward and volunteer as CAWS Youth window and sold the CAWS hearts Toonies for Time Correspondent. Your voice should be heard in our and raised $136.00 from the community of High River. newsletter! The conference was a great opportunity We hosted the Swayze Family Reunion during the Sep- for all the CAWS Contacts to meet in person as well as tember long weekend. It was important to us to raise fi nding new volunteers. Welcome to Kelly Fraser, our the awareness for CAWS with my family. To help with Saskatchewan Contact. our goal, we held a silent auction on a picture of the In this issue you will fi nd a short main street where the Swayze family lived in Carnduff, music survey that asks you questions about your Saskatchewan. Sheena’s Grandpa Swayze, my father, music life. All feedback will be compiled into a designed and built a one-of-a-kind frame for the pic- document that will share the value music plays in your ture with secret compartments which held information life. Please complete the survey by December 15 and about the buildings in the picture. The auction raised send to send to JB Music. $525.00 for CAWS. Other family members organized I would like to invite you to get in a football pool for the game between the Riders and touch with me anytime. My contact information is in the Bombers. The pool raised another $82.50 which the newsletter. I look forward to hearing from you! was donated to CAWS. Another family member made Have a blessed Christmas and all my best wishes for a a donation to CAWS of $50.00. Our weekend total of happy and prosperous New Year. Until the next time! $793.50 was raised for CAWS. Thank you to our fam- ily members for being so supportive. Orvella Small CAWS President The Small/Swayze families Fall newsletter November A S S O C I A T I O N C O N T A C T S PRESIDENT MUSIC CAMP COORDINATOR Nova Scotia Orvella Small Basia Morawski-Bergeron Anne Louise Desrosiers Box 5025 102 MacDonald St. 1675 Cambridge St. High River, AB T1V 1M3 Kirkland, QC Halifax, NS B3H 4A5 (403) 649-5604 H9J 3Z7 (902) 422-0270 (403) 652-0716 (514) 697-0178 [email protected] [email protected] [email protected] New Brunswick PAST PRESIDENT Alberta Marianne Mepham Diane Reid Jaimie Tinling 44 Calais Crescent 209 Inverness Park SE 32 Cascade Place Lower Coverdale, NB E1J 2K9 Calgary, AB T2Z 3K6 Cochrane, AB T4C 1G6 H: (506)384-9426 (403) 257-3581 (403)855-1115 (403)837-7408 W: (506)860-2374 (403) 660-2155 [email protected] Marianne.Mepham-Newton [email protected] @horizonnb.ca British Columbia [email protected] TREASURER Cindy Sanford David Olson Box 26206 Newfoundland 248B East 21st. Street Richmond, BC April Williams North Vancouver, BC V6Y 3V3 1680 A Torbay Rd V7L 3B6 (604) 214-0132 Torbay, NL A1K 1H2 (604) 990-7718 [email protected] (709)437-7596 [email protected] [email protected] Manitoba EDITOR/SECRETARY LaRae Langford Ontario Gloria Mahussier 216 - 43 Weatherstone Place Monique & John Plessas 19 Pereverzoff Place Winnipeg, MB F2J 2S9 344 Aylesworth Avenue Prince Albert, SK. S6X 1A8 (204) 285-8707 Scarborough, ON (306) 922-3230 [email protected] (416) 269-7030 (306) 922-3457 (fax) [email protected] [email protected] MB Convenor for Family Events Lucille Beaudin Quebec MEMBERSHIP Box 30 Postion Vacant Mike Mahussier St. Eustache, MB R0H 1H0 Volunteer required 19 Pereverzoff Place (204) 353-2551 Prince Albert, SK. S6X 1A8 [email protected] Saskatchewan (306) 922-3230 Kelly Fraser (306) 922-3457 (fax) Youth Correspondent 3434 Eagle Crescent [email protected] Position Vacant Prince Albert, SK S6V 7N5 Volunteer Required (306) 922-3783 VIDEO LIBRARIAN [email protected] Barbara Morawski-Bergeron (514) 697-0178 Visit our website Nunavut/N.W.T. [email protected] www.CAWS-CAN.org Position Vacant Volunteer required If you would like to fi nd 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 newsletter November A C R O S S O U R C O U N T R Y Alberta Saskatchewan Summit a Success Saskatchewan Assured Income On the evening of Friday, October 16th, family members were given the opportunity for Disabilities (S.A.I.D.) to mix and mingle with local allies. Over 60 family On May 13th, 2009 the Government of members, professionals and other community Saskatchewan announced that a new income support members had the pleasure of hearing an original system for people with disabilities will be launched remake of Petula Clark’s “A Sign of the Times”, with this fall. This announcement means that many people lyrics adapted to the matters that families in our area living with disabilities will no longer depend on social are facing. Everyone also enjoyed a assistance for their basic living expenses. wonderful presentation by Jodi Reid For many years, disability advocates about her experiences as a young have lobbied the provincial government to create an woman with a disability, living on income system separate from welfare (a system that her own, going to University, and was designed for short-term needs) that adequately having a job.
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