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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

 

From the President:
Pat Leece
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.


Fund Development
Bequests, donations (personal and corporate) and memorials
Millie Bonspiel (Milton)
Irish Canadian Connection Golf Classic (London)
M & M barbecues
Walk a Block (Welland, Trenton, Elliot Lake, Kirkland Lake, and Ajax)
Ridgeway Festival (Ridgeway)
Dress Down Days (Fort Erie, Toronto)
Yard Sale by Toronto School in our honour
Sale of books and promotional items
Katrina held a Rock Band concert in London (Proceeds to LFO)
Tammy's Clothing Sale
Joanne held a month-long event at a local mall in Kirkland Lake, distributing literature and accepting donations
Town of Fort Erie Gold Tournament

Extending our Reach:
Communications and increased public awareness
Distributed 29,200 copies of Introduction to Lupus; 2.800 copies of our newsletter; and 5,000 bookmarks throughout Ontario utilizing a network of community volunteers
Distributed information packages quarterly to Lupus Clinics in Ontario
Received a total of 3,629, 889 website hits
Distributed 5,078 pieces of mail
Conducted flag-raising ceremonies in communities throughout Ontario during the year with media contacts and literature distribution to city officials and local libraries, drug stores and hospitals
Proclamations read in various communities throughout Ontario ~ many telecast by local Cable TV, placed on the official website, posters in various departments and the lobbies 
Placed advertisements in community publications (circulation 1million +)
Participated in 7 health/volunteer fairs and community events
Arranged for 9 newspaper articles and 3 radio interviews
Delivered letter appeal and information packages (re: petition) to 137 MPPs in Ontario
Presented petition (introduced by MPP Kim Craitor) to Government on Ontario to request greater funding for educational and research activities
Made public presentations about lupus
Became a partner in Healthy Living, Niagara Public Health Department and Leave a Legacy
Facilitated presentations at 7 public schools, 5 high schools, and 5 colleges presented by Nursing students
Attended Niagara Falls Liberal Caucus meeting, meeting the various MPPs and Ministers
Caroline, Elliot Lake arranged a flag raising, public awareness events and fund raising events
Sent information packages to Ontario Nephrologists
Delivered boxes of literature to new doctors in the area
Proclamation read at Queen's Park
Health Fairs at Dofasco, Hamilton and General Dynamics, London
Literature to Red Cross (Enrichment Living)
Literature to Conestoga College

Consistent Delivery of HIGH QUALITY SERVICES
Maintained contacts with and gathered information from National Institutes of Health, United States Heath Services institutes, Lupus Foundation of America, Lupus Alliance of America, Lupus Research Institute and Cure4Lupus
Maintained 800 line for inquiries
Maintained office presence 4 days per week providing information and telephone support to members and the public
Responded to 41 walk-ins for information
Held information sessions/support group meetings in 6 locations
Distributed 224 information packages in response to inquiries
Responded to 6,785 e-mails re: information, support, and networking
Produced and distributed 2,800 copies of quarterly Lupus Talk newsletter
Expanded education library of books and pamphlets
Launched KIDZ Educational Study to determine existing literature for pediatric lupus patients; designed Phase II of the project and issued Request for Proposals
Shared information on issues potentially affecting people with lupus: electomagnetic fields, fluorescent lighting, tanning beds, DECT phones
Sent out H1N1 position of the Lupus Clinic located in the Toronto Western Hospital
Supplied information booklets to Hospital Libraries

Strengthening our VOLUNTEER FOUNDATIONS
Worked with volunteers to literature distribution, fundraising, public awareness and Board

RESEARCH
Distributed CaNIOS study request for lupus participants
Donated $10,500 funding to CaNIOS
Donated $5.500 to SLICC
Established a yearly Research Scholarship for a student
KIDZ Project ~ Phase

Page last updated: July 24, 2010