Spina Bifida and Hydrocephalus Association of Canada

Welcome our NEW 2005-2006 SBHAC Board of Directors:

President: Lorelei Fletcher

Past President: Colleen Talbot
Vice President: Gene Layton
Treasurer: Liz Spencer
Secretary: Ashok Bhargava
Board Members:
Wendy Sol, Mel Murray,
Linda Randall, Randall Prime,
Sarah Williams, Ken Stickle,
Linda Renaut, Brent Buss,
Roxanne Ulanicki
SBHAC National Staff:
Executive Director: Andrea Salmon
Marketing & Fund Development: Mona Rémillard

President’s Message

2005 was a good year for SBHAC. SBHAC was able to achieve a modest surplus in 2004/2005, and our goal is to exceed this for the 2005/2006 fiscial year.
The Communication, Energy and Paperworkers (CEP) Union Regions continue to be major supporters of the Association. Thank you to CEP Members of Manitoba Area Council, Ontario Region, Dryden Local 105, Alberta Area Council, Fort McMurray Local 7, and Saskatchewan Area Council who held golf tournaments throughout the summer. SBHAC appreciates the CEP National Women’s Committee who distributed our Daisy Seed Packages at the CEP National Women’s Conference in Moncton, NB from October 16th to 18th, 2005 in all of the delegate packages. Gate collection by Local Union Members of Local 599-0 at their place of employment was also undertaken, thank you Ken Stickle for showing up really early! The National CEP Convention takes place next year in October 2006.
The 2005 AGM and Conference held in Surrey BC in October was enjoyed by all who attended, this was a time to enjoy the speakers, and to see old friends and to meet new ones. It was great to see so many young people with SB/H out and enjoying themselves. This was a time and an example of how we can all work together for the benefit of those whose lives are affected by spina bifida and/or hydrocephalus, it was a time to share and a time to take home stories and information learned while at the Conference. Thank you to SBHABC for organizing and hosting the Conference, your hospitality, and hard work in organizing such a wonderful event was greatly appreciated.

There were Member Association presentations to SBHAC at the AGM and SBHAC appreciates the support given by all who donate. One special presentation of $100.00 came from Mrs. Bernice Talbot – a grandmother who sent out a challenge to all grandparents to do the same. Thank you Bernice for that challenge and your donation.

The 2006 AGM/Conference will be held at the Fantasy Land Hotel at the West Edmonton Mall in Edmonton, September 15-17, 2006. A website Takeaction2006.ca has been set up. This event is being hosted by the Spina Bifida and Hydrocephalus Association of Northern Alberta.
I would once again like to take this opportunity to thank all the SBHAC Board members who give of their time and expertise in helping to make SBHAC what it is. I would also like to welcome the new Board members who joined us at the AGM in October. It was a pleasure working with everyone in 2005, and I look forward to working with each of you this year. I would like to thank Andrea Salmon and Mona Rémillard for all the hard work and dedication that they continue to give to SBHAC, it is all greatly appreciated. Thanks also to all the volunteers across Canada, we could not accomplish what we do each year without your help and dedication.

I wish you all the best in 2006.
Best wishes
Lorelei Fletcher, SBHAC President

Spina Bifida and Hydrocephalus Conference – October 2005

Submitted by Colleen Talbot, SBHABC

The Spina Bifida and Hydrocephalus Association of British Columbia was pleased to host the SBHAC Annual General Meeting in conjunction with an educational conference. Approximately 130 participants, with a large number of teen and young adults, had an opportunity to socialize, network and attend sessions over the two-day conference.

The Thursday evening Opening Reception featured some of our more artistically and musically talented members. Kimberley Anderson entertained the group with harp music to begin the evening. Karen Autio, read from her recently published book Second Watch and was followed by a piano music recital by Stephen Honisch. Ashok Bhargava ended the presentations with reading from his book of poetry Mirror of Dreams. Paintings by Neil Bhargava were displayed during the conference.
Guest speakers started sessions each day. On Friday, Sam Sullivan, founder of many groups that assist people with disabilities, talked about his journey from the time a skiing accident left him a quadriplegic in 1979 to 2005 as he runs his campaign to become Mayor of Vancouver. In his message, he encourages everyone to set goals and to work gradually towards them.

On Saturday, the day started with a very entertaining presentation by Chris Johnson, “Dr. Laugh.” He emphasized creating environments that celebrate and foster good humour, respect, caring and nurturing. Chris is the author of Every Coach’s Planner and Idea Book.

On both days, the general educational sessions focused on medical information as well as some learning and social issues. On Friday afternoon and Saturday morning, separate sessions for teens and young adults featured speakers about employment, transition issues, managing attendant care and independent living.
Friday night’s banquet and dance was well attended. DJ Mike Walters kept the group well entertained and by the end of the evening, quite exhausted. It was difficult to find an open spot on the dance floor!

Many thanks to everyone who donated items for the Silent Auction and Blind Auction. Their generosity, and that of those people who purchased the items, resulted in almost $3,000.00 going directly to the SBHAC Bursary Fund. The following sponsors assisted with the conference: BC Government (BCLC), BC Children’s Hospital Foundation, Sick Kids Foundation, Valley Orthocare, Allard Sand and Gravel, Hyack Air, Mentor and the Aggregate Producers of BC.

Conference Comments:

“I want to congratulate you and your Board of Directors for a very successful conference. It was well organized and well attended. Your guest speakers were excellent, providing education and support to the families and children and of course, your social events were lots of fun.”
– Susan Inwood, RN, MN The Hospital for Sick Children

“Congratulations to the Association and each of the presenters for a most successful conference. It was wonderful to hear about the latest and greatest, as well as the tried and true procedures being used at Children’s Spinal Cord Clinic. Some of this information was new to me. We are blessed to have such dedicated doctors attending our children. I enjoyed all of the presenters; each of them allowed an insight into their personal expertise and experience that we would not have access to in any other forum.

I was especially happy that Sam attended. He gained information from the doctors and youth sessions that was not only interesting and intriguing but positive, validating and comforting as well. It was a fabulous socializing opportunity; he connected with peers on a meaningful basis that is sometimes lacking in other environments.
I’m also grateful for the time and space carved out of routine, to laugh a little, commiserate and console, greet old friends and make new ones, share stories and enter into that exhilarating, revitalizing feeling of freedom to wallow in the comfort of like souls”
– Donna Piercey

“Thank you to SBHAC Conference Committee for inviting me to do a reading from my new historical novel Second Watch at the Welcoming Reception. Second Watch is the story of 11-year-old Sara who navigates a challenging time at home in the Finnish immigrant community in Port Arthur, Ontario, as she seeks passage on the majestic steamship Empress of Ireland. The 1914 tragedy of this Canadian Pacific passenger ship provides a historical basis for this compelling tale of hardship and hope, faith and family. Learn more at www.karenautio.com. The audience at the reading was fabulous, and many conference attendees purchased copies. A portion of the proceeds from sales of Second Watch was donated to SBHAC. There was one young reader who read all but the last few chapters of my book before the conference was even over!”
– Karen Autio

Conference Pics:

Mel Murray Gene Layton Lori Froc Susan Inwood
Mrytle Arnold Judy Haddy Monica Sneath, Gene Layton, Ashok Bhargava

The Mind of God for Jonathan Elder

Arrows pointing down
Pin us to despair
Press us to musty earth thrashing
Like spike unwilling specimens
Our questions at the lab man
Our questions
Echo over stainless steel
And go unanswered.
But we were made for arrows
And Jonathan was made for arrows.
We are pinioned forced to stillness
To embrace the dusty sweetness
Of an earth that cannot hold us
To trust that were there answers
We would not understand them.
His lab white coat is fragrant
And covered all with pockets
To enwomb yes tiny specimens
We are all tiny specimens
And once he takes our arrows out
We leave the helpless ground
Drift into a pocket
In the scented smock
The happy mind of God.

Dave Elder – Jonathan Elder – Catriona Lemay-Doan

This poem was written 20 years ago by Guy Fuller, a former English Teacher at Holy Cross High School in Saskatoon. He scribed this poetic wisdom on a crumpled piece of paper, and handed it to me as a response to my contradicting feelings of expectant joy and extreme sorrow. It changed my life for the better.

September marks the Feast Day for the Lady of Sorrow. September 15, 1985 marked the birthday of my first child Jonathan. It was also the day the “Lab man” challenged me with the opportunity to grow in faith.  Any time I need a little perspective on life I look to Jonathan. Any time I am feeling sorry for myself, I look to Jonathan. Any time I need to smile, I look to Jonathan. Any time I feel “pinned by arrows,” I look to Jonathan.  Jon has brought an incredible brightness into my life, and whether you people know it or not, he has done the same for you and the many people before you. The poem remains framed in Jon’s room and in my mind.

Oh, and by the way, to Jeff my youngest, I love you son.

Dave Elder

SBHAC Daisy Seed Packages:

SBHAC has daisy seed packages available at only $2.00 each. This year our Appeal Campaign is “GROW WITH US.” SBHAC adopted the daisy as its national flower. To our members across Canada, you can order your daisy seeds simply by calling 1-800-565-9488. A great gift idea!

Challenge to Grandparents

Bernice Talbot challenges them to match, or surpass her $100.00 donation to SBHAC. Bernice Talbot, would like to challenge all other grandparents to support the Spina Bifida and Hydrocephalus Association of Canada in honour of their grandchildren and others born with spina bifida and/or hydrocephalus.

Daisy Luncheon

Grand Chapter of Manitoba Order of the Eastern Star
Submitted by Mona Rémillard

I had the pleasure in attending and speaking at the Daisy Luncheon on November 19th, 2005 at St. Mary’s Anglican Church in Winnipeg. Also attending was Lisa Wilton and her son Matthew Wilton of the Spina Bifida and Hydrocephalus Association of Manitoba. Matthew was presented with a “cuddly critter” by Worthy Grand Matron Monelle Oman. Lunch was served at 11:00 am and 12:30 pm with an attendance of over 200. Proceeds will be presented at their Annual General Meeting in May 2006. The dinner tables were beautifully decorated with daisies. Well over 200 people attended the luncheon. I would like to express my gratitude and thanks to all the volunteers who organized this wonderful luncheon. A special thank you to Myrna Fitchett, Committee Chair. I would also like to thank Worthy Grand Matron, Monelle Oman, and Worthy Grand Patron Alvin Stanger for choosing SBHAC as their charity of choice.

Across the Country News:

Colleen Talbot

Congratulations to Colleen Talbot:
At the 9th Annual Spirit of Community Awards hosted by the Society for Community Development at the Inlet Theatre in Port Moody, Colleen was awarded the Community Volunteerism Award!

“It’s not the strongest of the species who survive, nor the most intelligent, but the ones most responsive to change.” – Charles Darwin

CEP – Manitoba | Area Council

3rd Annual Spina Bifida and Hydrocephalus Charity Golf Tournament took place on September 11, 2005 at the Kingswood Golf and Country Club. The weather was beautiful for this time of year – 30+ degrees. Thank you to all the wonderful volunteers who dedicate their time every year! A grand total of $7,533.79 was raised this year! Plans are well underway for next year.

CEP – Dryden | Area Council
3rd Annual Charity Golf Tournament
September 5, 2005 at the Evergreen Golf Course
Andrea Salmon, presenting SBHAC Trophy to Nick Chasowy, President, CEP Local 105.

Sommers & Roth, PC
Barristers & Solicitors
268 Avenue Road, Toronto, ON M4V 2G7

Our law firm is recognized across Canada as a leader in the field of medical malpractice. We have successfully represented children with spina bifida and their families for many years. We understand that most people have very limited or no financial resources to contribute to the cost of litigation. If we do not win a monetary award for our client, we do not charge for our services.

For FREE consultation call: 800-961-7356; 416-961-1212; fax 416-961-2827 or visit our website www.sommersandroth.com .

CEP – Saskatchewan | Area Council

September 24th, 2005 at the Lynbrook Golf and Country Club, Moose Jaw, SK

Debbie Firth, Donnie MacNeil, Brian Ingjaldson, Steven Kerrigan with Wendy Sol (second from the right) presenting the trophy on behalf of SBHAC. BEST FOURSOME
Wendy Sol, SBHAC Board Member accepting on behalf of SBHAC together with Debbie Firth, Doug Anderson, Rhoda Cossar and Gord Steinger – just to name a few of those who organized the tournament

A total of $7,615.16 was raised. This is the first golf tournament in support of SBHAC, and thank you to all the organizers and volunteers. We look forward to next year’s event.


Correction in Summer Update Edition

CEP Local 707 | Fort McMurray, Alberta

SBHAC reported that Karla MacNeil accepted the cheque on SBHAC’s behalf. In fact, Chantelle Kidd accepted the cheque on our behalf. Our apologies.
Spina Bifida and Hydrocephalus Association of Canada
977-167 Lombard Avenue
Winnipeg, Manitoba R3B 0V3