Our 33rd annual conference was held on June 10th with 70 attending.
Dr. Tiffany Winstone
Shelly Van Pelt
Sunday June 18th, 2017
Members and friends of the Scleroderma Association of B.C. and their families joined us in beautiful Stanley Park at the Ceperley picnic shelter near Second Beach. There was a 10 km walk/bike ride around the seawall, and a 30 km bike ride, and then we had a pot luck lunch. There was a group photo op at 9:30am before heading out, with lunch around noon!
Hot Dog Day June 2nd, 2017
We can't think of a better way to start off June Awareness Month than by having Scotiabank support us once again this year and by having hot dogs cooked by Nicole of O'Canadawg in North Vancouver to help us raise money for St. Paul's Hospital Scleroderma research project! Thank you Scotiabank and O’Canadawg!
Smithers Walk – June 4, 2017
Pati had an incredible day as 75 came out to support her and she raised over $8000!
Valemount Walk – June 4th, 2017
Teressa also had an incredible day. 25 came out to support her and she raised approx. $2500!
For Trevor Finch, giving is all in the family March 29th, 2017
Marie and I had the pleasure of meeting Bob Saget after his concert November 11. When Bob heard I was on the Board of Directors of SABC he graciously spent several minutes talking to us about the cause. His sister passed from Systemic Scleroderma several years ago and he has personally raised millions of dollars over the years performing yearly concerts with proceeds going towards Scleroderma Research. Bob also directed a movie based on his sister's experience called "For Hope" that is available on YouTube. Although he act is a little 'blue' to say the least he is a fine gentleman and an excellent advocate for Scleroderma.
Scleroderma Assn of BC: Bob Saget has always been extremely gracious to our members and volunteers, as he has to those who know him in his role of scleroderma goodwill ambassador with @SRFcure, and groups like @SclerodermaSoCal, @SSCanada and www.sclerodemaaware.org just to name a few.
5th Annual Scleroderma Ride For Research
We did it!!!! We surpassed our goal of $40,000.
Rosanne & David Queen were joined by 67 wonderful family and friends Sunday June 19th for the 5th Annual Scleroderma Ride for Research and it didn’t rain!!!! Not a drop!
A peloton of blue included 25 riders that rode the big hill up to UBC, one family of 4 cycled around the Seawall and 32 walkers enjoyed the Stanley Park Seawall. The remainingsupporters organized our pot luck! Those walkers had a special sight; Killer Whales playing just off the shore. Only in Vancouver!
We all joined up for an awesome pot luck lunch. Kevin Keen, one of the genome project researchers from Prince George, talked about how important this funding raising is since there is no longer government funding for rare diseases. Dr. Peirce Wilcox, another of the research team, joined us on the ride.
Again this year, 100% of the funds will be going to the Scleroderma Clinic at St. Paul’s Hospital’s. Previous years’ fundraising has allowed the Genome Project to get started and this will allow for future stages.
I can’t thank everyone enough for their continued support!
Rosanne & David Queen
June 10 -11, 2016
2016 Scleroderma Association of BC (SABC) 32nd AGM/Conference
June 3, 2016 - Friday
A big THANK YOU to Michel Proulx Branch, Manager and his team at Scotiabank, on the North Shore. We had a great time raising awareness and selling hot dogs. Scotiabank donated $5,000 which will go to the ground breaking research project at St. Paul's Hospital's Scleroderma Clinic that is working on the genome project.
Lions Cheque Presentation
We have been very fortunate that the Lions, Burnaby Lougheed Branch, has once again presented SABC with a cheque for $500.00. John Lewis, a Lions member, had scleroderma, and over the years was a SABC Director, as well as a SCC Director. He passed away in October, 2010. John had a vision that patients should be more involved in the education of the students coming out of the universities, so that these young professionals wouldn't just look at their patients as an illness, but could learn from them how to treat the whole person, not just the illness. Each year the SABC has been invited to the annual Lions BBQ, along with many other deserving organizations. For years John would present the SABC with a cheque from the Lions. We are still being invited, and each year a member of the SABC board of directors attends to acknowledge the memory of John and to ensure the Lions that with their help we are still continuing to share awareness of Scleroderma.
June Awareness at the Cloverdale Rodeo, May 23, 2016
At the start for June Awarness, Rosanne & David Queen saw the “scleroderma scrabble video” at the main entrance to Cloverdale Rodeo on Monday May 23rd. Rosanne said “it really is impressive to see it up on such a big screen and even better that tens of thousands would have seen it. They may not know what Scleroderma is but at least they've seen our message.
Creston Health & Wellness Fair, Nov 07 2015.
A fun day with serious thoughts, raising awareness for SCLERODERMA. A free raffle of dish garden was donated by Morris Flowers in Creston. Healthy minded Groups, Organizations and Businesses with new ideas, facts and learning sessions made the Day.
Attended by 5 members of SABC in back BettyKuny,Brigette Michalke and Kathy Evert, in front sitting (with Poppy)Mynrna Kaiser and Carol Shaw
Cheque Presentation to the Scleroderma Clinic
On Friday July 31st, 2015, Rosanne and David Queen were privileged to represent SABC at St. Paul’s Hospital in Vancouver to present a donation of $52,285.00 to the St. Paul’s Hospital Foundation – Scleroderma Clinic. The donation reflects the commitment of SABC to continue the support of the Scleroderma Clinic and specifically the “ground breaking” proof of concept research study that is in the early stages. The financial support this year signifies a major contribution to the second phase of the study. With continued funding for this research study, we expect a solid foundation for future work.
Scleroderma, being a rare disease, does not receive much, if any, funding from governments. This leaves any progress to understand, treat and cure this disease squarely on our shoulders. With continuing support from individuals and corporations for our fundraising events (Scleroderma Ride for Research and Family Skate) and direct donations towards research, SABC is directing those funds to projects that make a difference and would not happen without you.
Dr. James Dunne (Scleroderma Clinic), Amanda Wootton (St. Paul’s Hospital Foundation), Rosanne Queen (President, SABC), David Queen (Treasurer, SABC), Dr. Pearce Wilcox (Scleroderma Clinic)
A major portion of SABC’s contribution to the Scleroderma Clinic this year came from the 4th Annual Scleroderma Ride for Research. This year’s total of $33,255.00 came by substantial support from the Scotia Bank on Lonsdale in North Vancouver, a few generous individuals and countless donations from SABC members, family, friends and others. Support for this event does make a difference, with over $80,000 raised over the last four years, research at the Scleroderma Clinic and exciting, new genome research. SABC looks forward to continuing this event to raise much needed research funding.
Dr. Pearce Wilcox (Scleroderma Clinic), Rosanne Queen (President, SABC), David Queen (Treasurer, SABC), Dr. James Dunne (Scleroderma Clinic)
June 2015 – Scleroderma Awareness Month
Scotiabank Community Day
Two entities that start with “Sc” – Scotiabank and Scleroderma Association of BC came together on Friday June 5th to start off Scleroderma Awareness Month in the Lower Mainland. Early conversations with Larry Clements, branch manager of the Lonsdale - North Vancouver branch, developed into Scotiabank putting on a community day BBQ to raise awareness of the disease.
Members of SABC showed up at Lonsdale and 14th at 10 AM to setup the BBQ and banners in front of the branch. Larry was right in there organizing and setting up the grill, tent, banners and whatever else needed to be done, with the assistance of some of the Scotiabank staff. By 11 AM the hot dogs were on the grill and SABC members were engaging locals on the sidewalk and public plaza. Larry kept at the grill as our members explained what scleroderma is and their personal experiences, either as a patient or having a patient in their lives. There were even a few women that had scleroderma which were unaware of SABC.
After five hours of grilling and talking it was time to call it quits. A fantastically satisfying and rewarding day for everyone involved. Donations for hot dogs totaled over $1,500 with an additional contribution of $5,000 from Scotiabank, all going towards the Scleroderma Ride for Research and the genome research project.
SABC would like to thank Larry and his staff for supporting us and putting out so much effort for the community. We look forward to working with Larry and the staff at the Lonsdale branch again to continue to raise awareness. Come out with us next year to enjoy the day and the people.
2015 SABC AGM & Conference
The Annual General Meeting & Conference was held on Saturday June 13th at the Holiday Inn Express at Metrotown, with as many as 70 SABC members, friends, family, newcomers and special guests. Our President, Rosanne Queen, chaired the meeting and provided her summary of the highlights of SABC’s accomplishments and involvement in community events (of which there were many). The financial position of the association remains strong with general donations for operations and research as well as corporate support on various fronts. The elected board consists of Rosanne Queen, Joan Kelly, Bob Buzza, David Queen, Grant Dustin, Robyn Fox, Neil Mackie, Dianne McPhee, Sue Ashworth, Nadine Morton, Melissa Patton, Michael Queen and Melanie Ross, to serve the members and increase SABC’s profile in the community.
With the business part of the day over we rolled right into the conference and the guest speakers. The organizing committee (Bob with some help) kept on the ball to fill the time slots with interesting and relevant speakers. The Arthritis Society provided Tips and Tools for Managing Chronic Pain and Dr. Ada Man presented New Research Directions in Scleroderma before our local Dr. Jim Dunne updated us on the progress of the Scleroderma Genome Research Project. Before lunch, the Gurmej Kaur Dhanda Memorial Scleroderma Community Service Award was presented to Donna Gervais for her many years of involvement in SABC and the community and the Gurmej Kaur Dhanda Scholarship was presented to Dr. Kun Huang. The afternoon program began with Dr. Huang’s presentation The Contemporary Disease Burden of Systemic Sclerosis followed by, SSC & SSO President, Maureen Sauvé’s perspective on National & Worldwide Scleroderma-Related Progress. The wrap-up for the day was an interactive, question and answer session where the audience could ask the panel general or specific questions about how they deal with the disease.
This was yet another success; with more the 70 people fitting into the space we had expected to only have to accommodate 50. It was a great opportunity for the attendees to gather information, talk amongst each other and be a part of a strong and caring community. Thanks go to the organizers and facilitators throughout the day to make the day what it was. Special thanks go to the corporate supporters; Bayer, that made video recording of Maureen’s talk and the panel discussion possible (watch for them becoming available on the website) and Actelion, which made it possible for representatives from out of the lower mainland to attend the conference.
Watch for next year’s date and plan to attend.
4th Annual Scleroderma Ride for Research
This year’s Scleroderma Ride for Research, on Sunday June 21st, spread scleroderma blue across Vancouver and surpassed yet another ambitious fundraising goal. The nearly 50 people enjoyed blue skies and sunshine (for a change) as the participants walk and rode one of the routes. Seventeen riders headed over the Burrard Street Bridge (thankfully not closed for a massive yoga session), along the Kitsilano beaches to rise above the water at Spanish Banks to UBC and then returned via Coal Harbour. The other riders and walkers took to the seawall and trails of Stanley Park, to enjoy the sun and the stiff breeze that picked up off of English Bay. The support team, which stayed at the Ceperley Park pavilion, made sure that food and refreshments were ready (and stayed on the tables) for everyone for when they returned for the potluck lunch.
The success of this event is only possible by those that make it important to them and the people that they care about that have this terrible disease. We encourage our members to engage in spreading the word with your friends and family. Our purpose is raise the awareness of scleroderma, while building our community and raising much needed funds for research. In discussions with the research doctors involved in the genome study, the competition for medical research of rare diseases is vicious and movement forward is Patient-driven research. In taking the initiative to create opportunities for scleroderma research this year’s ride raised over $33,000, with 100% going to the second stage of the genome research study. Thank you to everyone that supported this event and cause.
Put Sunday June 19th on the calendar for next year’s ride, and since it is Fathers’ Day plan to make it a family event.
Rosanne & David Queen
Vancouver International Jazz Festival
At the beginning of June, 2015, Scleroderma Awareness Month, SABC was approached with an advertising opportunity to include a video in the advertising mix on the large screen at the Vancouver International Jazz Festival main stage. This was an opening to promote the disease to the masses at the festival during June 18th – 21st & 27th – 28th, to at least get the word scleroderma out into the public. Scrambling to seize the chance, we engaged SSC to develop a 15 second video to put the message out there. With a concerted effort on every front the video came together and Scleroderma Scrabble came to life. We appreciate the support of SSC and the timely and focused effort of their creative team to make the video available to SABC.
May 26, 2016 - 1:30-3:30 pm
Lung Health Support Group Meeting
St. Paul's Hospital, 1081 Burrard Street, Vancouver, B.C.
Location: St. Paul's Hospital, 1080 Burrard Street Vancouver Providence Tower, 4th Floor Cafeteria, Dining Room 1-2
Topic: Dealing with Chronic Pain OR Updates in Research (to be determined) Free.
June 5, 2015
1357 Lonsdale, N. Van.
ScotiaBank honours Scleroderma Awareness Month – Booth & BBQ! The SABC is partnering with ScotiaBank on June 5th to raise scleroderma awareness & funds for research. We are seeking volunteers for our booth, fundraisers for the event and visitors as well! ScotiaBank staff are hosting a BBQ for us!
June 12, 2015
SABC No-Host Dinner & Social –
Cactus Club Café – Private Dining Room 4653 Kingsway, Burnaby, BC (across from Metrotown Mall). Our annual pre-conference dinner and social is always fun. Friends and family are welcome, too!. Help us let the restaurant know how many to expect by marking your registration form if you hope to join us – and let us know if you are bringing a friend!
June 13, 2015
8:30-9:15 am Registration
9:15-9:45 am Welcome/AGM
12:15-1:15 pm hosted lunch
4:30 pm Adjournment
SABC 31st Annual Conference & AGM Capilano Room - Holiday Inn Express Vancouver/Metrotown Hotel 4405 Central Boulevard, Burnaby, BC (1 block from Metrotown Skytrain Station) Our program offerings include practical information for those living with scleroderma, updates on promising research developments, including an address from one patient's perspective by Scleroderma Society of Canada President Maureen Sauvé, and an interactive audience participation session with a panel of scleroderma volunteers.
June 13, 2015
Dinner (No-Host) & Social
"Reflect" Restaurant, 3rd Floor, Hilton Vancouver Metrotown Hotel 6083 McKay Avenue, Burnaby, BC (site of 2012 SSC National Conference) Please let our office know if you hope to attend, so that we can reserve a seat for you!
June 21, 2015
4th Annual Scleroderma Ride for Research
Ceperley Park Picnic Area, Second Beach, Stanley Park, Vancouver, B.C. Members, family and friends are invited to join hosts Rosanne and David Queen in their 4th annual Scleroderma Ride for Research. Whether you ride, walk or "scoot" there is a route that will suit! All are welcome at a potluck lunch to celebrate.
9:45 am Annual Group Photo
10 am Walk, Scoot or Ride
11:30 Pot Luck Picnic
June 29, 2015
World Scleroderma Awareness Day
July 28, 2015
Lung Health Support Group Meeting St. Paul's Hospital, 1081 Burrard Street, Vancouver, B.C. Location: St. Paul's Hospital, 1080 Burrard Street Vancouver
Sept 17-19, 2015
16th Annual Scleroderma Society of Canada Conference. Hosted by the Scleroderma Society of Ontario in association with the Scleroderma Society of Canada.
Sept 22, 2015
Lung Health Support Group Meeting
St. Paul's Hospital, 1081 Burrard Street, Vancouver, B.C.
Location: St. Paul's Hospital, 1080 Burrard Street Vancouver
October 2015 (date TBA)
7th Annual UBC "Allies in Health" Community & Patient Fair Our volunteers will interact with health sciences students from a wide range of disciplines.
November 24, 2015
SAVE THE DATES in 2016: Jan 19, March 8, May 10
(but check for updates)
Lung Health Support Group Meeting St. Paul's Hospital, 1081 Burrard Street, Vancouver, B.C. Location: St. Paul's Hospital, 1080 Burrard Street Vancouver Providence Tower, 4th Floor Cafeteria, Dining Room 1-2 (to be confirmed) Free. Please pre-register with Fran by calling 604.806.8818 (press 2).
November 29, 2015
11:30 am - 1:30 pm
SABC Christmas Luncheon
Check out the details in our newsletter or contact Joan at 604-940-9343 or by email to email@example.com.
Please get on the list by November 25th.
Cactus Club Restaurant - Private Dining Room
4653 Kingsway, Burnaby BC V5H 2B3 · 604-431-8448(across from Metrotown Mall) MAP http://goo.gl/RKHzKb
Members, family and friends are invited to get into the holiday spirit by attending our annual "no-host" Christmas luncheon and social.