Annual General Report

TWO THOUSAND AND FOURTEEN annual general report

1 FROM THE BOARD CHAIR

Dear CDSS Family,

On behalf of the Canadian Down Syndrome Society Board and staff, it is my honour to share with you the results of our 2014 efforts and activities. CDSS continues to be an organization that represents the Down syndrome community across Canada. We are proud to be its voice.

This is my first year as the Chair, but my seventh on the Board. I can tell you that the passion and pride that exists on the Board and within the staff has never been higher. We are excited about the opportunities that exist for CDSS over the next couple of years. A significant priority for us is on building connections and ensuring our collective voice is heard. 2014 marked the beginning of important initiatives and activities to make this happen.

In 2014, we launched two fantastic initiatives aimed at supporting local organizations and self- advocates. CDSS launched the Go21 fund development platform. Go21 provides support to local groups for fundraising initiatives in their own community. Through the Go21 scaled profit-sharing model, more funds raised are kept in the community. We also launched the Mind & Body: Answers To Your Questions book for self-advocates. The book explores questions about relationships, sexual health, safety, and growing up. It is written for people with Down syndrome and other developmental disabilities. The book was developed in consultation with various organizations and groups in the fields of sexual health and disabilities.

2 Connecting to others remains important to the Canadian Down Syndrome Society. Our ability to connect with various organizations continues to grow and flourish. Our Affiliate Council (see page 15) continues to represent nationally. These organizations have presented their community’s needs and issues, which has allowed CDSS to better understand how we can support them.

Lastly, there is no better voice than VATTA (Voices At The Table for Advocacy), comprised of adults with Down syndrome, to represent the impact of the work of CDSS. VATTA acts as a moral compass for the Board and shares their voice across Canada (and the globe!). They prove to everyone the real potential that exists for people with Down syndrome. 2015 represents VATTA’s tenth year and the impact that they have made has been truly inspiring.

In 2015 and beyond, we look forward to continuing these initiatives and beginning many more. Our hope is to provide a stronger connection between CDSS and local organizations. Our goal is to meet the needs of the community. We want to give them the tools, advice, and support when and where they are needed.

Kevan McBeth Board Chair

3 FROM THE EXECUTIVE DIRECTOR

2014 – STRENGTH IN NUMBERS

It is with privilege that we present to you the 2014 Canadian Down Syndrome Society Annual General Report. In developing my commentary, I thought of all the objectives CDSS met throughout the year and relationships we established with people from across Canada. Then it hit me: our success relies on people. People just like you! Strength in numbers is the theme that best characterizes 2014.

When I started working on this Annual General Report, I asked myself “What should I focus on? What do I want to talk about? What are we most proud of?” The answer came quickly. I wanted to focus on how we have helped the 45,000 Canadians with Down syndrome and how CDSS has answered the needs of the membership and communities across Canada. You will see described in this report all our tremendous successes in 2014. Without you, none of these accomplishments would have happened.

2014 was another great year of growth and stability. People from across Canada are taking advantage of an ever-evolving number of services and support from CDSS. With the help of our Affiliates and local member groups, we were able to hear your voice and understand and anticipate future changes. In 2014, that meant not only encouraging innovation, but also be in continuous contact with our membership to broaden our understanding of your communities. We’ve talked with healthcare professionals and care providers. We’ve talked to educators, policymakers,

4 business leaders, community organizers, moms, dads, and self-advocates. Perhaps even more importantly, in 2014 we have listened.

We are delighted to continue with the excellent foundations you have given CDSS. This has given us an opportunity to achieve growth in an ever- changing landscape. We have been able to continue to implement our strategic targets. We have steadily expanded our position as the number one Down syndrome organization in Canada and are seen as global leaders. The skills and determination of our people and the quality of our assets give us a great advantage as we move into 2015 and beyond.

The dedication of our Board of Directors, VATTA, and the outstanding staff at CDSS allows us to deliver services and benefits both to members and to the greater community. I am very thankful to them for their efforts, which allow us to fulfill our Mission and Vision.

So what’s the next step? I can assure you that we will move forward in providing support through all life stages. I can tell you that people with Down syndrome will be valued, fully participating citizens. And I can tell you, with confidence, thatyou are our most important asset. There is indeed, strength in numbers.

Sincerely,

Kirk Crowther Executive Director

5 “Thanks KPMG for supporting VATTA. We could not do it without you!” –Matthew

FROM THE VATTA CHAIR

Hey everyone!

Matthew here from VATTA. There were some amazing things that happened in 2014 for VATTA! Here are some of the highlights:

In January, we had to vote for the newest Vice-Chair and Chair. I was voted Chair and Mary Frances Vice-Chair. We definitely need to say thank you to Ruth and Janet for being the past Vice-Chair and Chair; they did a great job and they are a great inspiration to the group. Thank you!

Every year we celebrate World Down Syndrome Day on March 21. VATTA members do different things to celebrate, like go to events with their local Down syndrome group, make presentations, or wear their Lots of Socks. We also send pictures to the CDSS office to be in their See the Ability slideshow. Each year we blog about it! You can see that blog at www.cdss.ca/vatta.

We welcomed our newest member who joined us in the fall. Her name is Alana Gersky and she is from Edmonton, Alberta. She has been great to have on the committee!

During the conference in Fredericton, we did a presentation about prenatal testing called What Prenatal Testing Means To Me. We did a lot of homework to prepare for this. We were so lucky to have CDSS make it into a video that can be found on the Canadian Down Syndrome Society YouTube

6 channel (www.youtube.com/user/cdndownsyndrome). I am so happy to share our feelings about parents getting fair and balanced information about Down syndrome.

Every year we meet in January and September in Toronto. Last January, we worked hard on our strategic plan, which includes a Mission, Vision, and Values. You can find some of this information on our blog. VATTA also has two committees now; the Lifestyles Committee and the Employment Committee.

The Employment Committee is working on blog posts for self-advocates about working. We posted four of these on our blog already. They are about being flexible and being professional at work, making your passion into a paycheque, and starting your own business.

The Lifestyles Committee helped CDSS in the creation of their new book, Mind and Body: Answers to Your Questions. This book is about bodies, relationships, growing up, sexuality, and safety. The committee gave CDSS feedback and helped with editing it for people with Down syndrome. They also wrote a blog about being a self-advocate.

For National Down Syndrome Awareness Week, VATTA members did many different activities around their communities to spread the word about Down syndrome. Some members did presentations, some were on media to spread the word, and some wrote articles.

In 2015 we have to say goodbye to four original members of VATTA. Janet, Ruth, Mary Frances, and Andreas will be celebrating their ten-year term at the conference. We will help them celebrate during the Endnote Session of the Canadian Down Syndrome Conference. We are very thankful for all the work these amazing people have done.

Thank you everyone for your support in 2014! We can’t wait to see how much we grow in 2015!

Matthew MacNeil VATTA Chair

7 witter 4000 OVER 15 0 4500, T 2014: Facebook er 3100 GREAT VOLUNTEERS WHO INSPIRE CDSS 2014 2013: Facebook 3500, Twitt 2012: Facebook 2000, Twitter 2100 PEOPLE TO SEE THE ABILITY! AT A GLANCE: Social Media Rise

CDSS Operations: 8 employees THE BILLBOARD 10 VATTA members 11 board members CAMPAIGN $1.5M 12 aﬃliates Seen in 50+ communities Raised by you! coast to coast This billboard is made possible thanks people with Down to PATTISON Outdoor Ltd. syndrome in Canada THANK YOU! 45,000

2000 inquires from new parents, teachers, doctors, self-advocates and more! MEMBERSHIP MAP # of 33% Ontario 28% Alberta RESOURCES 13% Manitoba DISTRIBUTED: MAY 16 –18: 14 CONFERENCE ATTENDEES: 9% British Columbia Canadian Down Syndrome Conference 4% Nova Scotia 2000 20 JUL 28: 4% Newfoundland Magazines in Released VATTA’s What Prenatal Te sting Families 3.5% Saskatchewan Means To Me video 3% New Brunswick 15 00

TES New Parent Packages OCT 14: Self-Advocates 1.5% Quebec Unveiled the new See The Ability Billboard 0.6% Prince Edward Island Professionals 0.3% North West Territories 15 00 NOV 7: 0.1% Nunavut Calendars Released online New Parent Package Other BLE DA CDSS is based in Calgary, Alberta. NOV 13: 500 TA Released Mind & Body: Answers To Your Questions Educator Packages

NO 350 The 27th Mind and Body Canadian Down Syndrome Conference in Fredericton was made possible by: GO21 and other events raised: 20 SPONSORS | 35 SPEAKERS | 350 ATTENDEES $38, 449.00 (in 10 communities) 50 VOLUNTEERS | 350 STAFF HOURS 7 LOCAL ORGANIZING COMMITTEE MEMBERS 8 9 2014 HIGHLIGHTS VATTA released a video entitled What Prenatal Testing Means to Me. VATTA’s message is simple: It is important to have fair and balanced information about Down syndrome. If people take the time to know and learn about people with Down syndrome, they will be able to make a better choice for themselves and their families. VATTA wants everyone to “See the Ability” and not to hold misconceptions or fears about Down syndrome. The video currently has over 3,000 views on YouTube.

We launched Go21 in two great cities - Grande Prairie, Alberta and Ottawa. These events were attended by hundreds of people who were all committed to sharing our message in their community: “See the Ability!” If you’re interested in having a Go21 event in your city, contact [email protected]

We announced more exceptional Heroes for the 2014 World Down Syndrome Day. CDSS recognized five people with Down syndrome, who you can read more about at www.cdss.ca/heroes. Each Hero received a $500 grant for their efforts. These people represent the next generation of leaders in our community. They were: • DANIEL VU from Edmonton • MARIE WEBB from Halifax • NATHAN PURDY from Brampton • PIP MCCALLAN from Kingston • WII’UM MORIN from Sudbury

Mind & Body: Answers To Your Questions was another great success. The book explores questions about the body, relationships, sexual health, safety, and growing up that people with Down syndrome and other developmental disabilities may have. It was developed in consultation with various organizations and groups in the fields of sexual health and disabilities. This book was developed by CDSS with a funding contribution from the Government of Canada’s Disability Component of the Social Development Partnerships Program (SDPP-D). We distributed copies all over the country and the world and it can be ordered at www.cdss.ca

In May we co-hosted the 27th Canadian Down Syndrome Conference in Fredericton with the Fredericton and Area Down Syndrome Society. The conference’s theme was “Discover Hidden Potential.” 350 enthusiastic attendees joined us, along with Keynote speaker Danny Soucy, Pre-Keynote speaker Will Brewer, and Endnote speaker Donna Thomson.

Janet Charchuk, VATTA member, spoke at the Fredericton medical pre-conference. Held at the Dr. Everett Chalmers Hospital, Janet spoke to medical students, doctors, and other medical professionals about delivering a determination of Down syndrome and the abilities of people with Down syndrome. Janet was also awarded a World Down Syndrome Day Award from Down Syndrome International. Down Syndrome International announces annual awards to coincide with World Down Syndrome Day on March 21, to recognize those people whose voluntary, professional or scientific activities have strengthened or enriched the lives of people with Down syndrome or contributed to scientific advancement related to Down syndrome.

10 Alana Gersky from Edmonton, Alberta joined VATTA in late 2014. We’re excited for the unique perspective she’ll bring to the team! Read about her at www.cdss.ca/vatta

National Down Syndrome Awareness Week (NDSAW) was another great success. Our campaign, featuring Pip McCallan along with her brother Noal and mother Tara (Happy Soul Project), encouraged people to “Paint Outside the Lines.” We also profiled great families every day throughout the week. You can revisit it at www.cdss.ca/ndsaw During NDSAW we launched the online version of our New Parent Package. This mobile-friendly website can be viewed at www.cdss.ca/parents

We were thrilled to expand our team by two: Carlee Reardon and Jairus Landolt joined the CDSS staff in our Resources and Development departments. We’re glad to have their expertise!

We released the French Educator Package, titled Trousse pédagogique, which is available for order at www.cdss.ca

Kevin Whyte, an amazing Board Chair and friend to the Canadian Down Syndrome Society, served his full term of ten years on the Board of Directors. He was part of the creation of VATTA and many of our other successes. We are honoured to have had him as part of our team but also know we’ll have life-long friends in the entire Whyte family!

11 In 2014, our donations from people MAJOR DONORS like you increased. We are thankful for your continued support! CDSS is proud to & SUPPORTERS continue to grow and serve our community. ADVOCATES

Kevin & Diane Whyte and Family

BENEFACTORS SUPPORTERS GPCP Enterprises Tim Hortons Andrea Tamme Alan Williamson Gwen Littlewood Andrew Kenins Alisa Bergman Heather Whittier Apple Cheeks Cloth Diapers Andrew & Laura Barron Jack Noel ATCO Epic Barry E Emes Jan Smith Charles Nicolle Betty Magee Jean Colborne CIBC Children’s Foundation Border Glass & Aluminum Jean Mclellan Community Living Board Fundy Region Inc Bruce & Ellen Whitehouse Joan Slamen Down Syndrome Association of Kingston Bruce Burnyeat Joanna K Dubois Down Syndrome Association of Sudbury Bruce R Reid John Combs Edmonton Community Foundation Caradawn Transport Ltd John Eyking Sr Erin Ainsley Lough Caroline Gaudet John Field Garnet Banks Charles Palmer John W Kirkpatrick Greater Victoria Down Syndrome Society Colleen Iozzi Judy Quigley Hy-Tech Controls, Inc Crossroads Coring Karl Kolada James N Allan Family Foundation Dan G Blonde Ken B Hiebert John W Buchanan David G Wicks Kirk Crowther Manitoba Down Syndrome Society David N Ker Kirsten A Blaine Margaret A Forker Dayus Register & Grille Inc Kirsten Davison Pamela Kitchen Diane Toth Lorna Bell Ping Cheng Donald Hogarth Lynette Gowie Pogo Logistics Doreen Weir Maie Sillaste Scott E Pattinson Dr Andrew Layton Inc Marco Vocisano Taco Bell Advertising Creative Fund DRC Oilfield Construction Ltd Marian Centre Tech To U Ecole White City School Mary Tomlinson The Calgary Foundation Edward Smith Mathieu Boudreau Tom Koch Elise D Calderwood Michael Yuen TRU-CO Structures Inc Evelyn Maclure Mike Hogan Fredericton Association for Moore ‘s Industrial Service Ltd Community Living Olive Shakotko

12 Pacific Western Helicopters Ltd Edward R Cowan Pinto Wood Carpentry Ltd Paul & Brenda Bandiera Elaine Granger Rex Nielsen Peter & Jill Leonard Elizabeth Macisaac Richard Batten Raymond R Daepp Family & Child Education, Robert Scheck Reid W McBride & Ms Julie M Lauzon Black Harbour NB Roger M Clarkson RGH HVAC & Controls Ltd Frances L Heppolette Ruby Brant Rick Janz G McCormick Sally J Grout Roger Brown Geopacific Consultants Ltd Sean Wiltshire Sheila Shaw George & Jean Creagh Sharon Mohammed Shelley Leblanc Graeme Bieman Sheldon & Jennifer Wiebe St. Michaels University School Greg Thompson Sonya Billiard Stantec Consulting Ltd Helen Cabay Stephen Sardo Vincent Stephanie Meadows Helenanne Carey Steve & Patricia Penticost Sundown Optimist Club Helma Binnendyk Susie Hollywood Suzanne Graham Henri Richard Suzanne Schuit Terri Super Irene Grant T Klingsh Trans Canada Truck Parts Ltd Jackie Charchuk Ted Shier Auto & Truck Service Inc United Commercial Travelers James H Laycraft Thea Wilcox William Weir Jane Aarsen Thomas Gsell Willie Dewit Jennifer Koh Timothy W Free Wipro Solutions Canada Ltd Jim Heaton Triland Environmental Withers LP Joan Kolbauer Veronica Prokop Workers’ Compensation Board Joanne Osenenko Virginia Graham Anonymous Jody Chaba Western Instruments Inc John Holzapfel White Cross Denture Clinic FRIENDS John Parratt William Tillmann Joseph Koenig Aeneas Mcdonell Karen Baker Alyson Chesson ESTATE GIFTS Kari Cunningham Angela Nunes Carl Cook Kate Beever Annick Lafleche Kate Loucks Benjamin Graham Katrin Oberhagemann Beth Mclean Wiest Kent Heistad Brian W Langan Lola’s Pub & Grub Burton Lammie Lori Dicks Carol Ventnor Lori Egan Caroline Pearce Lorna Klohn Carolyn MacPherson Louise Riley & Family Cecil Galloway Lynne A Dorward Chris D Herrmann M Helen Bechard CN Employees & Pensioners’ Community Fund Marcos Pharmacy Colette Barber Martin H McCall Daphne Russo Mavis Breckenridge David Fischl Michael Manley-Casimir David Pugliese Mike Barber Denise Lanoie Muriel Rogers Dennis Scheifele Norman Morrow THANK Derek Hopkins Olutoyin Okelana Dianne Pothier Penelope Sullivan YOU! Peter C Sant

13 FINANCIAL CHARTS Here is a snapshot of the Canadian Down Syndrome Society’s nancial position.

Note: Financial reports were unaudited at the time of printing. They will be available online at www.cdss.ca by Summer 2015.

CDSS’s 2013 & 2014 Financial Statements are available online at www.cdss.ca, on the Canada Revenue Agency website (www.cra-arc.gc.ca), and by request at 1-800-833-5608.

WHERE THE MONEY CAME FROM IN 2014:

82% Donations

6% Conference Revenue

5% Special Events

4% Government Grants

3% Membership & Product Sales

WHERE THE MONEY WENT IN 2014:

Promote awareness in areas of rights, health, 40% social participation, education, and employment

Enable people with Down syndrome and their 27% families to advocate on their own behalf

Change perception about the skills, abilities, 27% dreams, and goals of people with Down syndrome

6% Canadian Down Syndrome Conference

14 THE AFFILIATE COUNCIL The Canadian Down Syndrome Society partners with twelve Affiliate Council members representing organizations from across Canada. CDSS benefits from the input and feedback of our Affiliate Council and values members as partners working with, and on behalf of, citizens with Down syndrome and their families. For information on how to join the Canadian Down Syndrome Society Affiliate Council and be part of the 2016 meeting in Montreal, contact the CDSS office at 1-800-883-5608 or email us at [email protected]

REGROUPEMENT POUR LA DOWN SYNDROME ASSOCIATION: DOWN SYNDROME TRISOMIE 21 NATIONAL CAPITAL REGION ASSOCIATION OF TORONTO www.trisomie.qc.ca www.dsancr.com www.dsat.ca

HALTON DOWN SYNDROME DOWN SYNDROME ASSOCIATION WATERLOO REGIONAL DOWN ASSOCIATION OF HAMILTON SYNDROME SOCIETY www.haltondownsyndrome.com www.dsahamilton.wordpress.com www.wrdss.ca

MANITOBA DOWN SASKATCHEWAN DOWN EDMONTON DOWN SYNDROME SOCIETY SYNDROME SOCIETY SYNDROME SOCIETY www.manitobadownsyndromesociety.com www.skdownsyndrome.ca www.edss.ca

Calgary Down Syndrome Association

UPS & DOWNS: CALGARY DOWN LOWER MAINLAND DOWN GREATER VICTORIA DOWN SYNDROME ASSOCIATION SYNDROME SOCIETY SYNDROME SOCIETY www.upsdowns.org www.lmdss.com www.gvdss.org

15 Suite 103 – 2003 14 Street NW Calgary, Alberta T2M 3N4 1-800-883-5608 [email protected] JOIN US: www.cdss.ca Canadian Down Syndrome Society is a Registered Charitable Organization Canada Customs and Revenue Agency Business Number 118830751RR0001

OUR VISION All people are valued, fully participating citizens. OUR MISSION To empower Canadians with Down syndrome and their families. We raise awareness and provide information on Down syndrome through the prenatal, early childhood, school years, adulthood and retirement stages of life.