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C e r e b r a l P a l s y A s s o c i a t i o n o f B r i t i s h C o l u mbi a

The Roundtable
Fall 2006

Words from President
Merry Christmas and/or Happy Holidays! 2006, indeed, has been a busy year. It has brought us new beginnings with our move to the new office in downtown Vancouver. The Board of Directors has been busy developing a long term strategic plan. This will give us the ‘flight plan’ as we move into 2007 and beyond. We have received funds to establish a fundraising plan and the strategic plan will be an integral part of the strategy.
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Inside this issue:
Words from President What has the CPABC been up to? Words from Secretary Disability Support Funding News & Sites Colours of My Life Writing Your Own Will Membership & Donation form Info 6

We had another successful AGM on September 19, 2006. Both Donald Renaud & Halldor Bjarnason were the keynote speakers. Don talked about the law and cerebral palsy and Halldor presented a lighter and humorous perspective of living with cerebral palsy. Attendees enjoyed both speakers and I am appreciative of both of them for stepping forward. Besides the move, we accomplished the revision and printing of two resource publication, these being, the Guide to CP and Living with CP. I would like to acknowledge and say thank-you to Louise Gaudry for taking the lead on this project and to the folks that Louise brought in to assist her. Another notable accomplishment is that the CPABC has fulfilled its original commitment to the Bridges to the Future program for our young people. We have now joined with the Muscular Dystrophy, BC Paraplegic and Spina Bifida in the oversight of this much utilized initiative. I continue to represent CPABC at various meetings/events on your behalf. I have been spending some time with the Provincial Equipment and Assistive Devices Committee. The end product of this initiative will pave the way for an easier and accessible means in obtaining the necessary aids required for people with disabilities to be engaged in their personal lives and in their communities. We will look forward to seeing Members and Community Partners at our Open House to be held on Friday, February 02, 2007 (check page 5 for more details). Stay tuned for further details. On behalf of the Board of Directors, I would like to wish you and your family all the best during this holiday season. Stay safe and have a Happy New Year. Your President, Craig Langston

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Check us out on the web at
www.bccerebralpalsy.com

Thank you For reading The Roundtable.

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By Feri Dehdar The Cerebral Palsy Association of BC (CPABC) is a charitable organization, was established in 1954, thanks to a group of concerned parents who wanted the best possible opportunities for their children living with Cerebral Palsy. Today we provide support, education and information to over 12,000 people living with CP; as well as; families, professionals, students, other organizations and community groups. As the “Knowledge Centre for Cerebral Palsy” we offer: • Family and Individual Support: Our part-time support worker is an information and referral specialist who is able to connect people living with, supporting those with CP, with programs and services. In the last year, Tammy van der Kamp, has handled over 200 inquires requesting everything from basic information on CP, to professionals needing complex medical information. • Educational Bursaries: These are awarded to the students living with CP who are planning to pursue post-secondary education or attend institutions of higher learning in the following year. • The Guide to CP: A complementary booklet designed to be a general introduction for anyone interested in cerebral palsy, such as: parents whose child has recently been diagnosed as having CP, or who is suspected of having CP; people with cp wanting basic information, or wishing to provide information to friends and assistants; educators, social service and health professionals; friends, relatives and colleagues of people with CP. • Living with CP: A manual outlining the services available in BC to individuals and families living with this condition – has long been the centrepiece of our information services. • Putting the Puzzle Together: A manual for educators and para-educators on how to include children with all types of disabilities in the so-called regular classroom. This manual has been used as required reading at the Kwantlen University College course for community and classroom support workers. This was being revised since 2005 in conjunction with Kwantlen College, Special Education Teacher Assistance Program, and will be available in few months in both forms as a print and compact disk. • Library: Our library contains books and videos concerning Cerebral Palsy that are useful to parents, professionals, and those living with CP. We acquired new books this year and lent out resources to British Columbian.

Speakers Bureau: Raises public awareness of Cerebral Palsy and works to remove attitudinal barriers experienced by those living with CP through workshops and presentations to schools and community groups. In 2006, our presenter helped organize talks at Kwantlen College University, Steinberg College, UBC Education department, Western Society for Children, West Coast College of Massage Therapy, Burnaby & Richmond Transition fairs, etc. Bridges to the Future: This is a collaborative service for youth aged 15 to 24 with CP and other physical disabilities, and their families to ensure successful transition to adulthood. Website: Our website provides general information about Cerebral Palsy and links people up with others both living with CP and those groups serving those with Cerebral Palsy. Since January 2006, our website has received over 280,000 hits! Roundtable: Our Roundtable Newsletter is available to all members of the Association. It is produced on a quarterly basis to keep members up to date as to what is going on in the Association and the larger disability community. It goes out to over 900 members and other Community Partners. Enquiry CP: Our North American toll-free number i.e. 1-800-663-0004 for parent and individual support, information, resources, and referrals. Did you know? Our organization is 52 years old. It was begun in February 1954 by a concerned group of parents of children with CP. Today we have a membership of 900. Did you know? We provide services to about 12,000 people living with CP in British Columbia. When family members are added to this number, it means that there are over 36000 people in our province whose lives are directly touched by Cerebral Palsy. In addition, the 77 Infant and Child Development Centres, 1700 public schools libraries and 70 public libraries across BC regularly request our literature and resource materials. Did you know? In June 2006, we relocated our office to an accessible space in downtown Vancouver. Did you know? Strategic Planning Committee has been revamping new strategic plans that resulted developing a new mission statement: • To raise awareness of Cerebral Palsy in the community • To assist those living with Cerebral Palsy to reach their maximum potential • To work to see those living with Cerebral Palsy realize their place as equals within a diverse society.

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community is the roots and services make up the branches. Did you know? The revision & printing of Guide to CP booklet and Living with CP manual were completed last summer. Free copies of the Guide are available on request and downloadable from our website. Living with CP manual, will also be available at no cost to parents and those living with CP. Did you know? The Guide to CP booklet is being translated to French, Russian and Punjabi. They will be available from our website very soon. Did you know? In August 2006, the CPABC awarded 3 bursaries at $1000 each to three students living with CP. Did you know? In 2006, the CPABC was generously granted by “WCB Helping Hands” to provide Tammy with a fully equipped accessible workstation for use in our new office. Workstation is included an adjustable desk, a computer and software necessary to meet Tammy’s on-the-job needs. Did you know? In 2006, the CPABC has maintained a strong and successful partnership with Muscular Dystrophy Canada, BC Paraplegic and Spina Bifida to run Bridges to the Future Program which provides support to youth with physical disabilities dealing with the transition from adolescence to adulthood. Did you know? Tammy has been part of the Medical Dental Community Advisory Committee at the UBC Faculty of Medicine, where she lends her exper-

Did you know? The CPABC is like a tree. The CP

tise and provides input on disability issues for the training curriculum. Did you know? Tammy facilitates a teen group for the Surrey School Board, working with teen girls who have chronic medical conditions. Did you know? The CPABC has worked with Muscular Dystrophy Canada to develop, deliver and evaluate their MuscleFacts school education program designed to increase awareness and knowledge about inclusion for students with disability. Did you know? We receive requests for information from as far away as Germany, Sweden, Mexico, Bulgaria, Iran, India, Pakistan, Macedonia and the US. Did you know? We get MANY requests for work placements from students including students living with disabilities from Kwantlen, Capilano, and Douglas College and high schools. Did you know? We run our organization with three part time staff persons: Feri Dehdar (Program Coordinator), Tammy van der Kamp (Family and Individual Support Worker) and Wendy Hawryzki (Administrative Assistant).

As you can see, the CPABC has been very active in 2006. We can always use additional funds to continue our services. Think of us as you draw up your Christmas list. Any size donation allows us to purchase books, print our new updated manuals and booklet, maintain our toll free inquiry line, and maintain our other services. Please see the donation form on the last page. Thank you very much for your support!
who reported smoking daily. The study also found that among couples parenting chronically sick or disabled children, the mother's health declined more relative to the father's. Among couples with a chronically sick or disabled child in 2000, 35% reported that the mother's health deteriorated more than the father's. Almost 31% reported that the father's health had deteriorated more than the mother's. In contrast, 31% of couples with healthy children reported the father's health declined more than the mother's, while 25% reported the mother's health declined more over the six-year period. Note: This study focused on couples who remained married through out the period studied. Though divorce is often a consequence of the stress of parenting sick and disabled children, the study focused on the impact on both mothers and fathers, and on the population of parents who remained married. The study "Children with disabilities and chronic conditions and longer-term parental health" was prepared by Peter Burton, Lynn Lethbridge and Shelly Phipps (Dalhousie University) and is now available free at (http://atlanticresearchdatacentre.dal.ca). The study was prepared as part of the New Realities in Gender Facing Canadian Society Project organized by Family and Labour Studies Division, which features work conducted in Statistics Canada's Research Data Centres.

Study: Children with disabilities and chronic conditions and parental health 1994-2000

This study used data from the National Longitudinal Survey of Children and Youth to examine the implications for the health of parents who have children with a disability or chronic condition. It compared their health status to that of parents of healthy children between 1994 and 2000. The study found that mothers of chronically sick or disabled children were twice as likely to report being in "poor" or "fair" health than those without chronically sick or disabled children. Nearly 11% of these mothers said they were in poor or fair health, compared to just over 5% of mothers without sick or disabled children. There was no observed difference among fathers. The study tracked children aged 6 to 15 in 2000 who had lived with the same married couple throughout the study period. Health was assessed by the "person most knowledgeable of the child" who in 98% of cases was the mother. The study found that mothers parenting chronically sick or disabled children were more likely to report being in poor or fair health than those who smoked daily. This was the case even after taking into account differences in mothers' health at the start of the study as well as their age, education, family income, presence and age of For information about this study, or to enquire about the concepts, other children and smoking habits. methods or data quality of this release, contact Gustave Goldmann Mothers with disabled or chronically sick children were 1.5 times as (613-951-1472), Research Data Centre program. likely to report poor or fair health as mothers with healthy children

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Words from Secretary
Hello everyone: My name is Kim De Wildt and I am happy to have recently joined the Board of Directors of the CPABC! As my background is in Sales and Marketing, I look forward to making a valuable contribution to the CPABC by assisting with PR campaigns to increase awareness about CP throughout BC and to encourage the forging of relationships with agencies, service providers and corporations in our province. I am open to and would love to hear any feedback, ideas and suggestions you may have and can be emailed at info@bccerebralpalsy.com While I may be new to the CPABC, Cerebral Palsy is no stranger to me. Here is my story: My 3 sons were born and raised in beautiful, sunny Durban in South Africa. My youngest son Shayne was diagnosed with Spastic Diaplegia at the age of 6 months and spent the next few years growing up in a country which was lacking the infrastructure to enable those living with either physical or mental disabilities to be integrated into mainstream society. Shayne attended pre-school at Brown’s School in Pinetown, South Africa, (a reputable school for children with special needs) where he received on-site physiotherapy on a daily basis and where he was monitored on a regular basis by an Orthopedic Surgeon. In 1996, with violence on the increase in South Africa, I started thinking about moving to Vancouver and with this in mind called the CPABC to do my homework. I recall speaking with the then President, Halldor Bjarnason, only to discover that not only had segregation been done away with years before, but that there were many programs in place to support and assist Shayne as he grew up in an integrated society. Shayne was 6 years old and ready for school when we moved to Surrey in 1997. What a culture shock for my family!!! Gone was the domestic help I was accustomed to!! Driving on the wrong side of the road in the wrong side

of the car proved to be quite the challenge!! Gone were the enforced “short back and no sides” haircuts or mandatory school uniforms!! And…………..gone was the buggy that empowered Shayne to maintain such poor posture!! Halldor had told me about and referred me to the South Fraser Child Development Centre in Surrey, where we received endless advice, referrals to various specialists and therapists and support for the first few years. Shayne’s needs were assessed and an application for funding was submitted and approved. Shayne was soon provided with a manual wheelchair, and while his 2 older brothers could walk to school everyday without fear of being attacked, arrangements were made for a wheelchair accessible school bus to pick Shayne up every morning and drop him home in the afternoons! Our family is active, loves the outdoors and adores the spectacular scenery on the North Shore, and in March 2000, we moved to North Vancouver and have been living there ever since. Shayne is very well known in our community and at the various recreation centres where he attends Teen evenings, works out in the gym and swims. He goes for horseback riding lessons at Pacific Riding for Developing Abilities in Langley once a week and plays Wheelchair Soccer in West Vancouver every Friday evening. He has a modified Tricycle which he loves to ride when weather permits. Shayne has a great sense of humour and is very friendly and sociable, but most of all he has a very positive attitude!! Our family has been blessed and everyday I am grateful for the people who have supported and assisted us and enriched our lives in so many different ways over the years. In parting, I’d like to leave you with one of my favourite quotes by Mother Teresa, one that to me epitomizes Shayne’s very attitude about life: Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.
families living with children and youth with special needs from birth to nineteen years of age through one-time capital grants. For more Information visit: http://www.vancouverfoundation.bc.ca/GrantInformation/FIF/ DisabilitySupport.shtml or contact: Andria Teather, Program Director Family Independence Fund Andria@vancouverfoundation.bc.ca Tel: 604.688.2204 Jeanette McKay, Program Assistant jeanette@vancouverfoundation.bc.ca Tel: 604.688.2204

Disability Support Funding
Family Independence Fund (FIF)
- The Family Independence Fund is a $30 million dollar fund provided to Vancouver Foundation by Community Living British Columbia [CLBC]. It will assist families living with children or adults who have developmental disabilities. The Fund will support a family’s decision to keep their family member at home by providing grants for expenditures that facilitate the ongoing care of their relative. Children and Youth with Special Needs Supports Fund (CYSN) - The $10 million Children and Youth with Special Needs Fund was established with money from the Ministry of Children and Family Development. It will assist

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NEWS...SITES...NEWS...SITES...NEWS...SITES...NEWS...SITES...

Be cautious with your donations!
It’s a perennial problem that doesn’t seem to go away. One of the most frustrating things we have to deal with at the CPABC is people who “fundraise” using our name in the community. They go door-to-door, shake cans in front of liquor stores, beg on street corners, harangue folks on the phone and generally make a nuisance of themselves. A week doesn’t go by when we are not called by someone complaining about aggressive fundraisers. We would like everyone to know that we never have, and never will take part in any of these types of fund raising activities. If you are ever approached by someone raising funds for “little children with cerebral palsy” don’t hand over any money! You should tell the person you would like to find out some more information and get an address where you can mail a donation. Then you can inquire with the Better Business Bureau @ 604-682-2711 or toll free 1-888-803-1222 to find out if the “charity” is legitimate or not.
Door prizes & light refreshments available.

The Cerebral Palsy Association of BC
Friday, February 2nd, 2007 2 pm to 6 pm 801-409 Granville Street Vancouver Please RSVP by January 26 to (604) 408-9484 or info@bccerebralpalsy.com

CPABC “picks up” funds with clothing
The CPABC relies on our clothing boxes for our fundraising and we are always working to develop new locations for our clothing dropoff boxes. If you or your place of business can host a clothing drop-off box and you are located anywhere in the Lower Mainland, please call Feri at 604.408.9484. Remember, the CPABC partners with the Salvation Army so all of the money raised goes to a non-profit organization. Drop-off box locations in Vancouver:
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HAPPY HOLIDAYS AND BEST WISHES FOR A HAPPY, HEALTHY AND SUCCESSFUL NEW YEAR!

Support the CPABC!
Play Bingo at Boardwalk Gaming Centre

Monday, January 01, 2007
Middlegate Mall Unit 3-7155 Kingsway, Burnaby
For more information visit www.lmcharities.org

Champlain Hts Community Centre Vancouver Aquatic Centre Riley Park Community Centre West End Community Centre Dunbar Community Centre

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C P By Esther Lee A I’ve spent a lot of time searching for God’s plans for my life, and B now I believe that my disability has provided insights into some of the C
meanings of life that many people are not able to appreciate. I haven’t known a life without a disability; My cerebral palsy has played a significant role in influencing my attitudes and perspectives; my disability shapes my personality, emotions, social interaction, and every other aspect of my life. Because of it, I have gone through many hardships. Although my disability colors my life and my whole world, I am the one who gets to pick the colors! I do not let my disability overwhelm me; like everybody else, my life depends on how I handle the challenges that come my way, including fears, hardships, and even happiness. It’s in the process of living that I’ve found myself and a purpose for my being. As a youngster, I attempted to do almost anything that other kids my age did, such as running fast, playing football or basketball, boxing and the like. Although I was interested in various sports, I realized that I could not be like others no matter how hard I tried. Instead of being deterred, I tried to do what I liked within my abilities. It was here that I was able to create a meaningful life for myself. As a kid, I wanted to be a renowned artist when I grew up. I have always loved to draw. I still love to draw*. Also, I loved classical music. I started to play the cello when I was ten years old and sometimes I still play**. If I hadn’t gone to law school, I am sure that I would have been a cellist and an artist. In the past, sometimes, I thought my life was not fair compared to the lives of others. Whenever I have faced unbelievably hard and daunting tasks, I have asked God whether he really created me for any purpose. My faith in God led to an assurance that he did indeed have a purpose for me. I believe that he gave me hardships to make me much stronger. Today, I am more accepting of myself, and I know that diversity comes in a rainbow of colours, and abilities, and disabilities; now I allow my cerebral palsy to be a part of my self-identity. Coming this far and knowing how difficult it is to live with a disability for a whole lifetime, I believe I can help other people with disabilities. I believe that this is one of the true meanings of my life.
* You can see my drawings in the past three volumes of the UBC law Esoteric Magazine (2003~2005). ** I played the cello at my cousin’s wedding with my sister playing the violin and my brother playing the piano. Also, I played it on special occasions at the school during my junior high school years. In June – Aug. 2006, I was a volunteer cellist for special events for people with disabilities at the G.F. Strong Rehabilitation Centre.

CRAIG LANGSTON (President) Burnaby PETER SHIPLEY (Vice President) White Rock JONN OLLDYM Vancouver (Treasurer) KIM DE WILDT N. Vancouver (Secretary) CAROL STINSON Burnaby TRISH MCKAY West Vancouver DON RENAUD Burnaby KENT LOFTSGARD Vancouver TONY KRUSE Burnaby TERREANE DERRICK Vancouver LIZ CALDER Fort St. John

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Thanks to our on going volunteers ….... Tony Kruse Mike Stevens Patricia Furdek Ron Wyant Pamela Liu Ronald Lee Sue Ginley Wesley Kong George Pope

- Esther Lee recently graduated from UBC law school (May 2006). She is striving to become an advocate for people with disabilities. Being interested in helping others with disabilities, she is currently doing volunteer works in various organization, including the Cerebral Palsy Association of
British Columbia.

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By: Halldor K. Bjarnason, Lawyer As a way of cutting costs, people often ask: “Can I write my own will?” “Do I really need to pay the fees a lawyer or notary charges for a will when I know how to write?” Or “If I can get a Wills Kit from that company on the internet for $29.95, why would I want to pay many times that amount for someone else to write my will?” A will can seem very simple, but the potential mistakes can be costly to your estate later on. The more complex your wishes and/or affairs are, the greater the chance that a mistake will be made when drafting your will, unless you have the assistance of someone with specialized knowledge. The rules for executing a legally binding will are fairly simple: 1. 2. 3. It must be in writing (i.e. you can not express your wishes on video tape, on a CD, or an audio tape); It must be dated; and It must be signed by you and witnessed by two adults who are of sound mind and who are not beneficiaries. They must then sign the will in front of you and each other.

These rules are pretty straight forward. Assuming you get past these, there are other rules which, if not considered, can make things really difficult (and expensive) for the people you leave behind. Some of the more typical mistakes in will drafting include: A. Forgetting to revoke a previous will. If you write a new will which gives everything to Aunt Suzie, and the will you wrote last year (and didn’t revoke) gives everything to Brother Michael, who gets all of your stuff? This simple mistake may end up needing to be sorted out in court. B. Not considering what will happen if a person named in the will dies before you. What happens if the person named as your executor dies before you? Have you named an alternate executor? How about your bequests? If you leave everything to your only son, and he dies before you, what do you want to happen to your property? Does it go to his spouse? To his kids? To a favorite charity? If you forget to specify, your wishes may not be followed. C. Using improper or insufficient names for a beneficiary. It’s important to correctly describe where you want your bequest to go. For example, making a gift to “Karen”, if you have two friends and a sister-in-law all named Karen, may be confusing. Similarly, a recent gift in a will to the “Boy Scouts of Canada” led to a court battle between the district council, the provincial office, and the national office, all of whom are legitimately called the “Boy Scouts of Canada”, but act as separate entities. A bit more clarification ensures that your gift will quickly reach its target. D. Being specific on the purpose of the gift. If the gift is being given to a charity, and there’s a specific type of work that you want to support, it is important to be clear in your intentions. For example, if you are giving a gift to BC Children’s Hospital Foundation, but you fail to mention that you really want the money to be used to upgrade the emergency ward, there’s no guarantee that the funds will be used for that purpose. E. Not considering what will happen if the property does not exist at the time of your death. People often make specific bequests to individuals, such as “my 1954 Buick to my child, Leslie”. What happens if, at the time of your death, you have already sold the Buick and purchased a 1934 Ford? What happens if the Buick is sold, and the funds from the sale are sitting in a term deposit? What if the Buick has been demolished, and you haven’t yet bought a new car. It is important to be clear on your intentions. F. Using imprecise language. A vague description of property can lead to confusion and additional legal costs. For example, giving your “favorite gold watch” to your grandson, works well if you only have one watch. But if you have five gold watches, there may be confusion. Similarly, a will which left “all my real property to X”, was deemed by the court to be invalid when the person who made the will did not have at her death, and never had owned, real estate. G. Not giving your executor or trustee enough power. For example, not being able to make final determinations as to the value of property, not being able to make beneficial elections under the Income Tax Act, or not being able to sell assets for cash, can all make the job of administering your estate much more difficult. As well, in writing your own will, you might not be aware of tools, such as trusts or life interests, which can help you to better accomplish your goals. You may also not be fully aware of income tax rules which can affect your bequests. Do you really need a lawyer or notary to help you write your will? It depends. If the person you hire is simply a scribe who writes down your instructions, the end result often won’t be much better than if you use a store bought will kit. On the other hand, a lawyer who understands estate law and who appreciates your situation can help you avoid mistakes which, after your death, can be expensive to your beneficiaries. He or she may also be able to come up with creative approaches that you may not think of yourself. The key with writing a will is to be clear with what you’re trying to accomplish, and then ensuring that those wishes are communicated properly to the folks left behind. For more information on this important topic, visit www.trustlawyers.ca.

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Enquiry CP: 1.800.663.0004
Printed information from CPABC: How to Create a Trust Speak Up! — Advocacy tips BOTOX — Treatment for CP HBOT — Hyperbaric Oxygen Therapy Planning Your Will Equipment Funding Package CSIL Program Information Welcome Kit — CPABC services Revised Living with CP — Resource manual for persons living with CP Guide to CP — CPABC New booklet

Celebrating 52 Years in British Columbia! The Roundtable is the official newsletter of the CPABC. The CPABC and the editor of this newsletter take no responsibility for, nor do they necessarily agree with, the opinions contained in this publication. Contributing Writers: Craig Langston, Kim De Wildt, Feri Dehdar, Halldor Bjarnason, Esther Lee The Roundtable Designer: Feri Dehdar Cerebral Palsy Association of British Columbia 801-409 Granville St. Vancouver, BC V6C 1T2 Phone: 604.408.9484 Toll-Free (Enquiry CP): 1.800.663.0004 Fax: 604.408.9489 Email: info@bccerebralpalsy.com Office Hrs: 9 AM to 5PM, Monday to Thursday

Members with expertise are available for public speaking engagements. Call the office for more details.

We’re on the web: www.bccerebralpalsy.com

Now…more than ever before – your membership will help to

“Realize equality in a diverse society!”
Become a member today!

Name: Address: City: Email Address: Postal Code: Phone No:

Membership: $20 Or whatever you can afford Donation: I would like to make a donation to support the services and programs of the Cerebral Palsy Association of British Columbia. Income tax receipts are only issued for donations of $10 or more, unless requested. $100 $75 $50 $25 My choice: _________ Method of Payment: I have enclosed a cheque payable to the CPABC or: Visa #:________________________________ Expiry Date: _____________________ Name on Card: _________________________ Today’s Date: ____________________ Signature: _____________________________ Please mail to: Cerebral Palsy Association of British Columbia 801– 409 Granville Street, Vancouver, BC V6C 1T2
Charitable Registration Business Number 10690 4204 RR0001