Together We Can Save A Child’s Heart

2016 ANNUAL REPORT

Kawasaki Disease Canada was incorporated under the Canada Not-for-pro�t Corporations Act in May 2014. In December 2015, Kawasaki Disease Canada became registered as a national charity.

Kawasaki Disease Canada25 Drumoak Place

Kitchener, ONN2A 3X5

Phone: 226-218-5100 Email: info@kdcanada.org

Website: www.kdcanada.org

Charitable Registration #: 81190 4572 RR0001Canada Revenue Agency: www.cra-arc.gc.ca/charities

@kawasakidiseasecanada

Kawasaki Disease Canada

@KawasakiDisCan

TABLE OF CONTENTS

Mission, Vision & ValuesPresident’s ReportResearch Committee ReportFundraising Committee ReportStatement of Operations & Changes in Net AssetsAwareness & Education Committee ReportSupport Committee ReportArticle: Raising Awareness #showusyourheartArticle: Student Research Award WinnerArticle: Save Your Child’s LifeVolunteers & Sponsors

@kawasakidiseasecanada

Kawasaki Disease Canada

@KawasakiDisCan

Mission, Vision & Values

MissionKawasaki Disease Canada’s mission is to promote awareness and education about Kawasaki disease, support individuals and family members affected by the disease, and advance research into the disease and its consequences.

ValuesApproachable, Dedicated, Knowledgeable, Respectful, Supporting, Acting and with Integrity.

VisionA world free of Kawasaki disease.

Pictured from left to right: Victor Zamin, Board Director and Chair of Fund Development Committee; Carin Lin, Board Director and Chair of Support Committee; Jane Breberina, Board Secretary; Shahwaiz Lalani, Board Treasurer; Elizabeth Heald, Board President; Susan Heald, Board Director and Chair of Research Committee.

Missing from photo: Melissa Brant, Board Director and Chair of Fundraising Committee, and Jonathan Baltrusaitis, Board Director and Chair of Marketing Committee.

President’s Report at the 2nd Annual General Meeting

Dear Members,

Today, you will hear from each of the program committee chairs, namely Awareness & Education, Research, and Support. They will share with us the collective achievements of Kawasaki Disease Canada in the 2015-2016 fiscal year.

What you will find is that despite falling very short of our financial goals, we have managed to implement numerous initiatives this year. The volunteers that make up the Board and committees have found ways to do much with little.

Being involved in the day-to-day running of Kawasaki Disease Canada has given me a unique perspective. I have been able to see firsthand the impact you have helped achieve. On a daily basis, I see messages from KD families, KD survivors and those that love them. Many are reaching out to seek input and advice about their KD journey. I can literally hear their exhale as they breathe a sigh of relief that there is someone out there that understands, that can empathize, that will listen and share.

We have reached 1000’s thru our web and social media presence. Each one of those people has been educated and has in turn done their part to raise awareness of Kawasaki disease. And they have done so because your work has inspired them to do so. Your work has inspired others to join our team. Your work has saved hearts and saved lives.

A lot of progress has been made to build a solid foundation for this national organization. A lot of progress has been made to raise awareness and to support those faced with Kawasaki disease. But, there is much work to do.

Thank you to each of you for your continued commitment to Kawasaki Disease Canada. There are only 5 other organizations like us in the whole world, and none other in all of Canada. What you do is important. Important to Canadians. Important to families. Important to me.

Together, we can save a child’s heart.

Elizabeth HealdPresident, Kawasaki Disease Canada PRES

IDEN

T’S

REPO

RT

In September, 2015, the Research Committee presented a set of principles which were adopted by the Board of Directors. These included that the process be fair and transparent, that applicants for research funds need to have sufficient access to research facilities and to Ethics Review Boards, that the Research Committee will be responsible for finding qualified reviewers for fund applications. The Board also agreed that Kawasaki Disease Canada could fund research which is biomedical, psycho-social, epidemiological and/or educational in nature. Due to limited funds and limited human resource capacity, however, it was agreed that we would call for proposals for only one type of research in each application cycle. The Board also decided to offer a Student Research Award.

Our subsequent activities revolved around two programs:

A. Student Research Award

• Developed terms of reference and application procedures/forms for the Inaugural award • Circulated notice of award to Canadian Universities and posted on Kawasaki Disease Canada website (kdcanada.org/research) • Received and adjudicated applications • Announced award recipient • Kawasaki Disease Canada hosted a talk by and reception for the recipient

B. Research Grants Program

• Completed terms of reference, application procedures and applications forms for the first Call for Proposals for our Research Grants Program (Currently awaiting sufficient funds to proceed with this)

• As agreed by the Board in September, 2015, the first research grants will be allocated to projects researching ways to improve education around Kawasaki disease

Research Committee Report for Annual General Meeting

By: Committee Chairperson – Susan Heald

Period: April 1, 2015 – March 31, 2016

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#Fundraising Events:

• A Family Fun Day was held in Brighton, Ontario raised $2,000.00 with games, raffles and a BBQ, along with good local media coverage

• A BBQ Fundraiser sponsored by Piller’s Fine Foods and Domenic’s No Frills in Guelph, Ontario was well attended, creating awareness and raising $1,500.00

Future Activities:

• The committee realizes the need to expand its efforts and is investigating options to hold larger national fundraising events

• A fundraising event how-to guide is being created to facilitate Kawasaki Disease Canada supporters in hosting their own events in cities across Canada

• Other fundraising options being explored include sourcing items for sale to raise both funds and awareness

Fundraising Committee Report for Annual General Meeting

By: Committee Chairperson – Melissa Brant

Period: April 1, 2015 – March 31, 2016

Statement of Operations & Changes in Net Assets

Year Ended March 31, 2016

42.78$ 4,578.88$

405.00$ 5,026.66$

5,000.00$ 3,615.25$ 2,001.25$

10,616.50$

1,949.41$ 1,500.00$ 1,215.00$

585.79$ 309.64$

30.00$ 5,589.84$

5,026.66$

$ -

Net Assets Cash Beg. Bal.

End. Bal. InsuranceNet Assets

Revenues Sponsorships Fundraising DonationsTotal Revenue

Expenses Marketing Expense

1 Research Initiatives Insurance Expense AGM Expenses Legal Expense Bank Service ChargesTotal ExpensesExcess of revenues over expenses being net assets year to endTotal Net Assets & Expenses 10,616.50$

1Directors & Officers 648.00$ Commercial Liability Policy 972.00$ Total Insurance 1,620.00$ Insurance Expense (9/12) 1,215.00$ Remaining Coverage 405.00$

22

2 Beginning cash balance was added twice since beginning GL in April; two times the amount was subtracted in this sheet to offset the entry

Awareness & Education Committee Report for Annual General Meeting

By: Committee Chairperson(s) – Jonathan Baltrusaitis/Elizabeth Heald

Period: April 1, 2015 – March 31, 2016

Awareness Activity Report

• Designed text and graphic layout for Kawasaki Disease Canada business card; wrote symptom statement with advisory board consultation; created mission text “Supporting Families • Education • Research”; printed and distributed cards

• Conceived “Show Us Your Heart” social media campaign to publicize Kawasaki Disease Awareness Day

• Coordinated media articles, provided contacts, research, and structural consultation to authors • January 2016 - “Awareness of This Disease Could Save Your Child’s Life – Kawasaki Disease Is The Stuff Of Nightmares…But It Doesn’t Have to Be” by Dr. Kim Foster for YummyMummyClub.ca blog

• January 2016 – Created press release “Awareness Saves Lives – Today is Kawasaki Disease Awareness Day” and distributed to all media contacts, shared on website, social media etc.

• February 2016 - “Heart-wrenching diagnosis” by David DiCenzo and published in Guelph Tribune

• Conducted “Social Media Survey” to determine what level of engagement and types of information engaged public would like to receive from KD Canada

Education Activity Report

• Facilitated the delivery of educational presentations to healthcare professionals in Ontario:

• April 2015 – Dr. Rejane Dillenburg presented “Update from the 11th International Kawasaki Disease Symposium 2015” to the Academy of Medicine in Waterloo Region; audience was family docs, ER docs and hospitalists

• July 2015 & February 2016 – Elizabeth Heald delivered two presentations to University of Waterloo School of Pharmacy students (Paediatric Pharmacy Advocacy Group) and McMaster University Medical School students (Kitchener campus)

• Held preliminary discussions with KD specialists to determine best format to deliver additional presentations outside of Ontario

AWARENESS & EDUCATION COMMITTEE REPORT

Volunteer Roster

•  We currently have a roster of 10 one-on-one support volunteers • We have volunteers in the provinces of Alberta, Ontario and PEI• Active recruitment of volunteers was not required, based on current support request volume

One-On-One Support Program Development

•  In January 2016 the following support forms were approved by the Board:

•  “Support Request Form” for those requesting support Questions (or subset of questions) will be sent via email when a support request is received • “Parent Volunteer Form” for those interested in becoming parent support volunteers Questions will be sent via email to those expressing interest in volunteering with the support program

• “Survivor Volunteer Form” for those interested in becoming survivor support volunteers Questions will be sent via email to those expressing interest in volunteering with the support program

• The development of additional support documentation is ongoing including: • Defining requirements and responsibility of support volunteers • Training documents

•  Moving forward: assess the current support needs of KD families and determine how we can grow and evolve our program to best meet those needs

Support Requests

• We have received a few support requests via the website support request form • Only one required ongoing support • Support communication has been via email

•  Several inquiries have been received via our Facebook page as private messages and as posts to our wall • Inquiries most often ask about specific issues and are not requests for one-on-one support • Inquiries were dealt with in consultation with members of our Advisory Board, as well as by sharing on our wall for other followers to share their experiences • Development of guidelines for responding to medical inquiries is ongoing

Support Meetings

•  Planning and preparation was done for a parent meeting to be held at Sick Kids in April 2016•  Goals of the meeting: • To provide an opportunity for KD parents to meet each other and build informal support systems • To engage more parents and potentially gain some additional volunteers • Gage parent interest of in-person support meetings•  Plans for future parent and survivor meetings are in development, as well as plans for establishing a youth group

FAQs

•  List of frequently asked Kawasaki disease questions was developed•  When approved by the members of our Advisory Board and the Board, the FAQs are to be posted to the website and be used by support volunteers when responding to support requests

SUPPORT COMMITTEE REPORTSupport Committee Report for Annual General Meeting

By: Committee Chairperson– Carin Lin

Period: April 1, 2015 – March 31, 2016

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#Raising Awareness for Kawasaki Disease

Social Media Campaign #ShowUsYourHeart

January 23, 2016

#ShowUsYourHeart to spread the word about Kawasaki disease! Please take a picture of your “finger-heart” and post it along with the text below on Facebook, Instagram, LinkedIn, Twitter…whatever your pleasure. By doing so, you could save a child’s heart!

Kawasaki disease is the #1 cause of acquired heart disease in children. EARLY DETECTION IS CRITICAL so know the symptoms.

Children exhibiting FEVER for five days or more with any two of these symptoms should be seen by a doctor immediately:

• body rash• red eyes• swollen hands or feet• cracked red lips• bumpy red tongue• swollen lymph node on neck

Visit kdcanada.org for more information. And THANK YOU!

January 26th is Kawasaki Disease Awareness Day.

Thank Y�

Kawasaki Disease Canada’s Inaugural Student Research Award Winner

Congratulations to Mathew Mathew!

April 7, 2016

Kawasaki Disease Canada is pleased to congratulate Mathew Mathew as the winner of our Inaugural Student Research Award! Mathew’s research involves working to construct computer models of KD patients with large aneurysms and use computers to investigate how blood flows through the models. It is expected that this will help determine how the location and shape of the aneurysm affects the chance of forming blood clots. This work forms part of Matt’s Master of Science degree at the University of Toronto. Matt’s research is overseen by Dr. Brian McCrindle, staff cardiologist and senior scientist atThe Hospital for Sick Children in Toronto, Ontario.

Along with members of Kawasaki Disease Canada’s Board of Directors and Mathew’s colleagues from SickKids, joining us on March 8, 2016 at the award presentation were KD moms and kids Pam & Sandra Cummings (the funds raised at their event last summer funded this award) and Nora & John Chisel (John was in Toronto to receive his Ontario Junior Citizen award). We were thrilled that they could join the celebration!

#Thank Y�Awareness of this Disease Could Save your Child’s Life

Published in Erica Ehm’s YummyMummyClub on January 26, 2016 by Dr. Kim Foster

When Carin’s two year-old son Isaiah came down with a fever, she didn’t worry at first. After all, he had just started preschool, and everyone knows preschools are petri dishes for viruses. There was no reason to suspect anything more. She treated his fever at home and kept a close eye on him. A few days later, the fever was still raging, so she took him to a walk-in-clinic, like any parent would. There, the doctor told her Isaiah had a virus, and he’d be better soon.

But he didn’t get better. In fact, the fever persisted, and the symptoms took a turn for the strange. He developed swollen lymph nodes, and an odd rash. He refused to walk. What was going on?

After a second visit to the walk in clinic (where she was offered more reassurance), and two visits to her pediatrician, the days were passing, and Isiah wasn’t getting any better. He was getting worse. But nobody could give her a diagnosis.

Finally, Carin took her son to Sick Kids ER. And there — at last — the proper diagnosis was made: a rare illness that most commonly affects kids under the age of five. Treatment was started.

Which sounds like a good thing. A relief, even. Trouble was…the diagnosis was made too late.

Because of this illness, Isaiah’s heart suffered irreparable damage. An echocardiogram (an image of the heart) performed six weeks later showed giant coronary artery aneurysms. At the age of four he had cardiac bypass surgery — a procedure that was, unfortunately, only partially successful. He now lives on daily medication and injections. Now, at the age of six, Isaiah is so familiar with going to the hospital he calls it “my hospital.”

So what was the mystery diagnosis? Kawasaki Disease.

Never heard of it? I’m not surprised. Not many people have.

But that needs to change. Because as tragic as it is, Isaiah’s story isn’t the worst one out there.

Go to http://kdcanada.org/awareness-of-this-disease-could-save-your-childs-life/ to read the full article.

#2016

Volunteers & Sponsors

Board Members

Elizabeth Heald - President Jane Breberina - Secretary Shahwaiz Lalani - Treasurer Jonathan Baltrusaitis - Director Melissa Brant - DirectorSusan Heald - DirectorCarin Lin - Director Victor Zamin – Director

Advisory Council

Nita ChahalDr. Rejane DillenburgDr. Brian McCrindleKen PotvinDr. Rae Yeung

Volunteers

Julie Adams-Taghizadeh Natalie BradburySarah ChidiacAnne ClendeningPam CummingsAmy DeanDavid DiCenzoJanice DoddJennifer HymmenFaisal IkramAhlexxi JelenPauline LabelleSarah LanisTiffany LevesqueDebbie LopesCarrie LovegroveSara MacDougallDiane Nielson-SmithBren-Ann PoelzerVanessa Rovensky HengererMeghann Trott

Thank Y�