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Words do not convey the depth of our appreciation of Harv and Dhar Dhanda, their family
and friends. Attendance was outstanding at the Grandparents Day Gala! The ambience was
perfect - fun, good humored camaraderie and great food combined for a most enjoyable and
successful luncheon - truly a fun’raiser! The luncheon was held in loving memory of Mom,
Gurmej K. Dhanda, and in honor of all grandparents. Their detailed preparations for such a
large gathering (200) and their energy along with that of their crew, resulted in raising funds
of $14,000+! As requested, the funds will go to assist in operation of the national scleroderma
database - a vital tool aiding every aspect of scleroderma research.
| SABC members with our 3j’s dahlia |
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| Making It Happen |
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| l-r rear - Eagles’ Spencer Bennett, Cole Gelley, Tyler Morley |
| Mid- Daisy Byrne, Dee-Ann McBride, Denise Kostash, Anita Attwal, |
| Front- Samantha McBride |
Spencer Skate for Scleroderma
Please mark April 11th on your 2010 calendar (12:30 – 2:00pm) as our tentative date for our annual family Skate. This will be the 6th Spencer Skate for Scleroderma - with date confirmation to appear on this site immediately it is obtained.
Please join us in our effort to beat last years’ great attendance. Remembering Irene Spencer, for whom this memorial skate is named, we offer another rousing romp on the rink, an afternoon of fun,fraternity and face painting – with prizes galore!
(No need to freeze! Come and support the event, keeping warm in the lounge where windows offer a great view of the shenanigans). Compete in the pledge drive for three great prizes - or join us by donation at the Richmond rinks Forum, 14140 Triangle road/at Steveston Highway.
For information or forms contact:
Denise dkostash@sandman.ca or Robyn sclerodermabc@yahoo.ca
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On October 29 2009 the Scleroderma Association of B.C. was priveledge to take part in the first
annual health fair, held at the Life Science Centre on the U.B.C. campus. The purpose of the fair was to connect community organizations and individuals involved in health service delivery and the education of health professionals with faculty, staff and students from health science programs at the University of British Columbia. The fair was designed to promote meaningful partnerships and recognize the expertise and role of the community in the health of Canadians and the education of their health professionals.
John Lewis, a patient himself, and a board member for the Canadian Scleroderma Association had an opportunity to share his own experience while living with Scleroderma. Discussion rooms were set up for
pre-scheduled times where expert panel sessions were held. There were several students interested in this forum as the students were studying Scleroderma that specific week at U.B.C.
The community organizing the event did a fabulous job. Our parking was paid for, lunch, snacks and beverages were supplied, and the venue was designed to accommodate all the exibators and their specific needs.
Thank you to John Lewis, Dianne McPhee, Yvette Betz, Hartmut Krieger, Teresa Lamont, Donna Gervais and Tom Mueller for sharing their experiences with the students and faculty members. We were fortunate to have these individuals involved in our booth as all have different appearances but share the same illness. John brought his power point of hands and faces of patients for the students to see. Many students had never heard of the illness prior to that week, so interest was keen.
Sometimes it is hard living with an illness that many don’t understand. This fair is the beginning of something very positive. Organizations, Medical students and Faculty will all benefit from the open communication. Hopefully we will once again be able to share our stories next year at this event.
Be well
Dianne McPhee |
| A Day at the Fair |
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| Yvette Betz, Dianne McPhee, Theresa Learmonth |
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| L. Harmut Krieger& Donna Gervais |
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| Creating Student Awareness |
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| Thank you, John! |
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| Helping SABC to ‘Connect’! |
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2009 IN REVIEW
SABC Annual Report to the Scleroderma Society of Canada
By Robyn Fox, SABC. ……. (as presented at the 2009 Winnipeg national conference)
This year, the BC Association proudly celebrated its 25th year of providing support to its members, raising public awareness, and
funds to support the work of the St. Paul’s Hospital Scleroderma Clinic in Vancouver, scleroderma research across Canada, and the
work of the Scleroderma Society of Canada.
Over the winter, BC took a modern leap by adding the CanadaHelps on-line donation button (as recommended by the SSC) to our
webpage, www.sclerodermabc.ca and is very pleased with the results. Thanks to the instigation of a phone tree involving our Board
members, community contacts and other volunteers, and publicity in the quarterly newsletter, BC was able to achieve a strong per
capita return of the Scleroderma Patient Surveys. Bob Buzza has been working with the CSRG to categorize and evaluate the written
commentary provided by many of the survey participants (see pages 3/4/5)
Early in the spring, preparations began for our fifth annual skating fundraiser. We joined Facebook at
www.facebook.com/scleroderma.bc, and hope to make it a more useful tool as the year progresses. This was suggested from an
innovative partnership with Kwantlen University College’s Media Relations class, who as a term project took on the advertising and
publicity for Spencer Skate for Scleroderma. Their 58 volunteer hours resulted in the largest attendance at Skate fundraiser to date,
with the added benefit of raising more awareness through the publicity they were able to generate. Member Scott Mudry created a
scleroderma awareness campaign, “Hugs for Hope”, and has been collecting hugs and holding events across BC, garnering support
along the way. Dr. Jim Dunne shared the news that the BC Scleroderma Clinic had received approval to participate in the DETECT
study on management of early pulmonary hypertension in Scleroderma, and in the SCOT study, comparing cyclophosphamide versus
bone marrow transplant.
In June, the 25th Annual SABC AGM was held in New Westminster, with presentations by Dr. Marvin Fritzler of Calgary and Dr. J.
Lee Nelson of Seattle, and Kevin Keen joining them for a lively question and answer period. SABC co-founders Joan Kelly and
Jeannette Stach were honoured for their quarter century of service, and a bench was dedicated at the Queen’s Park children’s
playground in honour of the 102 members who have passed since June 2001. A strong and varied Board of Directors was elected, and
we look forward to the year ahead with fresh faces and new ideas. Also in June, member Tammy Raynor organized a successful miniconference
in Northern BC, which will become an annual event.
Summer began with the arrival in late June of Valerie Hebert and Stephane Marchand, beginning the western portion of their Across
Canada For Scleroderma cycle ride in honour of Val’s father, who is battling scleroderma. Greeted at the airport, and well rested at
local Sandman Inns, this charming couple departed July 1st for their trip to Montreal, arriving on August 21st for Mr. Hebert’s
birthday. We wish him well.
In September, long time supporters, the Dhanda family will hold a Grandparents Day Gala Luncheon fundraiser, in memory of Dr.
Dhanda’s mother, Gurmej. And in late October, the University of British Columbia is hosting the first annual “Health Education Fair”
giving scleroderma patients an opportunity to “educate” medical students and professionals, and community health workers about the
nature of scleroderma. Thanks to UBC and John Lewis whose efforts created this opportunity for ‘scleroderma’exposure.
With Robyn Fox becoming Secretary for the BC group, and Joan Kelly remaining active as newsletter editor and community/public
relations contact, please update the email addresses:
For administrative purposes, Robyn: sclerodermabc@yahoo.ca
For newsletter or community public relations, Joan: scleroderma@telus.net
WISHING YOU ALL A VERY
MERRY CHRISTMAS & A HEALTHY NEW YEAR! |
