Edmonton Community Foundation Grant Approval – I am pleased to share that we have been successful with a new funding proposal with our partners the Edmonton Community Foundation for our EDSS Literacy & Navigation Initiative.  These funds will be used to help support our vital services to our families, members and community.

Through the office of our Director of Community and Family Services, Julie Boucher provides numerous resources and supervises the delivery of our professional services including Speech Therapy, Occupational Therapy, Physiotherapy and Behavior Therapy.  Julie will be supported in her role by Janna Sibal, our new  

Community Services Coordinator starting in July.  Julie also has recently set up office on the north side of Edmonton in the Castle Downs YMCA where she can reach more families in person one day each month.  If you would like to schedule a meeting with Julie, please contact her at julie@edss.ca 

We are busy this week with the onboarding and training for our 10 new Summer Staff who will be leading our summer day camps at the Meadows Recreation Centre and the ACT Centre in Rundle Park this year.  We are excited to have some returning from last year, and 9 new staff who are all very excited to get to know our kiddos.  

	Pictured L-R: Gurwinder, Hannah, Erin, Faryal, Emma, Nanaya, Sean, Ronit

Employment Readiness: 

Nanaya Likhi is a recent Human Resource Management graduate from NAIT with a strong passion for community involvement and supporting others. Drawing on her volunteer experience with the Canadian Mental Health Association and Good Samaritan Society, Nanaya is excited to lead EDSS's Employment Readiness Program and help participants build confidence and workplace skills this summer. 

Summer Staff: 

Marley Belyea is the Summer Program Lead at the ACT Centre and Rundle Park for EDSS's Northside summer programs. A recent graduate of NorQuest College's Disability Studies program, Marley brings experience gained through her practicum as an Educational Assistant in St. Albert, where she supported children and youth with developmental, learning, and behavioural needs in inclusive classroom settings. Passionate about accessibility and community inclusion, Marley has also volunteered with organizations such as the International Children's Festival of the Arts and Canada Service Corps, supporting inclusive community engagement initiatives. Fluent in French and with knowledge of Korean, Spanish, and ASL, Marley is committed to creating engaging and supportive environments where all participants can thrive. 

Gurneet Kaur is the Summer Program Lead at the Meadows Recreation Centre and currently works as a Program Assistant in the EDSS Adult Day Program. A recent graduate of NorQuest College's Disability Studies program, Gurneet is passionate about creating inclusive and supportive environments where individuals can learn, grow, and thrive. 

Emma Fillmore is a Grade 10 student at Dr. Anne Anderson High School with a passion for leadership and community involvement. Through her experiences with the Royal Canadian Sea Cadets, volunteering at a seniors' residence, and working as a babysitter, Emma has developed strong teamwork and communication skills. She is excited to join the EDSS summer team and create meaningful and inclusive experiences for participants this summer. 

Erin Pettapiece recently graduated with Distinction from the University of Alberta with a Bachelor of Science degree. She previously volunteered with the Edmonton Down Syndrome Society through a Community Service Learning placement and brings additional experience as an Early Childhood Educator and Crisis Line Volunteer with Kids Help Phone. 

Chantalle Larson is a returning member of the EDSS summer team and has completed her BSc in Psychology, specializing in child and youth psychology and clinical psychology, at Utrecht University in the Netherlands. She has experience as an Educational Assistant with Edmonton Public Schools and previously worked as a Child Developmental Aide with A-Link Therapy, supporting children with diverse learning, behavioural, and developmental needs.  

Sean Tseng is a first-year Engineering student at the University of Alberta with experience supporting neurodivergent children and youth through his work with Khan Communication Services. In this role, he led activities and provided one-on-one support in inclusive program settings. Sean has also volunteered with the Edmonton Food Bank and in school settings, bringing strong communication, teamwork, and organizational skills to the EDSS summer team. Bilingual in English and Mandarin, Sean looks forward to creating meaningful connections with participants and families. 

Hannah O'Brien recently completed her Bachelor of Arts in Sociology at MacEwan University, with a focus on family, youth, and mental health. She brings experience as an in-home caregiver with Nurse Next Door, supporting children with autism and their families, as well as experience as an on-call substitute teacher and substitute teaching assistant in Whitehorse, Yukon.  

Faryal Nasir is currently pursuing a Bachelor of Arts in Psychology at McGill University. She has experience supporting children with diverse developmental and learning needs through her internship with The Ujala Foundation and has volunteered in a variety of community initiatives focused on youth engagement and inclusion. Faryal is excited to join the EDSS summer team and looks forward to creating meaningful and inclusive experiences for participants this summer. 

Ronit Arora recently graduated from NorQuest College's Disability Studies program. Through both his practicum and volunteer experiences with the Edmonton Down Syndrome Society, Ronit has developed a strong passion for supporting individuals with diverse abilities and fostering inclusive environments. 

Gurwinder Singh is currently studying Disability Studies at NorQuest College and recently completed his first-year practicum with the Edmonton Down Syndrome Society. In addition to his practicum, Gurwinder has volunteered with EDSS, further strengthening his passion for inclusion and community support. He is excited to return this summer and help create fun and meaningful experiences for participants and families. 

Updates

Annual General Meeting

Last week, we gathered with our Board of Directors, founding member Gail Faulkner, voting members, auditor Edwin Radke of Radke Professional Corporation, volunteers, and staff to celebrate and conduct the Edmonton Down Syndrome Society’s 30th Annual General Meeting.

During the meeting, the Board presented the approved Audited Financial Statements for the year ending December 31, 2025, along with the 2025 Annual Report, both of which are available on our website. We were proud to share the organization’s strong financial position, celebrate highlights from the past year, and discuss exciting initiatives planned for 2026.

Treasurer Brad Smith noted during the Financial Report that EDSS is on track toward achieving a $1 million operating budget in 2026 — an incredible milestone in our organization’s 30-year history.

Voting members approved the election of two new Directors to the Board: Iren Parvin and Amirali Kazani. Members also approved third terms for Directors Karen Stone and Brad Smith.

The Board shared sincere appreciation for Jennifer Cassidy, Past Chair and Director, who completed her third term after seven years of dedicated service. Gratitude was also extended to Shawn Sidoruk and Melanie Banasch, who resigned from the Board earlier in 2026.

Iren Parvin joins the Board with extensive experience in human resources, labour relations, governance, and advocacy through her leadership role with Keolis Canada. Her commitment to EDSS is both professional and personal, shaped by her family connection to Down syndrome and her passion for inclusion and human rights.

Amirali Kazani brings more than 17 years of senior financial leadership experience across multiple sectors and currently serves as Executive Director, Finance with Explore Edmonton Corporation. His expertise in financial governance, audit, risk management, and strategic planning will support the organization’s continued growth and long-term sustainability.

Walk for Down Syndrome 2026

Our Walk for Down Syndrome 2026 was an incredible success, welcoming more than 450 attendees and raising an outstanding $91,731.23 in gross revenue.

We extend our sincere thanks to our major sponsors: Daytona Homes, Integra Technologies, RBC, Qualicare Edmonton South, Mortgage Connection, and my Rotary club, the Rotary Club of Edmonton Sunrise. We also thank returning community partners and Board Members Elia Damis of Level III NDT and Trish Mullen of  Mullen Leadership Recruitment for their continued support.

A special thank you goes to the Air Canada Foundation for once again donating our grand prize. Congratulations to Catherine Litwin on winning this year’s grand prize draw!

We are deeply grateful to all prize donors and community supporters, including GC Metal, Wolfe Pack Warriors Foundation, Earth Water, Edmonton Elks, Canadian Brewhouse, Islay Agencies, Royal Alberta Museum, Ice Cream Depot, Canadian Tire Edmonton West, Beyond Face Painting, Edmonton Stingers, Fort Edmonton Foundation, Bailey Oleksyn, City of Edmonton, Massage Heights, and Lindt Chocolate.

Additional thanks go to Ledcor for donating the BBQ and tent, ATCO for providing the sound stage, C3 Caring Cosplay Characters, the Edmonton Elks Cheer Team for energizing the crowd, Edmonton Oiler's Alumni Ben Scrivens attending in support of Team Vinny, and the Edmonton Stingers and their families for joining us on the walk.

Congratulations and thank you to all of our incredible fundraisers, including Patrick Bussieres, Alex Alfaro, Meghan Eaton, Jody Villeneuve, Patrick Twinn, Bryna Sclater, and many others whose efforts made this event such a success and took home some incredible prizes from our partners.

A huge thank you to our volunteer and staff team for all the effort put in to make the walk For Down Syndrome a success. Pictured l-r: Eli Bernard, Jerry Tryhuba, Janet Tryhuba, Meghan Schritt, Janna Sibal, Mike Smart, Gurneet Kaur, Tori Bergquist, Elia Damis, Michelle Hill, Patrick Bussieres, Jackson Bussieres, Julie Boucher.

Upcoming Casino Volunteers Needed

We are thankful to volunteer Casino Chairperson Rick Grebenstein, who will lead our next casino fundraiser on September 22–23 at Grand Villa Casino.

Please watch for the volunteer call in this newsletter and consider signing up to support this important fundraiser. Be sure to mark the dates in your calendar!

Our team was pleased to attend the Edmonton Community Foundation AGM last week. We appreciated connecting with our ECF friends like Vice President of Philanthropy Noel Xavier and CEO Tina Thomas and Olympian Mark Tewksbury as the keynote speaker. We are pleased to gather with like-minded supporters who value the benefits of legacy giving and creation of endowments for future sustainability of organizations and programs like ours. EDSS Endowment Fund at the ECF  If you would like to learn more about this type of planned giving, please contact me for a call or a coffee visit.

This year's National AccessAbility Week theme is "Building a Strong, Accessible Canada." It invites all of us, including governments, businesses, organizations, and individuals, to take action to advance a barrier-free country. Significant progress has been made to eliminate and prevent barriers, and by continuing to work together, we can build a truly accessible, inclusive and equitable Canada.   

National AccessAbility Week: May 31 to June 6, 2026 - Canada.ca 

I had the opportunity to attend the Canadian Congress on Disability Inclusion 2026 to launch the National Accessibility Week. Some of the great takeaways from the panelists include recommending immersion of disability studies in the education system starting in the primary years.  This important action would begin to make changes for every person in their formative years and help our children grow and develop with a different appreciation and understanding of disability and accessibility similar to learning a second language. 

I also appreciated the concept of “Inclusion by design, but not inclusion after the fact”.  This message was meant to encourage employers to impact future strategies for employment and growth with an economic impact on their business.  Accessibility should not be compliance, but it is a strategy and a way to build resilience in the community, and a way to embrace people with diverse disabilities for their talents and as a valuable resource. 

Last week I had the pleasure to meet Rick Hansen at my Rotary District Conference in Whitehorse Yukon.  Rick’s keynote speech brought out an important message of resiliency and to “never give up”.  I was inspired by his dedication to a vision of inclusion and accessibility for the future, and we all have a role to play to support this vision.  What is your role? 

This week I had the pleasure of receiving our donation from the Rotary Club of Edmonton Sunrise.  With this donation, every participant in our summer camp will benefit as this $5,000 gift will help us reduce fees by $50 this year.  Read more about our 2 new locations both north and south, our amazing themes and field trip plans for summer camp further in the newsletter.

 We are excited to share that we have secured new spaces for the full summer of Day Camp on both the north side and south side of Edmonton in partnership with the City of Edmonton.  We will be offering full summer 8 weeks of summer Day Camp at the ACT centre on the North side, and the Meadows Recreation Centre on the south side.  We will be fully staffed at both locations and registration is now open. We are thankful to the Rotary Club of Edmonton Sunrise who made a generous donation of $5,000 which will allow us to reduce the cost of day camp by $50 per person per week.  This program will be eligible for FSCD billing if you have a contract as previous years.  Register using the contact@edss.ca email as soon as possible to secure your space for camp.  

Further to our member engagement session, I want to share some of the additional highlights we shared with our members during that event. 

Advocacy Strategy Updates 

When we asked, you shared these urgent priorities: 

Health care and service navigation   

Challenges accessing consistent, coordinated health care.   

• Long wait times for assessments or specialist appointments  

• Difficulty finding adult health care providers with Down syndrome expertise  

• Support navigating medical systems  

• Aging-related health needs  

Our focus is to connect with our government and share the work we are doing and what we need their help with to further the voices and needs of our families and their children. 

We will be encouraging support to provide better access to primary care for adults who do not have a dedicated medical clinic in the Edmonton region.  We will share the research and advancements being made with our partners Global Down Syndrome Foundation and their second version of the medical guidelines for adults with Down syndrome: GLOBAL Medical Care Guidelines for Adults with Down Syndrome | Global Down Syndrome Foundation 

Did you know?

Through the Eye See…Eye Learn program, children in kindergarten are eligible to receive free glasses and frames. Be sure to ask your optometrist about it!