jeanne samonas - meaofor the year ended december 31, 2009 revenue 2009 expenses ontario trillium...

Myalgic Encephalomyelitis Association of Ontariowww.meao.ca

Infoline Toronto 416.222.8820 Toll-Free 1.877.632.6682 | Email [email protected] Reg. Number 892267568RR0001

MYALGIC ENCEPHALOMYELITIS ASSOCIATION OF ONTARIO

ANNUAL REPORT 2009 | 2010


112

This past year has been one of great challenges, but also great successes, with amazingaccomplishments that will serve as inspiration for years to come.

As of 2005, there wereapproximately 440,000 people in the province of Ontario whohave been diagnosed with Myalgic

Encephalomyelitis (Chronic Fatigue Syndrome), Fibromyalgiaand Multiple-Chemical Sensitivities. Across Canada we aremore than 1.1 million in number – behind only Diabetes and Heart Disease/Stroke for numbers of people living withchronic disabling illnesses. These figures are provided by the Canadian Community Health Survey, the gold standardfor health statistics in Canada. In 2010, they will be repeatingtheir questions on our illnesses and no doubt, sadly, thesenumbers will climb.

We must rise to meet the challenge. This past year, we movedinto our first office, the realization of over 18 years of hope.Because of this new office, we will be better able to meet the needs of our members and facilitate our goals as anorganization. We have a base for our volunteers, for supportgroups, community activities and hopefully a growingresource library.

Our most successful event occurred on May 12th at Queen’s Park in Toronto, marking International ME/FM/MCSAwareness Day with a rally on the south lawn, a newsconference inside Queen’s Park and speeches by variousMPPs on our behalf. Our thanks go out to all of the organizersand to the many individuals and support groups who werewell enough to attend.

In 2010, we also wrote some of the first articles on the newand exciting research into the MRV family of viruses (XMRVamong them) and its implications for diagnosis and hopefullyfuture treatments. We held four major workshops, bringing inDr. Bell from the United States to speak about XMRV, Dr. Steinfrom Alberta, along with talks by Dr. Bray from Women’sCollege Hospital and lawyer Hugh Scher. Our talks are nowbeing recorded and placed online so thousands of people

across the country can benefit from them. We increased the effectiveness of our quarterly newsletters and addedmonthly email alerts to patients, medical practitioners, andthe general public.

Thanks to funding from the Ontario Trillium Foundation and the City of Toronto, our support services increased, with greater use of our toll-free Infoline, our informationpackages and our outreach to families of children withME/CFS and to their school boards. We began an outreachcampaign to all the Community Health Clinics in Ontario and all the major counselling organizations.

We are particularly proud that our membership has grown by 25% in one year, and we now also represent 17 Ontariosupport groups. As president, I had the honour of attendingsupport group meetings throughout the province. It was mypleasure to freely exchange information and support at these meetings. The backbone of our organization is ourgrassroots support.

This past year, our organization increased its public profilethrough several media stories. Two stories appeared in the Toronto Star, several in Global Canwest publicationsthroughout Canada, and interviews took place with CBC Television, Channel CP24 and CTS Television.

These are extraordinary times. For the first time, in manyyears, we have exciting research taking place, but we still donot have significant government funds for the MEAO or fortreatment centres. As I hand over the presidency of theMEAO, I want to stress to our members that this organizationprovides a great opportunity to put your skills to work for a very worthwhile cause. We need more volunteers, morepublic voices, and we are in great need of donations to keepour programs growing. This opportunity as MEAO Presidenthas strengthened my belief that we will achieve our goals ofhaving proper health care in this province. It will take eachand every one of us to make this happen. Let’s start now.

Jeanne Samonas

President’s LetterEXTRAORDINARY TIMES INSIDE THE MEAO

OPERATING REVENUE AND EXPENSESFor the year ended December 31, 2009

REVENUE 2009

EXPENSES

Ontario Trillium Foundation, 64%Donations, 16.5%City of Toronto, 9%Membership/Sales, 10.5%

STATEMENT OF OPERATIONS For the year ended December 31, 2009

REVENUESGrant – Ontario Trillium Foundation $ 52,435 Grant – City of Toronto (CSP) 7,285 Donations 13,611 Membership Fees 3,395 Fundraising / Ad Revenue /Other 5,423

$ 82,149

EXPENSESProvincial Coordinator 47,186Program and Outreach Expenses 12,103General Office Expenses 4,358Professional Fees 2,384Rental Space for MEAO Activities 2,200Volunteer and AGM Expenses 1,749

$ 69,980

EXCESS OF REVENUE OVER EXPENSES $ 12,169

Condensed financial statements are prepared by theBoard of Directors from our audited financial statements.Full audited statements are available on request.

BOARD OF DIRECTORS DURING 2009-2010

Jeanne Samonas, President Jaan Meri, Vice-President Denise Magi, Secretary Arvinder S. Bindra

Izzat JiwaniLisa McGillDiane MeitzChris Pike

Provincial Coordinator: Theresa DobkoMedical Advisor: Dr. Alison BestedLegal Advisor: Hugh Scher, LL.B.

Provincial Coordination, 67%Program Supplies, 17%Operating Expenses, 16%

Printing donated by:


310

EXTRAORDINARY STATISTICS

1 Number of Canadians Affected is taken from the Canadian Community Health Survey (CCHS) for 20052 As some patients may be diagnosed with more than one of these conditions, the CCHS reports 1,135,225 Canadians

were diagnosed with at least one of these conditions as of 2005.3 This figure includes $400,000 to the Environmental Health Clinic of Women’s College Hospital and $67,000,

as the final year of a three-year Ontario Trillium Foundation grant to the MEAO.

Chronic IllnessCategory

Heart Disease/Stroke

Diabetes

M.E./Fibromyalgia 2

Multiple ChemicalSensitivity Illness (MCS) 2

Alzheimer’s/Dementia

HIV/AIDS

Multiple Sclerosis

Number of Canadians Affected 1

1,585,556

1,324,874

723,598

598,535

280,000

58,000

Ontario Government Support forCommunity Initiatives 2010 (not including

hospital payments or OHIP payments to doctors)

$8,685,000

$185,250,000

3 $467,000

$13,000,000

$58,000,000

$670,000

Government Support to Major Charities for 2009(from charities’ annual reports)

Heart & Stroke Found. $13,274,000

Can. Diabetes Assoc. $7,663,000

National ME/FM Network $0

Alzheimer Soc. of Can. $ 2,158,000

Can. AIDS Society $1,481,837

MS Society of Can. $2,280,000

We thank the following organizations and businesses that made donations of cash or services:

Jody Atherton

Joanna Bechtold

Jim Carruthers

Bohdanna Dackiw

Kathy Denham

Judy Dinsdale

Theresa Dobko

Estate of Helyn Ruth

Family of Bill Whibley

Family of Joey Wykes

Chad Forsey

Linda Golby

Lois Holmes

Lynn Humm

Susan Kennedy

Stephanie Lo

Deb MacGregor

Lynne MacLean

Maureen MacQuarrie &Peter Foulds

Fred Matthews

Lisa McCorquodale

Patricia Meitz

Lisa Naprawa

Ellen Pickett

Cathy & John Prescott

Brenda Roberts

Sue Sanson

JeyavathanaShanmuganathan

Elizabeth Shilton

Jim Shipway

Nancy Thomson

Russell Weiss

Marilyn Whibley

adidas Canada

Beylah Rosenbaum, Website Design

BMO Employee Charitable Foundation

Boland Howe

Ontario Power Generation Employees’ and Pensioners’Charity Trust

St. Joseph’s Catholic Women’s League

TPH – The Printing House

United Way of Greater Toronto

United Way Ottawa

Women’s College Hospital

We thank the following individuals that made donations of $100 or more:

The Myaglic Encephalomyelitis Association of Ontario haslong represented the needs of those living with ME/CFS, andwith the closing of an Ontario fibromyalgia group in recentyears, we have added this severe chronic illness to ourmandate. We also provide many educational services tothose living with Multiple Chemical Sensitivities Illness(MCS), along with the Environmental Health Association of Ontario.

More than 440,000 Ontarians have these illnesses or 1.1million Canadians. We first reported on these staggeringnumbers last year. This year we also looked into the level ofgovernment support for our illnesses, and compared thelevels of fundings we receive to that granted to the othermajor chronic disabling illnesses.

The disparity in funding at the provincial and national levels is apparent. The Board of Directors of the MEAO has advocated this past year for funding from theOntario Ministry of Health for our services. We alsosupport the efforts of the National ME/FM ActionNetwork for federal funding for research and education.

Imagine trying to run a provincial cancer network, or acommunity AIDS organization on $67,000 in funding.

OUR THANKSFor the Donation Period from October 2009 through September 2010

The MEAO would like to thank the Ontario Trillium Foundation and the City of Toronto for funding our services and our volunteer programs.

If we inadvertently misspelled or omitted your name, please accept our sincere apologies and contact us at 416.222.8820

To all our other donors and to all our volunteers, we thank you. We would not exist without your help.

55,000


94

CREATING A COMMUNITY

ing and found

questions over which patients were being tested and what methods were used. In late August 2010, the U.S. Food andDrug Administration found MLV gene sequences, similar to that of the recently discovered XMRV, in 86.5% of patients withCFS and 6.8% of healthy blood donors that were tested.

We do not yet know where this research will lead. We do not know if these MLV viruses cause ME/CFS, are triggers forME/CFS, or merely markers of another infection in the damaged immune systems of patients with ME/CFS. Many patientswith Fibromyalgia – a very similar illness – are also wondering if there is more overlap between our conditions than

public workshop on the topic to help make sense of this extraordinary news.

A YEAR OF BREAKTHROUGHS Who Are We?

community of very ill people trying to take care of their own. Times are changing. Now we have parents of young people with ME/CFS joining us. We’ve expanded our community to include all those living with Fibromyalgia and environmentalillnesses like Multiple-Chemical Sensitivities. We are grateful for our partnership with the Environmental Health Clinic ofWomen’s College Hospital, the premier diagnostic centre in Ontario. Over the years some amazing doctors and other

advocates who have represented individuals and also taken our human rights cases all the way to the Supreme Court. We have ongoing partnerships with transit commissions across the province who display our subway posters and bus cards in several centres so we can reach some of the most isolated individuals. We are opening new doors with CommunityHealth Centres and counselling organizations. We must extend our work to all of the home care agencies across Ontarioso our members who are housebound – and even bedbound – get vital services in the home.

Today the MEAO is not just a community of patients, families and volunteers; we are a growing network of local support

groups joined us at Queen’s Park for our May 12th activities or held events in

hope to further nurture all local initiatives in the coming years. Here are just some of the regions covered by these amazingsupport groups: Brampton, Brockville, Durham Region, Kitchener/Waterloo/Wellington, London, Mississauga, NewLiskeard, (2), Peterborough, Scarborough, Toronto (2), Vaughan Township, and York Region.

Accountable to Our Community

Over a two month period, all of our individual and group members were approached to participate in our online ortelephone survey. Our last survey was in 2006 so we not only asked our members questions about how we are performingtoday, we asked them to evaluate our level of service compared to 2006. We are grateful to the 155 members whoparticipated and our main questions are listed below.

Level of Satisfaction In Each Area:

1

to lack of funding and resources.

Satisfaction with Our Response Time to Your Call/Email 98%

Satisfaction with the Quality of our Infoline 98%

Satisfaction with Printed Information We Send 98.5%

Satisfaction with Legal Disability Calls 100%

Satisfaction with Referrals to Doctors, etc. 95%

98.7%

Satisfaction with Our Public Workshops 95.2%

Satisfaction with the Information on our Website 97.5%

Satisfaction with Our Public Awareness Initiatives 1 83.1%

Percentage of Long-Time Members Who Rated MEAO as Improved Since 20061 89%


58

ON THE FRONT LINE

Since 1991, the M.E. Association of Ontario has been a front-line service charity as well as a provincial association of

Foundation and the City of Toronto, as well as by many community donations.

Educating Patients, Families and Professionals:

We also publish our quarterly magazine Reaching Out, complete with the latest medical updates, research information,

province, our website carries information about all of our services, our upcoming events, as well as recordings andslideshows from our recent workshops. Just visit us at www.meao.ca

Dr. David D. Bell“Current Findings and Research into ME/CFS: XMRV

Virus and What It Means”

Dr. Ellie Stein, MD, FRCP(C)“Myalgic Encephalomyelitis and Chronic Fatique

Symdrome: Coping and Hoping”

What Everybody with ME/FM Needs to Knowabout their Legal Rights

with Hugh Scher, LL.B

Keynote Speaker: Dr. Riina BrayChemicals and ME/FM/MCS:

What is the Connection?

OPENING DOORSMEAO Opens Doors at Queen’s Park

Queen’s Park, Toronto and was a very successful awareness event. Inspiringspeeches were given by Dr. Alison Bested, Dr. Darryl Appleton, lawyer HughScher, Lin Grist of the Environmental Health Association of Ontario andMEAO President Jeanne Samonas. Inside Parliament, �e HonourableKathleen Wynne, MPP, announced our event in the morning session, along

and we will continue to reach out to all levels of government until we havethe funding needed for MEAO’s support programs and for proper medicalcare and research.

Chronic-illness group voices call for national diagnostic clinicBy Linda Nguyen, Canwest News Service May 13, 2010 Photograph by: File photo, Bloomberg

is desperately needed to help the more than one million

to a support group for those with the conditions.

"It's very important that people hear us," said Jeanne Samonas,president of the Myalgic Encephalomyelitis Association ofOntario during a news conference Wednesday. "We're realpeople with real illnesses and we need help." [excerpt]

achievement and was the culmination of a long campaign to raise

ME/CFS, FM and MCS communit

than 800 clients a year. From our new home, we can run supportgroups, free workshops, volunteer training sessions and community

Currently, we are raising additional funds to create a library of books, research articles, videos and other materials. Please donate so our library will become a centre of excellence for Ontario.

since our inception in 1991. We provide telephone support, educationalmaterials and we advocate with their schools and the Ministry of Education. Our biggest

conference last year was to 65 social workersfor the Toronto Catholic School Board.

Children and Teens Get ME/CFS Too


76

A YEAR IN THE LIFE

Dear MEAO:I have to do almost everything from my bedI am wearing my timer from Dr Bested so I don't overextend myself. My dog Seamus iscuddled next to me as is his custom. He is great company. I wanted you to know I reallyappreciate your publication. I put my FallNewsletter beside my computer so you can see. I was truly thrilled with the slides from Dr Ellie Stein's lecture.

Thank you, Maureen M.

I am very glad you had Dr. Stein talk about why chronic fatigue

syndrome is not a psychiatric disease.Why do the insurance companies

want to regard us as psychiatric casesbut researchers and the governmentare saying it’s a virus and now I can’t

give blood anymore? Thanks forfighting for the truth.

A YEAR IN THE LIFE

“Who can keep up with all theresearch and new developmentsabout ME/CFS? My doctor doesn'tkeep up to date. So I had to runaround to try to find the research andI was getting more sick! Gettinginformation from the MEAO haslowered that burden and now I havereliable help.”

Quotes from Infoline Callers and from Our 2010 Membership Survey*

* Some specific details have been removed to protect the identity of the individuals quoted.

Our child has been ill and bedridden for 18 years.We're elderly and when we're gone, it will be adisaster … The only hope is to find the cause ofthe disease and treatment for it.

I was so frustrated with the years ofmisdiagnoses I had to go throughbefore being properly diagnosed.I went online and found yourorganization. You sent me and my doctor the right handbook to diagnose me.

Thank you for all the work you do tohelp us. I have been feeling verydepressed and hopeless lately feelingso ill. The MEAO has been my solehelp and you have kept me going.Thank you so much!

“I've asked for lots of packages this past year and you findanswers even for the special requests, like XMRV, whetherto take an H1N1 vaccination, dentists, anesthetics andmany more. I don't know how you keep up with it. Thanksfor giving me clear answers.”“

“

“

“As a support group leader, I need all the information I can get.We need to work together as many voices in order to be heard.”

“I think it's terrible that more people do not support yourgroup. I think it's partly sexism they don't. Imagine if hundredsof thousands of men in the prime of their life suddenly had tostop working? Keep up the fight.”

“Just a huge thank you to everyone who gives of their time andcares enough to keep this organization going. So many of us areisolated from society, but having a "group of friends" such asthese people makes me feel I belong somewhere in this world.”

““

“

“

“


58

ON THE FRONT LINE

Since 1991, the M.E. Association of Ontario has been a front-line service charity as well as a provincial association of

Foundation and the City of Toronto, as well as by many community donations.

Educating Patients, Families and Professionals:

We also publish our quarterly magazine Reaching Out, complete with the latest medical updates, research information,

province, our website carries information about all of our services, our upcoming events, as well as recordings andslideshows from our recent workshops. Just visit us at www.meao.ca

Dr. David D. Bell“Current Findings and Research into ME/CFS: XMRV

Virus and What It Means”

Dr. Ellie Stein, MD, FRCP(C)“Myalgic Encephalomyelitis and Chronic Fatique

Symdrome: Coping and Hoping”

What Everybody with ME/FM Needs to Knowabout their Legal Rights

with Hugh Scher, LL.B

Keynote Speaker: Dr. Riina BrayChemicals and ME/FM/MCS:

What is the Connection?

OPENING DOORSMEAO Opens Doors at Queen’s Park

Queen’s Park, Toronto and was a very successful awareness event. Inspiringspeeches were given by Dr. Alison Bested, Dr. Darryl Appleton, lawyer HughScher, Lin Grist of the Environmental Health Association of Ontario andMEAO President Jeanne Samonas. Inside Parliament, �e HonourableKathleen Wynne, MPP, announced our event in the morning session, along

and we will continue to reach out to all levels of government until we havethe funding needed for MEAO’s support programs and for proper medicalcare and research.

Chronic-illness group voices call for national diagnostic clinicBy Linda Nguyen, Canwest News Service May 13, 2010 Photograph by: File photo, Bloomberg

is desperately needed to help the more than one million

to a support group for those with the conditions.

"It's very important that people hear us," said Jeanne Samonas,president of the Myalgic Encephalomyelitis Association ofOntario during a news conference Wednesday. "We're realpeople with real illnesses and we need help." [excerpt]

achievement and was the culmination of a long campaign to raise

ME/CFS, FM and MCS communit

than 800 clients a year. From our new home, we can run supportgroups, free workshops, volunteer training sessions and community

Currently, we are raising additional funds to create a library of books, research articles, videos and other materials. Please donate so our library will become a centre of excellence for Ontario.

since our inception in 1991. We provide telephone support, educationalmaterials and we advocate with their schools and the Ministry of Education. Our biggest

conference last year was to 65 social workersfor the Toronto Catholic School Board.

Children and Teens Get ME/CFS Too


94

CREATING A COMMUNITY

ing and found

questions over which patients were being tested and what methods were used. In late August 2010, the U.S. Food andDrug Administration found MLV gene sequences, similar to that of the recently discovered XMRV, in 86.5% of patients withCFS and 6.8% of healthy blood donors that were tested.

We do not yet know where this research will lead. We do not know if these MLV viruses cause ME/CFS, are triggers forME/CFS, or merely markers of another infection in the damaged immune systems of patients with ME/CFS. Many patientswith Fibromyalgia – a very similar illness – are also wondering if there is more overlap between our conditions than

public workshop on the topic to help make sense of this extraordinary news.

A YEAR OF BREAKTHROUGHS Who Are We?

community of very ill people trying to take care of their own. Times are changing. Now we have parents of young people with ME/CFS joining us. We’ve expanded our community to include all those living with Fibromyalgia and environmentalillnesses like Multiple-Chemical Sensitivities. We are grateful for our partnership with the Environmental Health Clinic ofWomen’s College Hospital, the premier diagnostic centre in Ontario. Over the years some amazing doctors and other

advocates who have represented individuals and also taken our human rights cases all the way to the Supreme Court. We have ongoing partnerships with transit commissions across the province who display our subway posters and bus cards in several centres so we can reach some of the most isolated individuals. We are opening new doors with CommunityHealth Centres and counselling organizations. We must extend our work to all of the home care agencies across Ontarioso our members who are housebound – and even bedbound – get vital services in the home.

Today the MEAO is not just a community of patients, families and volunteers; we are a growing network of local support

groups joined us at Queen’s Park for our May 12th activities or held events in

hope to further nurture all local initiatives in the coming years. Here are just some of the regions covered by these amazingsupport groups: Brampton, Brockville, Durham Region, Kitchener/Waterloo/Wellington, London, Mississauga, NewLiskeard, (2), Peterborough, Scarborough, Toronto (2), Vaughan Township, and York Region.

Accountable to Our Community

Over a two month period, all of our individual and group members were approached to participate in our online ortelephone survey. Our last survey was in 2006 so we not only asked our members questions about how we are performingtoday, we asked them to evaluate our level of service compared to 2006. We are grateful to the 155 members whoparticipated and our main questions are listed below.

Level of Satisfaction In Each Area:

1

to lack of funding and resources.

Satisfaction with Our Response Time to Your Call/Email 98%

Satisfaction with the Quality of our Infoline 98%

Satisfaction with Printed Information We Send 98.5%

Satisfaction with Legal Disability Calls 100%

Satisfaction with Referrals to Doctors, etc. 95%

98.7%

Satisfaction with Our Public Workshops 95.2%

Satisfaction with the Information on our Website 97.5%

Satisfaction with Our Public Awareness Initiatives 1 83.1%

Percentage of Long-Time Members Who Rated MEAO as Improved Since 20061 89%


310

EXTRAORDINARY STATISTICS

1 Number of Canadians Affected is taken from the Canadian Community Health Survey (CCHS) for 20052 As some patients may be diagnosed with more than one of these conditions, the CCHS reports 1,135,225 Canadians

were diagnosed with at least one of these conditions as of 2005.3 This figure includes $400,000 to the Environmental Health Clinic of Women’s College Hospital and $67,000,

as the final year of a three-year Ontario Trillium Foundation grant to the MEAO.

Chronic IllnessCategory

Heart Disease/Stroke

Diabetes

M.E./Fibromyalgia 2

Multiple ChemicalSensitivity Illness (MCS) 2

Alzheimer’s/Dementia

HIV/AIDS

Multiple Sclerosis

Number of Canadians Affected 1

1,585,556

1,324,874

723,598

598,535

280,000

58,000

Ontario Government Support forCommunity Initiatives 2010 (not including

hospital payments or OHIP payments to doctors)

$8,685,000

$185,250,000

3 $467,000

$13,000,000

$58,000,000

$670,000

Government Support to Major Charities for 2009(from charities’ annual reports)

Heart & Stroke Found. $13,274,000

Can. Diabetes Assoc. $7,663,000

National ME/FM Network $0

Alzheimer Soc. of Can. $ 2,158,000

Can. AIDS Society $1,481,837

MS Society of Can. $2,280,000

We thank the following organizations and businesses that made donations of cash or services:

Jody Atherton

Joanna Bechtold

Jim Carruthers

Bohdanna Dackiw

Kathy Denham

Judy Dinsdale

Theresa Dobko

Estate of Helyn Ruth

Family of Bill Whibley

Family of Joey Wykes

Chad Forsey

Linda Golby

Lois Holmes

Lynn Humm

Susan Kennedy

Stephanie Lo

Deb MacGregor

Lynne MacLean

Maureen MacQuarrie &Peter Foulds

Fred Matthews

Lisa McCorquodale

Patricia Meitz

Lisa Naprawa

Ellen Pickett

Cathy & John Prescott

Brenda Roberts

Sue Sanson

JeyavathanaShanmuganathan

Elizabeth Shilton

Jim Shipway

Nancy Thomson

Russell Weiss

Marilyn Whibley

adidas Canada

Beylah Rosenbaum, Website Design

BMO Employee Charitable Foundation

Boland Howe

Ontario Power Generation Employees’ and Pensioners’Charity Trust

St. Joseph’s Catholic Women’s League

TPH – The Printing House

United Way of Greater Toronto

United Way Ottawa

Women’s College Hospital

We thank the following individuals that made donations of $100 or more:

The Myaglic Encephalomyelitis Association of Ontario haslong represented the needs of those living with ME/CFS, andwith the closing of an Ontario fibromyalgia group in recentyears, we have added this severe chronic illness to ourmandate. We also provide many educational services tothose living with Multiple Chemical Sensitivities Illness(MCS), along with the Environmental Health Association of Ontario.

More than 440,000 Ontarians have these illnesses or 1.1million Canadians. We first reported on these staggeringnumbers last year. This year we also looked into the level ofgovernment support for our illnesses, and compared thelevels of fundings we receive to that granted to the othermajor chronic disabling illnesses.

The disparity in funding at the provincial and national levels is apparent. The Board of Directors of the MEAO has advocated this past year for funding from theOntario Ministry of Health for our services. We alsosupport the efforts of the National ME/FM ActionNetwork for federal funding for research and education.

Imagine trying to run a provincial cancer network, or acommunity AIDS organization on $67,000 in funding.

OUR THANKSFor the Donation Period from October 2009 through September 2010

The MEAO would like to thank the Ontario Trillium Foundation and the City of Toronto for funding our services and our volunteer programs.

If we inadvertently misspelled or omitted your name, please accept our sincere apologies and contact us at 416.222.8820

To all our other donors and to all our volunteers, we thank you. We would not exist without your help.

55,000


112

This past year has been one of great challenges, but also great successes, with amazingaccomplishments that will serve as inspiration for years to come.

As of 2005, there wereapproximately 440,000 people in the province of Ontario whohave been diagnosed with Myalgic

Encephalomyelitis (Chronic Fatigue Syndrome), Fibromyalgiaand Multiple-Chemical Sensitivities. Across Canada we aremore than 1.1 million in number – behind only Diabetes and Heart Disease/Stroke for numbers of people living withchronic disabling illnesses. These figures are provided by the Canadian Community Health Survey, the gold standardfor health statistics in Canada. In 2010, they will be repeatingtheir questions on our illnesses and no doubt, sadly, thesenumbers will climb.

We must rise to meet the challenge. This past year, we movedinto our first office, the realization of over 18 years of hope.Because of this new office, we will be better able to meet the needs of our members and facilitate our goals as anorganization. We have a base for our volunteers, for supportgroups, community activities and hopefully a growingresource library.

Our most successful event occurred on May 12th at Queen’s Park in Toronto, marking International ME/FM/MCSAwareness Day with a rally on the south lawn, a newsconference inside Queen’s Park and speeches by variousMPPs on our behalf. Our thanks go out to all of the organizersand to the many individuals and support groups who werewell enough to attend.

In 2010, we also wrote some of the first articles on the newand exciting research into the MRV family of viruses (XMRVamong them) and its implications for diagnosis and hopefullyfuture treatments. We held four major workshops, bringing inDr. Bell from the United States to speak about XMRV, Dr. Steinfrom Alberta, along with talks by Dr. Bray from Women’sCollege Hospital and lawyer Hugh Scher. Our talks are nowbeing recorded and placed online so thousands of people

across the country can benefit from them. We increased the effectiveness of our quarterly newsletters and addedmonthly email alerts to patients, medical practitioners, andthe general public.

Thanks to funding from the Ontario Trillium Foundation and the City of Toronto, our support services increased, with greater use of our toll-free Infoline, our informationpackages and our outreach to families of children withME/CFS and to their school boards. We began an outreachcampaign to all the Community Health Clinics in Ontario and all the major counselling organizations.

We are particularly proud that our membership has grown by 25% in one year, and we now also represent 17 Ontariosupport groups. As president, I had the honour of attendingsupport group meetings throughout the province. It was mypleasure to freely exchange information and support at these meetings. The backbone of our organization is ourgrassroots support.

This past year, our organization increased its public profilethrough several media stories. Two stories appeared in the Toronto Star, several in Global Canwest publicationsthroughout Canada, and interviews took place with CBC Television, Channel CP24 and CTS Television.

These are extraordinary times. For the first time, in manyyears, we have exciting research taking place, but we still donot have significant government funds for the MEAO or fortreatment centres. As I hand over the presidency of theMEAO, I want to stress to our members that this organizationprovides a great opportunity to put your skills to work for a very worthwhile cause. We need more volunteers, morepublic voices, and we are in great need of donations to keepour programs growing. This opportunity as MEAO Presidenthas strengthened my belief that we will achieve our goals ofhaving proper health care in this province. It will take eachand every one of us to make this happen. Let’s start now.

Jeanne Samonas

President’s LetterEXTRAORDINARY TIMES INSIDE THE MEAO

OPERATING REVENUE AND EXPENSESFor the year ended December 31, 2009

REVENUE 2009

EXPENSES

Ontario Trillium Foundation, 64%Donations, 16.5%City of Toronto, 9%Membership/Sales, 10.5%

STATEMENT OF OPERATIONS For the year ended December 31, 2009

REVENUESGrant – Ontario Trillium Foundation $ 52,435 Grant – City of Toronto (CSP) 7,285 Donations 13,611 Membership Fees 3,395 Fundraising / Ad Revenue /Other 5,423

$ 82,149

EXPENSESProvincial Coordinator 47,186Program and Outreach Expenses 12,103General Office Expenses 4,358Professional Fees 2,384Rental Space for MEAO Activities 2,200Volunteer and AGM Expenses 1,749

$ 69,980

EXCESS OF REVENUE OVER EXPENSES $ 12,169

Condensed financial statements are prepared by theBoard of Directors from our audited financial statements.Full audited statements are available on request.

BOARD OF DIRECTORS DURING 2009-2010

Jeanne Samonas, President Jaan Meri, Vice-President Denise Magi, Secretary Arvinder S. Bindra

Izzat JiwaniLisa McGillDiane MeitzChris Pike

Provincial Coordinator: Theresa DobkoMedical Advisor: Dr. Alison BestedLegal Advisor: Hugh Scher, LL.B.

Provincial Coordination, 67%Program Supplies, 17%Operating Expenses, 16%

Printing donated by:

Myalgic Encephalomyelitis Association of Ontariowww.meao.ca

Infoline Toronto 416.222.8820 Toll-Free 1.877.632.6682 | Email [email protected] Reg. Number 892267568RR0001

MYALGIC ENCEPHALOMYELITIS ASSOCIATION OF ONTARIO


jeanne samonas - meaofor the year ended december 31, 2009 revenue 2009 expenses ontario trillium...

Documents