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BELIEVE

2015/2016Annual Report

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TRANSFORMING TOMORROW TOGETHER

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Impact Across Canada

Two guys. Four wheels. One cause.When Marty Denonville found out that his sister-in-law’s three children had Huntington disease, the Windsor, Ontario resident knew he had to do something. He also knew just who to call. He and his long-time friend Jim Stewart had always dreamed of doing a coast-to-coast cycling trip across Canada, and the 7,500-kilometre adventure seemed like the perfect platform to raise awareness and funds for HD.

During the lead up and throughout their epic journey across Canada, Marty blogged about his hopes at www.twofourone.org. “The search for a cure and treatment for Huntington is like building a nest, one stick at a time,” he wrote. “The ride Jim and I will be embarking on… is hopefully a stick that will help build the nest.”

In May of 2016, the duo dipped their back tires in the Pacific Ocean in Vancouver’s Stanley Park to officially kick off their journey. Each day brought a new set of challenges, from gruelling climbs to powerful headwinds to tractor-trailers blasting past them at 120 kilometres an hour.

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However, a steady stream of hospitality, spectacular scenery and reminders of why they were riding, helped keep them moving forward. On the road to Revelstoke, B.C., a young woman recently diagnosed with HD pulled over for a selfie and to say thanks. In Calgary, local HSC Chapter member Jacob Hendriks treated the saddle-weary cyclists to a meal and sightseeing tour. A visit to the Terry Fox Memorial in Thunder Bay served as an inspirational pick-me-up, as did lunch with HSC CEO Bev Heim-Myers near Algonquin Park. These are just a few of the many people and stories that Jim and Marty encountered.

On July 25, Marty and Jim arrived at St. John’s Quidi Vidi beach to dip their front tires in the Atlantic Ocean. More than a remarkable adventure, their journey has inspired hope, increased awareness about HD and raised over $32,000 for vital research and support.

Table of Contents

MissionThe Huntington Society of Canada is a not-for-profit charitable organization which raises funds to deliver individual and group counselling services to support individuals and families living with Huntington disease (HD) and to fund medical research to delay or stop the progression of the disease. The Society also works with health and social services professionals to enable them to better serve people living with HD.

From the Chair & CEO ResearchFamily ServicesYouth Raising AwarenessAdvocacyOur DonorsFinancial Health

610141618212436

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From the Chair andChief Executive Officer

We are pleased to present the annual report for the Huntington Society of Canada for the year 2015-2016. From our million dollar match with Brain Canada to our efforts to bring more clinicians, research, and caregivers together to help lay the foundation for clinical trials, the Huntington Society of Canada has had another successful year.

While research is paving the way to treatments, the Family Services Team is providing vital support to people living with HD right now. Our new educational modules have been distributed to all of our team members so they are prepared with concise, up-to-date slides and videos at their fingertips. Our team can now spend less time preparing and more time connecting.

We are pleased with the engagement of our youth who are actively involved with Young People Affected by Huntington disease (YPAHD), our HSC mentorship program and HDYO (an international youth organization supported by HSC with a focus on Juvenile Huntington disease).

Thanks to our inspiring volunteers, we continue to raise the bar, reaching out with innovative awareness activities like Barb’s Ribbons of Hope and Lightitup4HD. In the past year our volunteers have hosted a remarkable 90 events across the country, attracting more than 7,300 participants and raising a total of $1.1 million in our communities. In addition, our HSC national symposium offered over 300 participants information on clinical trials; a 20 per cent jump in attendance from our previous Symposium.

In April, Senator Cowan’s Bill S201 was unanimously passed through the Senate to the House of Commons. Moved to 1st reading in the House by sponsor MP Rob Oliphant in May 2016, we anticipate that Bill S201 will move through the House and be passed. As Chair of the Canadian Coalition for Genetic Fairness, Bev has worked closely with Senator Cowan since 2012. We are very close to protecting genetic information and remain optimistic that Canada will finally pass legislation to protect this very private, complicated and personal information.

Susan Wright Chair, Board of Directors

Bev Heim-Myers Chief Executive Officer

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Susan Wright Chair, Board of Directors

All of this would not be possible without the loyalty, dedication and input from our community. Thanks to our donors and supporters we met our revenue goals this year, managed our expenses effectively, and directed dollars towards research, family services, education and advocacy. Our efforts to create operational efficiencies, implement risk-management measures and invest in technology infrastructure continue to be successful.

Throughout this annual report, you will see examples of how our people are applying our values to the important work that we do in improving lives for those who are impacted by Huntington disease. Thank you to the families, volunteers and donors who believe in our mission and work by our side to transform tomorrow together for those affected by Huntington disease.

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Bev Heim-Myers Chief Executive Officer

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Governance

At the Huntington Society, strategic direction drives what we do. Strategy starts with the Board of Directors. This team of dedicated volunteers, from across Canada, provides insight into our strategic direction and policies, ensures proper risk management measures are in place and makes certain that we demonstrate clear accountability to our members, donors and the public.

Board of DirectorsSusan WrightBrenda WasylowSean DewartGlenda RoweinDan DevlinDr. Ray TruantMack ErnoJonathan Genest-JourdainDr. Mark GuttmanDoris RamphosBob ScrivenRichard TaylorDan TremblayMarie-Claude FoisyDr. Brynne Stainsby

ChairVice ChairSecretaryTreasurerPast ChairChair, Research CouncilDirector at LargeDirector at LargeDirector at LargeDirector at LargeDirector at LargeDirector at LargeDirector at LargeHSQ RepresentativeYPAHD Representative

At a glanceNumber of board members: 15 Term: 2 years Number of consecutive terms: 3Attendance record: 90%

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Strategic priorities

1. Invest in world-class research to slow and prevent HD• Continue to build a critical

mass of HD research in Canada that will lead to treatments for HD, while encouraging global collaborations and knowledge transfer

• Enhance clinical research in Canada

• Continue to forge strong connections to individuals and families living with HD to ensure a strong base for potential clinical trial participation

2. Advocate for Canadians living with HD and enhance the services we provide to them• Maximize our connections

with families and individuals living with HD

• Lead efforts to end genetic discrimination

3. Increase awareness of HD and the Huntington Society• Create opportunities for

interested parties to become involved in HSC

• Leverage and further develop grassroots relationships

• Effectively tell our story• Continue our federal and

provincial advocacy efforts to end genetic discrimination and create a safe environment for people to tell their story

4. Demonstrate leadership locally, nationally and globally• Increase global

collaboration with HD service providers and organizations

• Inspire engagement and collaboration with internal and external stakeholders

• Influence a “Made in Canada” solution to end genetic discrimination

• Set the example for organizational stability, effectiveness & excellence

• Maximize attendance at events and build alliances for family support

• Investigate opportunities for joint projects with other service providers

5. Strengthen the focus on young people affected by HD and strengthen the services we provide to them• Build the numbers of youth

affiliated with the Society• Create a social media

initiative for youth • Build our leadership role

in the emerging HD global youth movement

• Educate and advocate for youth-specific concerns and initiatives

• Build the fundraising capacity of YPAHD, the Society’s youth chapter

6. Ensure financial and organizational stability, effectiveness and excellence• Achieve or exceed our

revenue growth targets• Enhance our financial and

organizational processes to build efficiencies, manage risk and build capacity

• Improve our processes to meet internal and external financial reporting requirements

• Retain and nurture a high-performing team

• Be nimble enough to take informed, measured risks on mission-specific goals

• Have the courage to be innovative

• Ensure effective Board governance

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Research

Members of HSC’s Research Council generously donate their time and expertise to review grant applications. They are established investigators and up-and-coming scientists with one goal in mind - to invest your generous donations in the most promising and innovative research opportunities that lead to treatments that slow or stop HD.

For decades, HSC’s strategic funding has helped to develop a critical mass of HD research in Canada. Canadian investigators are globally recognized as leaders in the field, and each year we receive more excellent research proposals than the year before. This year we saw a significant increase in the interest for our NEW PATHWAYS grant from ten to seventeen applications, in addition to our NAVIGATOR program receiving ten promising applications. The Research Council selected the successful recipients based on their rigorous peer review process.

Research CouncilDr. Ray Truant (Chair)Dr. Stephen Ferguson

Dr. Blair Leavitt Dr. Marcy MacDonald Dr. Lynn Raymond

Over 40 neuromuscular/neurodegenerative diseases are known to worsen through generations and with age. These diseases are caused by mutations in repeated DNA sequences. If one considers a gene as though it were a sentence such as THE CAT ATE THE FAT FAT RAT, typical mutations would be spelling errors, like THE GAT ATE THE FAT FAT RAT. This mutation would be the same in all family members, all with the same symptoms. In repeat diseases the mutation would be THE CAT ATE THE FAT FAT FAT FAT FAT RAT, and their children would inherit a further mutation; THE CAT ATE THE FAT FAT FAT FAT FAT FAT FAT FAT RAT and have more severe disease than their parents. These mutations continue as the patient ages, in affected tissues; progressively getting larger and making symptoms worse as they age. This project focuses on modulating this mutation to treat affected families. Being able to arrest or reverse this repeat mutation represents a therapeutic pathway to reduce disease progression and severity. The research team has a collection of compounds able to bind the repeat sequences, or the unusual structures that the repeats can form. They will screen this pre-selected library of compounds for their capacity to modulate repeat instability, highlighting therapeutic treatments by arresting or reversing the expansion mutations.

NAVIGATOR Research Program

2016 Competition Dr. Christopher Pearson

Sick KidsToronto

NEW PATHWAYSResearch Program

2016 Competition Dr. Jeff Carroll

Western WashingtonUniversity

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NEW PATHWAYSResearch Program

2016 Competition Dr. Jeff Carroll

Western WashingtonUniversity

Dr. Carroll is interested in developing better therapies for Huntington disease (HD). While HD is always caused by a mutation in a specific gene (called the ‘HD gene’ or the ‘Htt gene’), the normal role of this gene is not clear to scientists. Our idea is that future therapies for HD will be improved by a better understanding of the normal role of the HD gene. This is, in part, because we believe that the things which go wrong in cells expressing a mutant HD gene are likely to be related to the normal jobs this gene has in cells. Last year, a huge study of human HD patients suggested that variations in genes involved in the DNA repair process can actually change the age at which people experience HD symptoms. At the same time, there was a surprising result from one of the mouse studies, which suggested that the HD gene may be playing an unsuspected role in DNA repair. Dr. Carroll is proposing to follow up on this exciting, but so far preliminary, finding to try and understand in much greater detail whether, and how, the HD gene is involved in specific DNA repair pathways. If initial findings are validated, it could propose several new and exciting approaches to HD therapeutic development.

Partnership with Brain Canada leads to clinician-scientist-to-patient virtual networkTwo million dollars will go a long way to move HD research discovery forward. Thanks to the generosity of an anonymous donor and a partnership with Brain Canada, the Huntington Society launched the $2 million Huntington Society of Canada-Brain Canada-Clinician-Scientist-to-Patient Virtual Network Research Competition at the beginning of 2016.

Top thought leaders in HD research were invited by HSC to help establish a research competition that would not only be innovative, but also expedite research discovery to the HD Community. The call for research proposals was answered by incredibly competent teams and globally recognized researchers from across Canada. HD research has evolved and is now at a point where researchers and clinicians can connect more closely with each other and the HD community. Knowledge transfer from basic scientist to clinicians to the HD population is critical and exactly what this competition aims to achieve.

HSC is focused on honouring Canadian researchers, allowing for minimal international collaboration to strengthen the critical mass of Canadian research from the bench to the clinic to the client. Of the several research proposals received, the one that meets all the criteria of the competition will be funded. HSC’s partnership with Brain Canada is stronger and the door has been opened to launch this competition again. The successful recipients will be announced this fall.

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Clinical TrialsLed by the Huntington Society of Canada (HSC), the HD Consortium is implementing the Be Brave, Be Bold, Be Ready: Clinical Trials Readiness Initiative created in 2012. Meeting for the fourth time in four years, the HD Consortium, comprised of clinicians, researchers, HSC staff and family representatives, met on April 25th, 2016 to continue their work on building a national HD clinical trials strategy. The meeting was dedicated to the newly created HD Recruitment Strategy, increasing the number of HD clinics and clinical trials sites in Canada, as well as increasing the number of clinical trial participants. Key organizations were included to help streamline the work that needs to be accomplished, including:

• N2 (Network of Networks) A not-for-profit incorporated organization and an alliance of Canadian research networks and organizations working to enhance national clinical research capabilities and capacities.

• Clinical Trials Ontario An independent not-for-profit organization established with support from the Government of Ontario to work collaboratively with the clinical trials community, public and strategic partners to improve Ontario’s clinical trials environment and attract clinical trial investment to the province, while supporting the highest ethical and quality standards.

• Innovative Medicines Canada The national voice of Canada’s innovative pharmaceutical industry. Innovative Medicines advocates for policies that enable the discovery, development and commercialization of innovative medicines and vaccines that improve the lives of all Canadians. They support our members’ commitment to being valued partners in the Canadian healthcare system.

Since inception, the HD Consortium has developed tools to encourage clinicians, family members and those impacted by HD to participate in HD clinical trials. This first-of-its kind collaboration is taking HD clinical trials to a new level, based on a national all-inclusive approach which includes family representation at each meeting.

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Clinical Trials Advisory Council(CTAC) establishedFour lay organizations have teamed up and established the Clinical Trials Advisory Council (CTAC). The CTAC members include the Huntington Society of Canada (HSC), the European Huntington’s Disease Network (EHDN), the Huntington’s Disease Society of America (HDSA), and the Huntington’s Disease Association UK (HDA UK).

Collectively as CTAC, these four organizations will work together with pharmaceutical companies who wish to engage the HD community in HD clinical trial research. In anticipation of acceptable results from the IONIS-HTTRx study (the gene lowering study), Roche Pharmaceuticals, is preparing for the next steps of clinical development. Working with CTAC, Roche is planning on engaging patients’ involvement in the format of a virtual Advisory Board and will meet sometime this fall to discuss protocol considerations. This is an exciting opportunity for CTAC to get involved with a relevant organization in the field. The HD Consortium can expect to be updated as this work continues.

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Family Services

HD 101Our Family Services team frequently makes presentations about HD to families, healthcare professionals and long-term care staff. Now that job is a little easier. This past spring we launched HD 101: a series of customizable PowerPoint modules covering diagnosis, caregiving, clinical trials and more. With concise, up-to-date slides and videos at their fingertips, our team can now spend less time preparing and more time connecting.

New faces, new rolesThe past year saw a few notable changes to the Family Services team. After close to 30 years, we said goodbye to Manitoba Resource Centre Director Sandra Funk and welcomed Marla Benjamin. Replacing someone of Sandra’s calibre was no small task, but Marla has successfully hit the ground running.

Meanwhile, former Northern Ontario Resource Centre Director Angèle Bénard replaced retiring Director of Family Services and Community Development, Maribeth Meijer, bringing seven years of experience serving families affected by HD to her new role.

In September 2015, we also welcomed Jana Papke into the newly created position of Family Services Coordinator. As well as coordinating our education resources, Jana provides a first point of contact for anyone calling National Office who needs Family Services support.

Investing in professional developmentHD is a complicated disease. To make sure our resource centre directors and family service workers stay up to date on all the latest insights, HSC provides two semi-annual professional development events with generous support from the Charles Johnson Family Fund. Our fall 2015 session tackled some of the most challenging symptoms of HD: psychiatric symptoms and responsive behaviours. In the spring, we focused on hospice, palliative care and medical assistance in dying, ensuring our team is able to help families as they face end-of-life choices.

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Youth Mentorship Our world-leading youth mentorship program got even bigger this year, attracting new mentees, new mentors and new staff.

The program connects teens with older peers who understand the challenges of growing up in a family affected by HD. It gives parents the comfort of knowing that their child has someone to turn to when they need a sympathetic ear. Although our mentors volunteer because they want to help others, they also forge lasting friendships during the training process.

Thanks to information sessions at HSC’s national conferences and YPAHD Days, interest in the program continues to grow. We trained our third group of mentors in April 2016, increasing the total number of mentors across the country by 40%. Weimmediately matched them with mentees on our waiting list.

We are also seeing spin-off benefits from the program. One new mentor was so inspired by her training weekend, she immediately organized a Facebook auction when she returned home to Saskatoon, raising over $4,000 for families and research across Canada.

Now, with Southwestern Ontario Resource Centre Director Corey Janke adding his expertise as our newly appointed Mentorship Coach, we can expect even more success in the coming years.

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More face-to-face events Since 2012, HSC has held a special day of youth programming before our biennial National Conference. Organized by YPAHD, the Society’s youth chapter, it provides workshops, social events and a chance to connect with peers. However, participants told us that once every two years wasn’t enough.

We listened. In November, we held our first-ever Regional YPAHD Day. The event brought young people together in Calgary, Toronto and Halifax and connected them via videoconferencing. For many, it was their first introduction to YPAHD (which serves youth from coast-to-coast).

The event featured inspiring speakers, including HD researcher Dr. Jeff Carroll, and discussions on mentorship, caregiving, grief and loss, predictive testing and more. We incorporated plenty of fun, with laser tag, yoga and Spice Girls sing-alongs. Our participants came away with newfound positivity and friendships that are sure to last a lifetime.

YoungPeople

Affected By

HuntingtonDisease

(YPAHD)

Youth

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Continent-wide connectionsFurthering face-to-face connections, we sent two YPAHD members to attend the Huntington’s Disease Society of America convention in Baltimore in June 2016. Jenna Shea and Khalilah Alwani returned hugely energized, with contacts across the continent and plenty of ideas for YPAHD.

New resources for youthResearch suggests that the earlier in life children learn about Huntington disease, the better they cope later on. But how do you explain this disease in a way your child can understand? It’s a dilemma our families face every day. That’s why this year we helped fund a new interactive platform called HDYO Land. Created in partnership with the international Huntington Disease Youth Organization, the website helps children learn about HD in a positive, age-appropriate way.

Since it launched in December, the site has earned kudos around the world. According to parents, it’s “a tremendous tool,” a “fantastic resource” and — quite simply — “brilliant.”

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Raising Awareness

Light It Up 4 HD and Juvenile HDsparked a global movement. May is a very special month for Juvenile Huntington disease (JHD) and Huntington disease (HD). The month marks a collaboration between volunteers and staff to make special efforts to reach out and showcase the impact of JHD and HD in Canada. Throughout the spring, events in support of JHD and HD are held all over the country bringing awareness and raising funds for research and services.

Inspired by a volunteer responsible for the CN Tower’s involvement in 2015’s LightItUp4HD activities, HSC volunteers raised the bar this year by creating and implementing a social media campaign called #LightItUp4HD. Volunteers from across Canada chose specific monuments to light up in blue and purple, for HD and JHD respectively. The idea caught on and HD organizations from around the world joined the initiative and requested sites to #LightItUp4HD.

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Throughout the month of May, volunteers lit up buildings and posted them on their social media accounts with the hashtag #LightItUp4HD. Buildings from coast-to-coast were lit up and countries including Ireland, Scotland and Spain were involved.

A big thank you to every volunteer who took the time to #Lightitup4HD! Your efforts, persistence and enthusiasm woke up the world in a fun, entertaining and meaningful way. More people now know about JHD and HD! Your work was noticed.

Raising Huntington disease awareness in Canada can sometimes feel like a daunting task. That is where public service campaigns can come in handy. Broadcasters across Canada open up their airwaves to help charities, like the Huntington Society of Canada, raise awareness for their causes. In May, just in time for Huntington Disease Awareness month, HSC launched a new PSA campaign.

The campaign features volunteer members of the HD community and includes members of Eli and the Straw Man, a musical group comprised of seasoned musicians from Canada’s Niagara region. The Society is extremely grateful to those volunteers who agreed to participate in this year’s campaign. It is a true testament to the commitment and dedication of our community that members of HD families participated in a national public service campaign and shared their stories.

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Chapter DevelopmentUnbeatable volunteers

This year, HSC chapters and volunteers organized more than 90 events from

coast-to-coast, attracting more than 7,300 participants and raising a total of $1.1 million for Huntington research and family services.

Apart from the always-popular runs, walks, golf tournaments and Indys, our innovative

community raised money through billiard tournaments, zumbathons, tattooathons and

more. Our National Events and Chapter Development team was impressed with all

that was accomplished and are happy to offer their support to such a dedicated group of

volunteers across Canada.

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National Symposium 2015If you wanted the latest scoop on clinical trials, the 2015 National Symposium was a don’t-miss event. On October 17, 2015, top experts gathered to provide updates on cutting-edge developments and potential treatments, and explain the process of volunteering for clinical research.

Approximately 300 participants joined us in person at one of 13 teleconference sites across the country or live-streamed the event at home — a 20 per cent jump in attendance from our previous Symposium.

AdvocacyAdvocating for genetic fairnessWe continue to advocate for genetic fairness legislation for all Canadians and progress is being made with Bill S201, An Act to Prohibit and Prevent Genetic Discrimination.

The path to new legislation rarely runs smoothly. And that’s certainly the case with genetic fairness legislation. When Parliament rose last in June of 2015, it spelled an end to two genetic fairness bills: the government’s Bill C-68 and the Senate Bill S-201. Frustrating as it was to see those bills die, our efforts have achieved two important things: greater awareness of genetic discrimination in Canada and a strong political will to take action. The proof? During the recent federal election campaign, the three main political parties all agreed to pass laws banning genetic discrimination. Now, with a new Liberal government in power, we will be working closely with lawmakers to ensure it happens. We have also gained new allies over the past months.

Protecting genetic information is crucial. It ensures no one is denied insurance coverage or passed up for promotion because of their DNA. Furthermore, having that protection in place lets Canadians take advantage of individualized medicine tailored to their specific genetic makeup without fear of discrimination. Thanks to the support of the HD community and Canadians of all stripes, we have put this issue on the political radar.

In April, Senator Cowan’s Bill S201 was unanimously passed through the Senate to the House of Commons. And on May 3rd, MP Rob Oliphant, as sponsor of Bill S201 in the House, tabled first reading in the House. Bill S201 will go to second reading in the fall. “The scientific and

medical communities are stepping up to the plate to support the protection of genetic information in Canada. We are all working together to move this forward.”

Bev Heim-Myers, CEO

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Believe: Transforming Tomorrow Together

Launched in 2016, the Believe Campaign is in full motion. This two year campaign aims to bring new donors to the HD cause to raise $3 million for research and services to families, individuals and youth by 2017.

Julie Lawson TimmerHonourary Chair

Julie is a lawyer and author whose first novel, FIVE DAYS LEFT, involved a character with Huntington disease. Julie’s research for the book led her to become involved in fundraising for the Huntington Disease Society of America. After learning about the Huntington Society of Canada’s Believe Campaign, she happily redirected her HD-related efforts to this side of the border. Julie was born in Saskatoon, Saskatchewan, and raised in Stratford, Ontario. She now lives in Ann Arbor, Michigan.

Having successfully secured over $1 million dollars to date, a world free from the devastation of Huntington disease could not come soon enough. The Campaign Cabinet (listed below) believes a brighter future is not only possible but palpable.

“We are moving quickly to viable treatments. Now is the time to ensure we have the resources to fund the research that leads to those treatments and to prepare for clinical trials.”

Bev Heim-Myers, CEO

Heather is a Program Director with 32 years of experience in the financial sector. She works primarily on large and highly complicated initiatives which in recent years have been focused in Asia. Additionally she is a CPA-CMA in good standing. Heather’s affiliation with the Huntington Society of Canada started in 2001 when her father was diagnosed with Huntington disease. She continues to provide volunteer time to HSC although caregiving has been increasingly taking up her spare time. In the past, Heather has been on the board of directors for a Cuban Relief charity. Heather lives in Waterloo, Ontario and also supports animal rescue.

Heather Heick

Julie Lawson TimmerHonourary Chair

CAMPAIGN CABINET

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Jane lives in White Rock, B.C. with her husband Paul, who was diagnosed with HD in 2013. As a committed volunteer, Jane has helped raise millions of dollars over the years for local organizations such as the Arts Umbrella, Southridge School, the YMCA and Peace Arch Hospital. Today, the former special-needs teacher is excited to leverage her considerable talent and experience for HSC’s Believe campaign, making a difference for a cause very close to her heart.

Jane Manning

Vern is currently an Education Professor at the University of Winnipeg and enjoys working with young, aspiring teachers very much. Two of his more interesting projects include a program that places education students in Germany where they teach English to marginalized Turkish students, and a program where beginning teachers do extensive service learning activities with disadvantaged students in Winnipeg. Vern has worked hard for the Huntington Society of Canada for more than 40 years, both locally and nationally. Vern’s wife Ellen was a member of the first Board of HSC and started the first Resource Centre and Chapter in Winnipeg. Vern has also served on the Board for many years and as Board chair for four years. Vern is currently Winnipeg Chapter president.

Vern Barrett

Brenda is a CPA and is Vice President of Finance for JNE Welding in Saskatoon, Saskatchewan. Brenda has lost several of her family members to HD and spearheaded the inaugural HD Walk for a Cure in Saskatchewan a number of years ago. She has been involved with HD at both the community and the national level for many years. She currently sits as Vice Chair of the Board of Directors of Huntington Society of Canada. She is also Chair of the NSBA (a preeminent business association in Saskatchewan) and Treasurer on the Board of Directors of the Safety Association of Saskatchewan Manufacturers.

Brenda Wasylow

Dan has been a significant supporter of the Huntington Society of Canada for more than ten years. Dan’s entrepreneurial background as a successful co-founder of a bakery production company in Toronto brought business acumen to the HSC Board. Dan has served as an HSC Board Member for several years and more recently led the HSC Board as Chair. Currently Dan serves as past chair. Dan, his wife Jill and his two children have been generous with their time in supporting HSC events.

Dan Devlin

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Our donors

With gratitudeOur story is a powerful story; a story of hope, a story of a community of caring people who pull together to change the reality for families living with Huntington disease. With your support we have good reason to be optimistic. Thank you for believing in the work we do and for helping us transform tomorrow. You make a difference each and everyday in the lives of people affected by Huntington disease.

Visionary donors$500 000 and aboveAnonymous (1)Dan & Jill DevlinLembit & Karen JanesKrembil Foundation

Cornerstone donors$250 000 and aboveJohn & Anne BraceThe Estate of Ivy Robbins OakleyMike & Nicole Tevlin

Leadership donors$100 000 and aboveCIBC Charitable FoundationMaxim Power Corp.

Distinguished donors$25 000 and above The John and Judy Bragg Family FoundationCBRE CanadaThe Connor, Clark & Lunn FoundationRobert Evans Investment Counsel LimitedThe Halatsis Family FoundationHealthPartnersThe Estate of Anneliese KeudelJohn & Diane KuzykMichael & Jane LayThe Mark Mercier FoundationPfizer Inc.The Douglas Utting Foundation

Supporters$10 000 and aboveAnonymous (1)Vern & Ellen BarrettNorman BloomBrelin Holdings Ltd.Colin & Leah CraigKindred Home CareStephen & Devon GubastaEstate of Jacob Heinrich AdrianJNE Welding Inc. The Kennedy E. Kowalski Charitable FoundationMarlene J. LittleMancal CorporationManitoba Community Services Council Inc.The Mark Mercier FoundationF.K. Morrow FoundationHeather L. RyallDavid & Kelli StoroshenkoDavid Wilson

Partners$5 000 and aboveAnonymous (1)Bell CanadaThe Charles Johnson Charitable FundBob & Brenda ComtoisDream Office Management CorpKit & Susan GrantKim GravengardGregory & Mary Hanson

Hereditary Disease FoundationWilliam D. HughesHydro One, Employee’s and Pensioner’s Charity Trust FundInnovative Medicines Canada (formerly Rx&D)Ionis PharmaceuticalsDonald & Frances MacFarlaneJohn M. & Bernice Parrott FoundationOxford PropertiesRideau Carleton Raceway Holdings Ltd.Rotary Club of Calgary OlympicS & B Restoration Inc., O/A Servicemaster of PeterboroughRobert & Lenita SchellenbergBruce & Elaine TaylorJoan TweedleThe Winnipeg FoundationAndrew & Tory WrightM. Van Noort & Sons Bulb Company Limited

Friends$1 000 and aboveAnonymous (13)0774056 B.C. Ltd.914906 Alberta Ltd. O/A Cash in TimeAll Peace PetroleumChristine AndrewsAsl Agrodrain LimitedRay Bailey

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Chris & Dawn BaillieBaker & Cole, Barristers, Solicitors, NotariesNeil BalbirnieBarteaux DurnfordPaul & Joanne BatemanBentall Kennedy (Canada) LPJoe & Antoinette BerridgeBlackwood Partners Inc.Kevin & Cathy BlakeThe BLG FoundationDr. Maurice Bloch & Dr. Susan ComayBluewater InvestmentsThe Boiler Inspection & Insurance Co. CanadaBoyd Auto BodyFrank & Shelley BraunBrookfield Office Properties Management LPRoland BrownMarcene BruntjenMarilyn BurtCadillac Fairview Corporation LimitedCambridge & North Dumfries Community FoundationCambridge Memorial Hospital Staff TrustJames & Sharon CameronStephen Easey & Becky E. CameronLarry & Louise CampbellCanadian Pacific Railroad Ltd.CanFirst Capital ManagementAlan & Susan CarsonCarson Dunlop & AssociatesCarttera Private Equities Inc.CBRE LimitedNorman & Janet ChandlerCharron Warehousing Inc.Paul ChinChmiel Architects IncClearwater Fine Foods Inc.In Memory of Donald ColpPaul & Leisa ConnellyArthur C. ConradRoss & Joanne CorkishCorner Brook Area Rep. Winston & Barbara CotnamCameron & Dijana CrawfordMichael & Kim DavidmanRobert & Donna Davis

Sean Dewart & Lori NewtonDistrict Realty CorporationDonald B. & Marjorie E. McIntyre FundDr. D.B. Sanders Medicine Professional CorporationJ.O. DreesRay & Pat DrouillardNeil Smith & Lori DunsmoreDurham Area Rep. Larry & Dianne EckerEconomical Mutual Insurance CompanyMichael & Tracey EllenwoodEllison Travel & ToursEnvironmental DesignMack & Amanda ErnoKeith & Bev EvertsShirley EybelRoss FarewellLaura FioriniFirm Leader Canada Inc.Cyndy ForsythFraternal Order of Eagles Calgary Heritage #2098M.W. FreundAndrew Brown & Teresa GibsonJo-Anne GibsonChris GiffinBruce & Suzanne GillespieBlake & Belinda GoldringGottardo Group of CompaniesGrand Chapter of Saskatchewan, Order of the Eastern StarGrande Pipe Services Inc.Geoff & Anna GrantRichard & Janice GreenGreiner-Pacaud Management AssociatesGlenn & Donna GrovesGTX Logistics Inc.John & Sally GuggenheimerGWL Realty Advisors Inc.Sheila HamblinDouglas & Diane HammerGerard & Sandra HandfieldHank Dekoning Ltd.Joseph & Loralee HaysTerence & Roberta HeenanScott & Margaret Heffern

Dave Myers & Bev Heim-MyersBridget HennigarJohn & Jean HicksonHillhurst Odd Fellow Lodge No. 46Jeffrey & Deborah HoffmanDustin HollingworthJeffrey & Lee Ann HoyemEarnestine M. HoyemJoseph & Susan HunterIntegrity Reclamation Seismic Services Inc.Invar Building CorporationTim IrwinJade Cash ATMKen & Shirley JansenJohn Deere Foundation of CanadaTara Johnson-OuelletteBarry & Catherine JoslinKeddie’sJohanne KemmlerDonald KennedyKingSett Capital Partners

Garry & Valarie KinziePeter & Derry KnaakMark KrugerChristine LawrieDaniel Timmer & Julie Lawson TimmerRob LaycockHelen LeeLeeswood Design/Build Inc.Little, Masson & Reid Professional CorporationEmile & Janet LongpreLonnie’s AutobodyLouis Riel School DivisionShawn & Cathy LukenDaniel MacEachernManulife Financial Real Estate DivisionSusan MartinBrenda MasonMattamy Homes LimitedMaunders McNeil Foundation Inc.Elizabeth McArthurJanice L. McDonagh

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Edward McDonnellMaureen McKeatingLyall G. McLeanMcMurray Business MachinesMD+A Health Solutions Inc.Menkes Developments Ltd.Metrus Properties LimitedMilestone Property Management LimitedJames & Kristi-Jayne MillerEleanor MisenerHolly MontgomeryEstate of Arvilla MooreMorguard Investments LimitedN.H.D. Developments LimitedMichael D. NaishKenneth & Lois NeufeldNewfoundland & Labrador ChpaterEstate of Miss Elizabeth Vivian NifortWayne NobleNorth Okanagan Closet Specialists Ltd.Northam Realty Advisors LimitedNortraxNurse Chevrolet Cadillac Ltd.Nutrition Partners Inc.Oakville Community FoundationJoyce O’BrienParamount PropertiesPat’s Auto SupplyHarold & Sharaine PattersonEstate of Johann Franz Heinrich PennerPinchin Ltd.Policella Farms SalesBarbara PotashProgressive Waste SolutionsPursuit Massage Therapy and Sport Recovery CentreRandy QuintalR. A. Utting & Associates Inc.Steven & Doris RamphosBrenda RandallRBC FoundationRBC Royal BankRonald & Jane ReiderGisele M. ReklitisJonathan Ring

Risk CheckRichard & Margaret RivardRM of 2 BordersRobert M. Heenan Sales Ltd.Dr. & John & Mary-Lou RoderGlenda RoweinEd RoweinRoyal Bank of CanadaS & A Industrial Maintenance Ltd.Jason SargentSaskatoon & Area ChatperChristie SavageGerry SchmidtAlvin L. SchurLarry & Betty Ann SchurShaw Communications Inc.Sheehan’s Holdings Inc.Sirius America Insurance CompanyLloyd SkeochLaurie & Ann SkinnerSlate Asset Management LPLinda SmithJohn & Victoria SmithMeghan SniderSouthern Shore Hydraulics Inc.Barb Eade-Stainsby and John Stainsby Mark & Kim StainsbyBarbara A. StanleyHeath SterlingNorma StevensGeri StewartOksana SuchowerskySun Life Financial Inc.Ian & Judy SutherlandRaymond & Rosilyn SwitzerT.J. Gittens Inc.Wayne D. Carter & Amber TaylorTeepee Creek HaulingTELUS CorporationKevin & Lynn TendlerMartin J. Olson & Marlene TeskeThe Orlando CorporationElias TheodossiouBernard ThiessenValerie ThomasNancy ThorntonTikkun 18 Foundation

Transatlantic ReinsuranceTri 1 Events Ltd.United Way of Greater TorontoUnited Way of the Lower MainlandUtilities Management Solutions Ltd. (UMS)Timothy & Elinor UttingLars ValmestadSusan Van AarsenRhea Van BredaVeresan Energy Infrastructure Inc.Ariel WalkerMaurice & Gloria WalshBrenda WasylowJohn & Josie WatsonLinda WeberWilliam F. Hayball Charitable FoundationCliff & Ann WilliamsGary & Lynn WilsonCraig WingAndrew & Nancy WiswellJohn Sankey & Susan E. WrightDean & Lori YoungPaul & Marguerite Zakus

Our Champions of HopeTo our dedicated donors who support the Huntington Society on a monthly basis, thank you. You provide a base of funds to allow us to plan and provide support on a consistent basis.Anonymous (5) Lewis & Judy ArnoldRonald AshcroftPeter & Sigrid AzzopardiRay BaileySarah BakerNicola BanghamPamela J. BardenTrevor & Rosalind BardenDoris BartoliniJean Baxter PierreJean BeakhouseJennifer BeattyDeborah Bedley

William & Corinne BeesAngèle BénardMia BergmanNorma BertrandMelynda BottorffJean & Jim BouldAnne & John BraceBarbara BrittainTerrill A. BuddMarty BudnykPeri BulcanJoanne CadrinDebi CampbellLarry CampbellMarjorie CampbellRob & Shauna CampbellErin CareyPeggy L. CarmichaelPaul CarsonRosemary J. CarverAndrew & Cheryl CassidyKelly S. Castonguay-MackGreg Childs & Kim Oxford-ChildsNancy ClementStephen & Barbara ClementLarissa CoboJennifer CoelhoIn Memory of Donald ColpRichard Conte & Bonnie KaplanJoyce CookPhyllis CookM. Elaine CooperMargaret CooperMark & Holly CouchChristopher & Elisha CoughlerPeter L. CranstonCameron CrawfordJan CrowleyMegan CrowleyGlen & Danette CunnaneBonnie CutlerClarence CutlerMichael & Sadie CyrenneRobert & Donna DavisSandro De SantisJulia DeckJerome & Yvonne DelaneyNeil & Barbara DennisKendall DennisJohn & Jean DeweyDoris A. Dickson

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Anne M. DonohoeLisa Dowding CarterLinda A. DreweDelima DubieLeatha DudraNeil Smith & Lori DunsmoreIrene EllisRandy & Renee EllisMack & Amanda ErnoAndrea EvansCornie FastJanice D. FastJennie FerenczyGloria H. FergusonDoris H. FigueroaGary & Lisa FitzgeraldKathleen E. FitzgibbonsRonald & Mary FlavelleDawn FlemingSheelagh FlynnTerry FoordCyndy ForsythArnold & Maria FossDavid & Denise FrancisSandra FunkDwight FynnCaroline & Michael GainesLeslie GarlandLacey GartnerSuzette GauthierKim GeorgeDeborah C. GermanAlice GillThe late Margaret GilmourLuc-Andre GirardWard & Lois GlenneyJames & Susan GodeyLouise GoodeWayne GoodeyLila GouldJustin & Allison GranekThe Late Margaret E. Gray Ray GreenDawn GroszkoNancy GwinTim & Lara HallBonnie HamiltonSteven & Tammy HanlanEdgar HarderPhyllis HarveyRaili HautaniemiAlan & Susan HayBev Heim-Myers

Lois M. HetheringtonAmanda HigdonHarry & Marjorie HigdonSteve & Terry HigginsKathleen HildebrandJeffrey & Deborah HoffmanAdam & Melissa HoosonNorman & Cathy HowarthAlan J. HowellJ. Douglas & Donna HowleyEarnestine M. HoyemJeffrey & Lee Ann HoyemThomas & Leslie HughesGary & Dayle HumphreysJoseph & Susan HunterBruce InnesMarjorie JacksonCarol JancDoreen JanesG. Ian & Marion JanesKen & Shirley JansenTara Johnson-OuelletteColleen JohnstonJoan E. JohnstonWilda JohnstonJames JonesBarry & Cathy JoslinRay & Grace KaattariJoanne Kaattari

Elisabeth KarnerAndrew KasterScott KellyRoy & Debbie KendallJohn & Ann KennethMalcolm & Sandra KerrRonald & Gladys KilbeyNicholas KinsmanWade John KonecsniMark James KrugerDan & Rebecca KutzCarl Snyder & Amy Lajoie-SnyderMurray LanceleySharon LangilleRob LaycockMaureen LeachRon & Shelley LeaderIrvin & Grace LeboldKama LeierKarin LenhardtAurora LettfetiPeter LevedagJacqueline LingardPauline LingardStephen & Heather LingardJason & Kim LittleBlythe LodwickKen & Margaret Longlade

Janet E. LongpreNorma LudwigShawn & Cathy LukenMargaret LythgoeLuciille MacdonaldLawrence & Catherine MacDougallJan MalcolmElizabeth G. ManiqueEric MarshallSusan MartinKrista McCannT.E. McCawJanice McDonaghIrene McDonaldJohn McDonaldEdward McDonnellEarle & Phoebe McEwenGlenn McFaddenJim & Jacqueline McGillivrayNancy McHardyDebra McIntyreMichael Spicer & Christina McKayShirley McKinneySusan McKinneyLyall G. McLeanMaribeth MeijerRobert & Joan MercerJohn & Betty MerchantRoy & Anna MetcalfeJames & Kristi-Jayne S. MillerLucas Miller & Shelly BezansonRobert & Margaret MillikenBradley J. MilneGeoffrey MilneTim & Arlene MoherJim O’Keefe & Diane MoloneyGailene K. MooreBill & Bonnie MortonSandra J. MosherJune MurphyValerie Nabb & Colin ChestermanMike Neill & Anna CrapanzanoValerie NettletonPeter Neuman & Cheryl McKenna NeumanBernardo Cavalcanti & Amy J. NicholJune Nichol

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Ann PaceMargaret PaceA. PadmarajW. B. PearsonJoyce PeatfieldRuth PellmannPhyllis PennerFrank Peters & Wendy VerbeekMickey & Margaret PikorBlaine & Donna PoffVicki Lynn PoirierGordon Pratt & Tanya HansenFrances PrestonEarl & Nancie QuigleyR. G. Heenan Enterprises Ltd.Steve RaetsenCarol RaymondBarb ReichertDemetrios & Penny ReklitisLil RichardsonMike & Terri RobbinsSusan J. Robertson-KrezelJohn & Mary-Lou RoderGuy & Trudy RogersBurt RollinsKen & Theresa RuefferScott Barrows & Nicole E. RussellMarie M. SampsonScott J. SampsonRon SandalackThe late Marian SchalinPaul & Sandy SchellenbergKeith & Linda ShakespeareWalter & Eileen ShankmanGeorge A. ShentonNancy E. SimpsonM. Alene SkikavichLaurie & Ann SkinnerJanet M. SladeL. Eveleigh SmithLinda SmithAllan & Rochelle SmithJohn & Victoria SmithSandra SorsdahlAnne SpadoniJohn M. StainsbyMark & Kim StainsbyLinda StarrTerry & Ruth StortzJeannette SuzukiCamillia Switzer

Dave SwitzerRaymond & Rosilyn SwitzerJames & Deborah TalbertAntonietta TavernitiKevin TessnerColete TetraultLori & David ThomasValerie ThomasMary TierneyLinda J. TingmanJan ToddJohn TomiukWilliam & Janet TrimNancy TrolleyDiana TuerJ. Stephen TweedleHeather UrquhartGinny Van AllenRhea Van BredaBenjamin van der HamKristina VandervoortGerald & Gerda VennemaGeorge & Lynn VooroKathryn WalkomJean D. WallaceMareile WalterPatrick & Ann WannamakerThe late Mary E. WattersonAllan & Gillian WeatherallLinda WeberKristen WeersinkMarjorie L. WelchChristine WheelhouseDonna M. WhitePatricia WhiteCarl WilburDominic WongSusan WoodSusan Wright & John SankeyDavid & Aleshia ZabokRoy & Gail ZabokDonna (Vibert) Zentner

Our Amaryllis HeroesTo those who have supported the Amaryllis Campaign and have sold over sixty Amaryllis kits this year, thank you. Your efforts are deeply appreciated.Murray & Sharon AssmanB.C. Chapter Joe & Antoinette Berridge

Cathy BlakeLarry & Louise CampbellCamrose Chapter Janette CharltonRoss & Joanne CorkishEdmonton Area ChapterEssex County ChapterBev EvertsGlenn & Donna GrovesHalifax/ Dartmouth Region ChapterSheila HamblinScott & Margaret HeffernBev Heim-MyersJeffrey & Deborah HoffmanGarry & Valarie KinzieRob LaycockLeon Frazer & Associates Inc.Jen LoveMaureen MunroeNiagara ChapterJoyce O’BrienOttawa and Area ChapterPeace Country ChapterPopular River MineHeather PottsPrince Edward Island ChapterJohn & Mary-Lou RoderGlenda RoweinRobert & Lenita SchellenbergJohn ShannonMeghan SniderSouthern Alberta ChapterGeri StewartAmber TaylorGordon & Reta TaylorLynn TendlerMarlene TeskeNancy ThorntonJanet TrimSusan Van AarsenRhea Van BredaAriel WalkerAlfons & Maureen WeersinkGary & Lynn WilsonWinnipeg ChapterRobert & Faith Wood

Family FundsPartners for the future: Our Family Funds holders create a lasting legacy and honour their family at the same time. Thank you to donors who have chosen to honour their family and loved ones by establishing a Family Fund.A. C. Emerick & Family FundAnnie J. Cutler Memorial FundBarbara Dorr Research FundBarrett Research FundBezeau Family FundBill Nichol Family FundBloom Family FundBrenda Wasylow’s Hope FundChaplin Family FundCraig Family FundCranston-Dorr Family FundDiane Kuzyk Family FundGarth Shuster Family FundGoodman Family FundGrange John Taylor FundGuggenheimer Family Endowment FundHeenan Endowment Family FundHiggins Family FundIrwin Family FundJames Jerome Great Canadians FundJanice Johnson Family FundJoan Skeoch Family FundKatie McAlindon Memorial FundKelly Bumstead Family FundKidd Family FundLaura’s Hope FundLingard Family FundLiz and Ray Bailey Family FundMarjorie’s Daughters and FriendsMcArthur Family Fund in Memory of Megan McArthurMcGregor Norm FundNeuman Family FundRick and Norma Brock FundReider Family FundReklitis Family FundSally Stainsby Family Fund

28%increase of followers on Facebook

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Skene/Stevens Family Fund Bob and NormaSterling Family FundSusan and Joe Hunter Family FundSylvia Hickson Family FundUtting Family FundWannamaker Family FundWiswell Family FundWright Family Fund in Memory of Helen-Mary WrightYeung Family FundZantingh Family Fund

Consecutive year donorsThank you to those donors who have contributed to the Huntington Society of Canada for ten years or more. We deeply appreciate your dedication and loyalty.Anonymous (42) Deborah M. AcresLynne AdamsJohn AdrianClaire L. AndoffChristine AndrewsLynne AdamsJohn AdrianClaire L. AndoffChristine AndrewsDoug & Nancy AngleLewis & Judy ArnoldRonald & M. A. AshcroftMurray & Sharon AssmanPeter Azzopardi & Sigrid AzzopardiRalph & Margo BaileyRay BaileySamuel & Connie BakerNathan & Amy BakerNicola BanghamPamela J. BardenTrevor & Rosalind BardenHenry BarkinMargaret BarrVern & Ellen BarrettDoris BartoliniRuth M. BeachKatherine J. BeattieRoger & Marion BeaupreGreg & Deborah Bedley

William & Corinne BeesJacob & Maria BerendsenIvan BerggrunJoe & Antoinette BerridgeNorma BertrandChristian BezardRobert & Lou Ann BigleyCarla BlackmoreNorman BloomThomas & Martha Blouw

Bluewater Investment ManagementFrancis C. BobzenerTravis & Melynda BottorffJim & Jean BouldJames & Denise BowenIan & Geraldine BowesJeff Bowes & Lisa McLellan-BowesFlorence D. BowiePatricia BowieJohn & Anne BraceMaria E. BradfordThe Late Ivy M. BraunAgnes BreadnerScott & Sue BrintnellLarry & Barbara BrittainAllan BrocklebankCindy BrownRaymond & Janice BrownThelma BrownBru-Ben Development Co. LimitedMarcene BruntjenPercy Bubis

Evelyne Buchbinder-WatierStuart & Marg BurkholderEugene D. BurlesJoanne CadrinCraig Cameron & Sandra OdendahlJames & Sharon CameronJack Maffin & Debi CampbellLarry Campbell

Larry & Louise CampbellRob & Shauna CampbellSheila CardoneCarlyle & District Donor’s ChoiceDouglas & Jean H. CarmanPeggy CarmichaelSandra CarmichaelCarnduff & District Donor’s ChoiceRosemary J. CarverAndrew & Cheryl CassidyDiana CerenziaBruce & Gina ChambersChambers Crane Rental Ltd.Wallen Chang-HongGary & Janette CharltonCharron Warehousing Inc.Carole ChenierJohn D. ChesterSteven & Nathalie ChopchikPhyllis ClarkeGlen & Karen CleggRobert & Helen Coates

Ruby & Gertrude CobrinW. Peter CockburnDavid & Sharon ColeElaine ColeGerry & Doreen ColeNeal H. CollinsTerry Collins & Grace SmythIn Memory of Donald ColpChristine ColtartShane ComtoisPaul & Leisa ConnellyColin & Susan CookJoyce CookPhyllis CookJohn CoolenMargaret CooperRoss & Joanne CorkishRita CostantiniWinston & Barbara CotnamCatherine M. CottonMark & Holly CouchMichael & Joan CowleyCameron & Dijana CrawfordPeter J. & Judith CrawfordDave & Joan CreerJennifer CreerMary Lou CrevierJan CrowleyMichael CruickshankHelen CurranSterling & Bonnie CutlerClarence CutlerMichael & Sadie CyrenneAron B. DahlAnthony D’AlessandroArthur & Nancy DalgarnoJudy-Kay DarbyJames and Joyce DaveyWilliam & Shirley DavidsonLeonard & Patricia DaviesRobert & Donna DavisKathleen De ArmondSandro De SantisGarrett & Julia DeckNeil & Gail De KoningJerome & Yvonne DelaneyKendall DennisDan & Jill DevlinMarc & Janet DevlinDon & June DickeyDino & Janice DiLaudoStafford DobbinJohn Dollekamp

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Walter & Aline DomagalaAnne DonohoeJames M. DouglasKenneth J. DowleRay & Pat DrouillardLeatha DudraRaymond & Marilyn DyckThomas H. DyckBarb Eade-Stainsby and John Stainsby Ebsco Industries Inc.David & Ann EdgeErin J. Cull Insurance Agency Inc.Cheryl EssonEsterhazy & District Donor’s ChoiceMarguerite EvansF.A.Y. Farms Ltd.Robert & Katherine FaderRondeau FentonJennie FerenczyGloria H. FergusonFides Real Estate LimitedPaul FinkKathleen E. FitzgibbonsRonald & Mary FlavelleStefan & Wilhelmina FleckDawn FlemingSamuel FlemingCarol ForbesArnold & Maria FossJ. Peter Foster & Carol FosterGeorge & Elizabeth FrancisGeorge & Ellen FraserM.W. FreundJeffrey FriedmanDwight P. FynnMichael & Caroline GainesEdmundas GataveckasBev & Marion GenoeDeborah GermanAlexander and Alice GibsonAlbert GignacAlice GillShirley GillespieThe Late Margaret GilmourPeter & Kathleen GirardWard & Lois GlenneyPhyllis GlinzJames & Susan GodeyDavina A. GoldenGerald Goldenberg

Barbara GoldringLouise E. GoodeWayne GoodeyLila Gould & the Late Stephen Gould The late Margaret E. Gray

The late Mervyn R. GreenKevin Brayford & Dawn GroszkoNancy GwinTim & Lara HallMurray & Lois HallBonnie HamiltonSteven & Tammy HanlanRobert & Monica HansenGregory & Mary HansonEdgar & Joanne HarderJudy HardingFrederick & Deanna HarrisPhyllis HarveyStella HeathmanWillis HebbTerence & Roberta HeenanHeather M. HeickVic HeinGary & Rosemary HeislerJacob HendriksLois M. HetheringtonMary HickeyJohn & Jean HicksonAmanda Higdon

Calvin JonesWilliam B. JonesJoanne KaattariJohn KartechnerEldon & Mildred KayAllan Keeping & Rae KeepingScott KellyPeter & Gail KeltonRoy & Debbie KendallJohn & Ann KennethArnold & Gladys KerrRonald & Gladys KilbeyMarc & Joan KilgourKipling & District Donor’s ChoiceNicholas and Judith KirtonDale & Gwenda KleinColleen KnuttilaMitchell & Luana KosavitchJohn & Doreen KuliJohn & Diane KuzykDiane LabrecheVernon & Susan LaFranceGilles Lahaie & Suzanne Lahaie

J. Douglas & Donna HowleyEarnestine M. HoyemJeffrey & Lee Ann HoyemOrest & Mary HrynewichMarylou HughesThomas & Leslie HughesJoseph & Susan HunterPeter HurdRobb HurstFrank & Nancy IacobucciTom Faguy & Lynn InglisInternational Brotherhood of Electrical Workers, Local #353Invar Building CorporationTim IrwinHenry IsaakKaren IsaakMarjorie JacksonDoreen JanesG. Ian & Marion JanesVerner & Wendy JanzAlfreda JeffriesAaron JesinCathy JohnsonDenis E. Johnson

Harry & Marjorie HigdonRobert & Anne HoldingGerry & Judith HolmesAdam & Melissa HoosonBeatrix HornAlan J. Howell

Tara Johnson-OuelletteDavid & Diane JohnstonJ. Grant & Phyllis JohnstonGerald & Jill JohnstonJoan E. JohnstonAudrey E. Jones

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Jane LaidlawBarbara LambMurray LanceleyJoseph B. LandryKenneth LangilleSharon LangilleBetty M. LarkworthyBruce & Alison LatimerChristine LawrieD. Jean LawsonMichael & Jane LayRob LaycockEdwin A. Le Blanc, Q.C.Ron & Shelley LeaderGene & Dorothy LeavittIrvin & Grace LeboldEd & Sharon LedyitStuart & Doris LeeHelen LeeKarin LenhardtAurora LettfetiNickolas & Kathleen LevchukJacqueline LingardPauline LingardStephen & Heather LingardMarcel & Margaret LitalienDonald & Jean LivingsEmile & Janet LongpreMary LothamerStanley & Karen LougheedJen LoveNorma LudwigShawn & Cathy LukenMargaret LythgoeIan & Ann MacDonaldIan & Lucille MacDonaldLawrence & Catherine MacDougallMolly MaceWilliam & Diana MacKayConstance MacKinnonRichard & Elizabeth MadterJan MalcolmSid Goncalves & Elizabeth G. ManiqueMaria ManiqueL. Maxine MardellGwen MartinThomas & Theresa MartinV. Madeline MartinT. Wayne & Barbara MartinPaul & June MathewsThomas & Pauliine Mattinson

Maunders McNeil Foundation Inc.Maxim Power Corp.A. MaziarczykElizabeth McArthurEva McBurnieJanice L. McDonaghIrene McDonaldJohn & Joanne McDonaldArlene McDougallJim & Jacqueline McGillivrayDebra McIntyreMarjorie McIntyreJames McKellarShirley M. McKinneyLyall G. McLeanGeoff Page & Kelly McLellan-PageJack & Mary McMillanRobert & Letitia McMurrayPatricia McNeiceDan & Marianne McQueenTadeusz A. MejznerMenkes Developments Ltd.Robert & Joan MercerJohn & Betty MerchantThomas & Joann MeredithHelen MerrillHelen M. MillerJames & Kristi-Jayne MillerLucas Miller & Shelly BezansonRobert & Margaret MillikenRichard & Lynn MinerBernice MinshullBrett & Janet MitchellHelen MitchellHilda MitzKen MoarTim & Arlene MoherLaurie MoirGunnar & Britt MollerstedtJo-Anne MonkHolly MontgomeryGailene K. MooreSally MorellMorguard Investments LimitedCyril & Sharon MoyseSara MuellerWilliam P. MullerEdward & June MurphyColin Chesterman

& Valerie J. NabbMichael D. NaishBrian & Beverley NattressE. Marie NeilVerna I. NeilErnest & Carole NeudoerfferPeter Neuman & Cheryl McKenna NeumanTim & Darlene NeumanJune NicholGreville & Joyce NifortBrent & Patricia NolanLorraine M. NorwoodJoyce O’BrienElizabeth OldfordAndrea OosterloOPG Employees & Pensioners Charity TrustDon O’RourkeSean O’SullivanOutlook Donor’s ChoiceWynifred OverendAnn PaceMargaret PaceAshok J. PadmarajNeil L. ParentMurray & Adele PaskHarold & Sharaine PattersonHugh PattersonLois Y. PearceRichard & Olga PearsonW. B. PearsonJoyce PeatfieldJohn & Mary PelletierPeter Penner and Clarice PennerLyle & Gail PerkinsG. R.and Elizabeth PetersMike PfaffJudy R. PierceMickey & Margaret PikorTrevor & Kari PlandowskiBlaine & Donna PoffNicolai & Nadia PopoviciAlan & Susan PorteousStephen & Heather PottsAlex PowellFrances PrestonEleanor ProctorJohn & Margaret PughEric G. PullamPatricia G. PyneEarl & Nancie Quigley

R. G. Heenan Enterprises Ltd.Anne C. RameyBrenda RandallBrian & Susan RattenburyCarol RaymondRBC FoundationFred & Carol ReeveBarb ReichertRonald & Jane ReiderDemetrios & Penny ReklitisGisele M. ReklitisRollie & Terresca RemillardA. Noreen RichardArnold & Lillian RichardsonFranklin T. RichmondH.S. Riley and Deborah RileyVictor & Patricia RivestSusan J. Robertson-KrezelJohn & Mary-Lou RoderGuy & Trudy RogersBurt & Kathleen RollinsDon RossWayne & Gail RoszlLeander & Gail RothGlenda RoweinKen & Theresa RuefferScott Barrows & Nicole E. RussellPerie A. SaeedDavid SalieMarie M. SampsonScott & Joanne SampsonPatricia SaullIsabel SaundersLindsey SaundersRobert & Lenita SchellenbergPhilip & Diane SchieferRobert SchilkDavid G. SchoalesCarl S. ScottShirley ScottGeorge & Evelyn SeimKeith & Linda ShakespeareGeorge ShentonScott & Celina ShojiJoe & Paula SilvaBill & Michelle SilverbergNancy E. SimpsonLorne SinclairDianne SkikavichM. Alene SkikavichLaurie & Ann SkinnerBev & Elaine Skinner

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Ross & Helen SkinnerDavid & Janet SladeWilliam & Judith SlaterWilliam R. SlaterEarl & Bonita SlimmonJoan SmithL. Eveleigh SmithLinda SmithDouglas & Virginia SnowSandra SorsdahlSouthern Alberta ChapterSouthern Vancouver Island ChapterKevin & Patricia SowersGwenneth SquiresMark & Kim StainsbyBarbara A. StanleyChris & Linda StarrHerman & Joanne SteffensHeath SterlingJim & Mary SterlingNorma StevensJohn R. & Jean M. StewartPatrick Stillwell & Lenore StillwellCatharina J. Stoop-SneekTerry & Ruth StortzLeonard SussmanPeter SutherlandJeannette SuzukiJoan SwanCharles & Kathleen SwansonRaymond & Rosilyn SwitzerSam and Caroline SychAndrew TalbotAntonietta TavernitiWayne D. Carter & Amber TaylorBruce & Elaine TaylorTELUS CorporationKevin TessnerSusan ThackDavid L. ThomasDavid & Lori ThomasDonald & Helen ThomsonMary TierneyPeter & Jacqueline TiessenRobert & Grace ToewsJohn TomiukTradewinds Realty Inc.Arthur & Mary TreloarMichael & Susan TremblayWilliam & Janet Trim

Carl & Nancy TrolleyJ. Stephen TweedleEthel UrquhartAlgis J. VaisnorasRafe McNabb & Virginia Van AllenRhea Van BredaMr.& Antonie & Kathleen VandenbrinkGarry VannFerris VanSickleGerald & Gerda VennemaGeorge & Lynn VooroJohn & Judith WakelinAriel WalkerJean D. WallaceVic G. WallsMareile WalterPatrick & Ann WannamakerThe late Mary E. WattersonFranz & Catherine WeberLinda WeberRoy & Ruth WeberStan & Dorota WeberHarry & Annie WeersinkR. WeichholdMarjorie WelchAndrew & Kathy WellsCase WesselsDavid & Marilyn WestJohn & Lynne WestJim & Cherie WestonDavid & Christine WheelhouseDonna M. WhiteThomas WhiteAl & Beth WickettBob & Tracey WickettMarvin & Maureen WilliamsWilliam & Micaela WilsonBarbara J. WingesJames Wiswell and Ellen FosterRobert & Faith WoodHelen WoodSusan WoodThomas & Clara WoodworthAndrew & Tory WrightJohn Sankey & Susan E. WrightJ. Arthur WynnKevin & Anne YagiSheila A. Yetman

Raymond & Doris YoungDouglas & Marg YoungAnonymous (8)

Summit Society MembersThank you to the following donors who participate in our Summit Society and have included the Huntington Society of Canada in their estate planning.Rex BallardEllen & Vern BarrettJean BeakhouseWilliam & Corinne BeesTerry BerngardsKathleen BissettJohn & Helen BodnarchukLarry & Louise CampbellIngeborg DoddsShirley EybelJohn & Sally GuggenheimerColleen HuntleyStephen HurstCathy JohnsonJanet MainElizabeth McArthurGunnar & Britt MollerstedtNorma NevisonNorma StevensTerry J. Taylor-ToppMichael & Susan TremblayJames Wiswell & Ellen FosterLouis & Patricia Zonta

We RememberFor those we have lost this year, we remember. Gifts made to the Huntington Society of Canada were made in honour of the following people.Anonymous (2) Nicholas AlousisDorothy B. AntoniukGino AnzovinoBernice ArsenaultCarolyn BairdIna J. BamseyMary BanksRaymond Barrett

Brian BarryGreer BatesLillie M. BealGary BellJen BellMary G. BellSharon A. BellPaul BjorndalHortencia BotelhoIvy M. BraunGerald BrownleeDonna BrunschKen BruxerNiki BuchanAnne O. BudnarkEva BullisRuby BurnsTheodore J. CarneyClay CarrollRichard CarruthersJohn D. ChalmersRod ChalmersJames D. ChaplinLeonard ClanceyMichael ClarksonEthel ClaytonLoretta CokranNicole CornishAlbert CovelliBarbara CowlingAndrew CraikEdie CrawfordGlenn CulpMona CushThomas DaikkoffHelen M. DarbeyHarry J. DavidRocky De RoseRose Des RochesLamberto Di ChristofaroMayme DoakAgnes DoranRoderick DormanAdalaide DyetMitch FergusonChristopher FickeCatherine E. FitzgeraldJean Frame

18%increase of followers on Twitter

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Valerie FraserAllen FummertonMay GagneGary GarveyKaren GeddesJohn GeradaMargaret GilmourGary P. GoodmanDoris GrahamMargaret E. GrayHeather Gray PriceMervyn R. GreenJustin GuptaMargaret HaatvedtLeonard HackewichRoger HammondMarlene HannaBruce HansonIrene HarlowRachel Hartery-HansonDylan HaydenBetty M. HayesVelma HeathRay HefferlandDorcas HeffernHans M. HeickMark HennesseyJohn A. HicksDouglas G. Hickson

Richard A. HicksonAlberta J. HipsonSidney HodgkinsonRoy HolmesW. B. HoneyGarnet HornickDenise HuppertHazel HyattTom IrwinFrank Johnson-BeckettKen KasperBill KellyCaroline KernaghanCatherine KiddRaymond J. KingBev KleinJohn KlusLaplamTheresa MarinelliGladys MayMargaret McAllisterCatherine McBurneyPeter K. McDougallSherry McDougallKaren L. McKeemanOlive McKinleyDonna McLeodNancy P. McNuttSadie Meadus

Helen I. MeagherDilys MephamCindy MinardKathleen A. MoonGladys MooreMichael MooreDee MoorehouseGladys MooresPadraig MoranElizabeth MulvilleJohn NeillGreta NixonDonald NorwoodDaniel O’ConnellGleason OakeEvelyn OpsethPaul PaoneRosanna ParryLee-Anne PetersLouise PickeringLise PilonJohn PinsonneaultCynthia Plate-SadlerLyle PlumleyJune PriceConstance B. PullarMichelle PylatiukCurmet H. QuigleyRichard RaddatzArlene ReaumeMargaret RevellTheora ReynoldsJohn RowanJoyce RoweinVera M. SaliskoMarian SchalinLes SchmidtTheodore SchottsDavid SchroederMichael SchroederMary E. SharplesDaniel ShayMary ShentonJohn ShineDorothy SmithRichard SnyderJoyce StanleyRoy SteedClara StoneMary Lou SutherlandHayley SuttonChristopher TapperFrank TaylorWilma Taylor

Brian TeskeMarion ThomsonDell Thornton-NeilKenneth TrebilcockDonald TryttenMartha Van LeeuwenBrenda Van NormanEdith VavasourBeth VoelkerTerriann K. WallBill WattChrista WattJim WattMary WattersonMabel WestmayDavid WestraDoreka WilkinsEarl WilliamsJudy R. WilliamsFrank WordenBrian WrigglesworthCynthia Wynnyk

Estate GiftsTo those who have remembered HSC during their lifetime, thank you. You will always be remembered. Estate Git of Jacob H. AdrianEstate Gift of David GecziEstate Gift of Anneliese KeudelEstate Gift of Elizabeth V. NifortEstate Gift of Ivy Robbins OakleyEstate Gift of Johann F. Penner

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Treasurer’s Report

The year ended June 30, 2016 has been another positive year at the Huntington Society of Canada with new funding opportunities that support our on-going mission “to support individuals and families living with Huntington disease and to fund medical research to delay or stop the progression of the disease.”

The total assets held by the Society grew to $4.8 million from $3.5 million in the prior year, with the net assets ending both years at a similar position of $3.4 million. For the second year in a row, the Society’s revenue exceeded $4.2 million with increased donation and grant revenue supported by unfaltering chapter and volunteer fundraising.

This financial momentum has allowed the Society to make additional investment in both family services and research with an almost 20% increase in the latter. While we remain committed to operating the Society in a cost-effective manner, the focus for the Society continues to be expanding and improving services to people whose lives are affected by Huntington disease, through staffing family services in innovative and diverse manners, continuing to raise awareness and advocating for the needs of the community, and supporting clinicians and researchers in the on-going quest to develop and move treatments forward.

Additional momentum is already in place for next year as deferred revenue at June 30, 2016 includes over $1.3 million received by the Society late in the fiscal year that will be recorded in revenue in the coming fiscal years in accordance with the terms of the restricted donations. This amount includes funding for the establishment of a joint partnership with Brain Canada to support a new research initiative announced in the fall of 2015, expediting discovery research to the HD community. Implementation of this joint partnership is already well underway.

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The surplus for fiscal 2016 was $56,000, compared with $365,000 in the prior year. The 2016 surplus was impacted by an unrealized loss of $75,000 on the fair value of the investments held by the Society both as a result of shares donated and an investment policy aimed at earning a reasonable return on endowment funds and other excess capital that accumulates from time to time, particularly in preparation for funding research competitions. The fair value of the investments at June 30, 2016 was negatively impacted by the Brexit vote in late June. We have seen a recovery in the fair value subsequent to year end and do not anticipate any significant impact on operations as a result. The Society has an external professional investment advisor and an Investment Committee of the Board which meets quarterly to provide oversight of the investment policy of the Society.

To everyone who has contributed to the Society this year – through their time, effort and funding – thank you! The organization is well-positioned to continue to work on the many challenges that face our community.

Glenda Rowein, CPA, CATreasurer

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Statement of Financial Position Year ended June 30, 2016. Assets Current assets Cash $1,367,435 $916,854 Investments 3,201,922 2,229,649 Accounts receivable 173,835 290,076 Prepaid expenses 71,054 44,063 4,814,246 3,480,642 Capital assets 35,771 50,117 $4,850,017 $3,530,759 Liabilities and Fund Balances Liabilities Accounts payable and accrued liabilities $76,301 $60,226 Deferred revenue 1,329,435 82,617 1,405,736 142,843 Net assets General fund 661,978 664,162 Capital assets fund 35,771 50,117 Endowment fund 1,884,494 1,914,534 Laura's Hope fund 17,316 12,273 Ralph Walker Research fund 844,722 746,830 3,444,281 3,387,916 $4,850,017 $3,530,759

2016 2015

Revenue

Expenses

Revenue

Donations 50%Chapter and volunteer fundraising revenue 37%Grants 12%Investment and interest 3%Other income 1%Realized loss on sale of investments -1%Unrealized loss on investments -2%

Family Services 31%Research 28%Administration 10%Development 9%Chapter and volunteer fundraising expenses 9%Public awareness and education 8%Chapter and volunteer support 4%Amortization 1%

16%increase inamaryllis sellers

37

General Fund

CapitalAssetsFund

EndowmentFund

Laura’s HopeFund

Ralph WalkerResearchFund

Total 2016

Total 2015

Statement of Operations Year ended June 30, 2016.

RevenueDonationsGrantsChapter and volunteer fundraising revenue Investment and interest income Realized gain (loss) on sale of investmentsUnrealized gain (loss) on investmentsOther income

ExpensesResearchFamily servicesPublic awareness and educationChapter and volunteer supportDevelopmentChapter and volunteer fundraising expenses AdministrationAmortization

Excess (deficiency) ofrevenue over expenses

$1,577,307 149,340

1,557,860 130,796 (20,492)

(24,607)15,943 3,386,147

388,825 1,309,237 333,544 159,512 397,032 361,776 432,148 - 3,382,074

$- -

- -

-

- - -

- - - - -

- - 20,603 20,603

$15,580 -

400 -

-

(46,020) - (30,040)

- - - - - - - - -

$5,000 -43

-

- -5,043

- - - - - - - -

$536,546 336,127

15,054 9,848

(81)

(4,602) - 892,892

795,000 - - - -

- - - 795,000

$2,134,433 485,467

1,573,314 140,687

(20,573)

(75,229)15,943 4,254,042

1,183,825 1,309,237 333,544 159,512 397,032

361,776 432,148 20,603 4,197,677

$1,976,789 423,156

1,605,278 138,866

29,417

38,151 52,059 4,263,716

995,651 1,227,917 380,995 166,375 382,183

280,625 445,705 18,750 3,898,201

$4,073 $(20,603) $(30,040) $5,043 $97,892 $56,365 $365,515

87%increase inwebsite pageviews

A complete copy of the Society’s audited financial statements is available at www.huntingtonsociety.ca.

38

Eli & the Straw Man weren’t travelling in luxury when they hit the road earlier this year for their “Let’s Boogie Tour for HD.” Guitars, drum kit and six band members filled a crowded van, which sported a plastic-covered window for half their journey after suffering a break-in in Vancouver.

But inside, spirits were high. “It makes it easier to cram into a van for ten hours at a time knowing that you’re promoting not only your music, but something that may help people,” says front man, Eli Maiuri.

The indie roots rock band kicked off their five-province, month-long adventure in April in partnership with HSC. From the Dakota Tavern in Toronto to Moose Jaw’s Common Cafe to The Roxy Cabaret in Vancouver, the band raised the roof while raising awareness about an issue close to their hearts.

Music To Our Ears

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“Even though we’ve never been to these places, we weren’t playing to strangers. It was awesome.”

Tam Maiuri

Trumpeter, percussionist, and singer Tam Maiuri knows all about HD. It killed her grandfather, and now her mother is showing symptoms. When the at-risk musician isn’t on stage, she’s hard at work as a researcher in Dr. Ray Truant’s HD lab at McMaster University. “We are finally coming to a time in HD research when we have got drugs going into the clinic,” she says. “My greatest hope is that my lab or any lab will find a treatment soon for HD.”

Throughout the tour, folks from HSC Chapters showed up in full force, making the shows even more special. Our heartfelt thanks go out to Eli & The Straw Man.

These awareness-raising rock stars are hitting all the right notes.

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151 Frederick St, Suite 400 Fax: 519.749.8965Kitchener, ON Canada N2H 2M2 info@huntingtonsociety.caPhone: 519.749.7063 www.huntingtonsociety.caToll Free: 800.998.7398 Charitable Registration Number 11896 5516 RR0001