Lupus Foundation of Ontario
From the President: Patricia Leece
Year In Review
2011
The Lupus Foundation of Ontario is a voluntary organization dedicated to improving the lives of
people living with lupus through advocacy, education, public awareness, support and research.
Lupus Foundation of Ontario has been able to bring great public awareness to a little known disease
through a network of unpaid volunteers. We are grateful for their work and commitment on our
behalf.
ADVOCACY
Attended New Year’s Levee hosted by MP Rob Nicholson,
Minister of Justice, in
Niagara Falls
Information sent to Chief Medical Officers regarding the dangers of tanning beds and UV rays
– and their connection to lupus
Delivered letter appeals for public awareness, research funding, easier access to disability
pensions; health education programmes for physicians, nurses and other healthcare providers, along
with information packages to Members of Parliament in Ontario
Met with MPP Kim Craitor for his continued support at various times throughout the year
Researched and advocated against the mandating of fluorescent lighting, DECT telephones, wind turbines, dirty power, etc., (Information supplied by Magda Havas, PhD, University of Trent.)
Requested independent studies to be undertaken to focus on health-related issues pertaining to Wi
Fi and smart meter technologies.
Continued partnership with Healthy Living, Niagara Public Health Department and Leave a
Legacy
Participated in 8 surveys for topics ranging from Funding for Non-Profits, to
Availability of Health Care
Networked with Lupus Syamsi Dhuha, Indonesia; and Lupus organizations throughout the United
States, Europe, Australia, and the Philippines
Supported a world-wide initiative for governmental financial assistance for medications and
various prescribed treatments for those diagnosed with lupus
Attended a training session (May 2011) organized by dermatologists at Niagara Falls GNGH. Our volunteers answered questions posed by 50 medical and nursing students. Each student received
a package containing l5 booklets on various lupus-related topics, generously supplied by USA
National Institutes of Health.
Participated in surveys to determine the impact of the economic downturn on our daily operations
Completed questionnaires for the Accessibility Directorate of Ontario to assist in developing criteria for accessible parking, Urban Braille, etc.
Attended a Seminar where Dr. Devra Davis spoke of the real concerns about DECT phones and cell phone usage
PUBLIC AWARENESS
Sent 444 letters to every City, Town, Township, Village, Municipality, County and community throughout Ontario to request “October is Lupus Awareness Month” Proclamations to be read during Council meetings. Brochures and a request for flag raisings were
also included. The response was overwhelmingly favourable: Mayors wrote letters to Premier
McGuinty requesting assistance for families affected by lupus. Proclamations were read and
telecast over Cable networks;
the Proclamations were added to municipal websites for viewing and the
brochures were placed in lobbies for the public.
“Walk for Lupus” took place in Welland. Over 1000 posters were distributed, 400 faxes were
sent and schools were invited to join us.
Niagara Parks Commission granted our request to illuminate the Canadian Horseshoe Falls in
the lupus colours of red/white to honour “World Lupus Day – May l0th”. This honour appeared on the
website of Julian Lennon, whose childhood friend had recently lost her battle with lupus. Julian’s
friend was the inspiration for “Lucy in the Sky with Diamonds”.
Cathy Hayes, Board Member, prepared an Information Wall at her doctor’s office to educate
about the signs and symptoms that could be lupus
Hospital for Special Surgery – New York City, sent literature that was distributed to teens
who had been diagnosed with lupus
Invited to the ArcelorMittal Health & Wellness Fair that constantly surpasses expectations.
Over 3000 people attend this two-day Fair in Hamilton.
Worked in various Niagara communities with media contacts (SNAP, Cable TV) and print media. Literature was distributed to city officials and local libraries, drug stores, hospitals and
clinics
Placed advertisements in community publications (circulation 1,450,000+)
Participated in the Brock University Health Fair. A volunteer attended this year and offered
a first-hand account of her son’s battle with lupus.
Arranged for newspaper articles throughout Ontario for flag raisings and personal interest stories
Networked with service groups such as Lioness, Lions, Women’s Institutes and
Kinsmen – providing literature. We are grateful for their financial contributions.
Participated in community events including fundraising activities such as golf tournaments, a
curling bonspiel, bake sales, dress-down days, bazaars, etc. Many donors are requesting donations
to be sent to our Foundation to honour their wedding, anniversary, birthdays and other special
events in their lives.
Participated in Ridgeway Summer Festival, distributed 100 brochures and information and
raised funds from a Bizarre Bazaar
Facilitated presentations at 8 public schools, 10 high schools and 3 colleges
Distributed 12080 copies of “Introduction to Lupus” and bookmarks throughout
Ontario utilizing a network of community volunteers
Distributed information packages semi-annually to Lupus Clinics in Ontario
Distributed information packages to new physicians in the Niagara Region
Recruited book reviewers for KIDZ Educational project
Cure 4 Lupus, USA based, invited LFO to place our support group contacts on their world-wide website
Governor General Award – request submitted posthumously for a founding member, Cornelia
Heyermans – who worked diligently towards a better future for all lupus people. (Currently in the
active file for consideration.)
LCBO contributions totalled $8977.22 from their Coin Box Programme throughout Ontario. We were able to supply headers along with brochures to each of the hundreds of LCBO outlets.
RESEARCH
Donated $10,000.00 to TW Hospital in January 2011
Donated $50,000.00 for a Lupus Fellow at Hospital for Sick Kids
Donated $2,500.00 for a Fellowship to honour Dr. Murray Urowitz for his years of outstanding contribution and commitment to the lupus movement
VOLUNTEER MANAGEMENT
Youth involved as volunteers and participants in NIAGARA KIDZ WALK
Worked with 111 volunteers for literature distribution, fundraising, public awareness and Board
WALK A BLOCK
Conducted walks in 4 locations
“Walk for Lupus” in Welland focused on the need for earlier diagnosis of lupus in children and adolescents
Involved walkers and raised $3,4l4.37
SUPPORT
Maintained office presence 4 days per week providing
information and telephone support to members and the public
Maintained 1-800 telephone to enhance accessibility
Held information sessions/support group meetings in 7 locations
Held AGM in October
Attended Rheumatology Day at SickKids Hospital in October
Responded to 7933 e-mails re information, support and networking
950,066 web site hits
Produced and distributed 1,400 copies of semi-annual Lupus Talk newsletter
Expanded educational library of books and pamphlets, which now include Lyme Disease,
Ankylosing Spondylitis and West Nile Virus along with secondary autoimmune illnesses
Engaged in KIDZ Educational Project to determine existing literature for pediatric lupus patients; completed Phase III
Provided listening support to people in need
Maintained contacts with and gathered information from National Institutes of Health, United
States Health Services Institutes, Lupus Foundation of America, Lupus Alliance of America, Lupus Research Institute and Cure4Lupus
Arranged for SunVeil clothing brochures to be given to medical and nursing students
NOTE OF THANKS
As always, our grateful thanks are sent to each person who has contributed to the success of Lupus
Foundation of Ontario.
Whether as a volunteer, a financial supporter, a Board Member, a driver, or someone who assists
with
the countless unpaid tasks throughout the year – your help is invaluable.
We all share one goal – that the secret to the mystery of lupus is unlocked. That the pain
disappears;
that no child ever receives a diagnosis of lupus and the knowledge that their kidneys are failing.
Stuart Heard, Director of Toronto General & Western Hospital Foundation, wrote in his letter to us: “Your donation will support the research training of post-doctoral fellows in the field of lupus.
It enables Dr. Urowitz to continue his excellence in teaching to create brilliant
future talented researchers and doctors who will help make a difference in a better quality of
life for those living with lupus.”
YOU made it happen!!
KATE SHERWOOD – ‘VOLUNTEER OF THE YEAR’ – Milton
Kate Sherwood, family and friends, receive a huge round of applause. When Kate lost her dear
friend, Milly, to lupus she became driven to make a difference. Each year, the Annual Milly Spiel
generates funds for research to help define a cause and locate a cure for lupus. Each year, they
surpass the sum raised the previous year. They are all a huge part of who we are and what we do –
Thank you!
YEARLY DONORS
There are many who contribute prizes, Auction items and in-kind donations that we do not recognize
publicly. Making a difference are: Mayor Diodati and the City of Niagara Falls, Niagara Parks
Commission, Marineland, the Leece Family, the Aikenhead Family, Cathy Hayes, Answers Computer
Services, Angelo Rossi Galleria, Niagara Symphony, Sarah & Rachel Crowhurst, Bain Printing and the
many who share our belief that there will be a “Life without Lupus”.
DECEMBER
2009 ANNUAL REPORT |