From Playgroups to Policy: How Edmonton Down Syndrome Society Builds Belonging

We share how a grassroots playgroup became a 30-year hub for connection, education, and advocacy at the Edmonton Down Syndrome Society. From closing the adult medical care gap to launching employment readiness, we show practical ways families and allies can help.

• EDSS origin story and governance renewal
• Parent-to-parent connections through play-based programs
• Adult day program and employment readiness plans
• Pediatric strengths and the adult GP care gap
• How to use family and practitioner medical guidelines
• School transition supports and inclusion training
• Collaboration with Canadian Down Syndrome Society & Prep Society
• Wonder Years workshop for newborn families

Ready to help? Volunteer, attend an event, share the medical guidelines with your GP, or wear mismatched socks on World Down Syndrome Day 2026 to spark a real conversation.

About Our Guest
Janet Tryhuba is the Executive Director of the Edmonton Down Syndrome Society. Janet is an accomplished executive with both Fund Development and Communications professional with over 30 years of experience in the charitable sector. She is a strategic leader who is recognized for her creativity, strong work ethic and passion about connecting people to their causes by building successful relationships. 

What is Give Amplify Connect?

There’s a story behind every action. Give Amplify Connect is a podcast from the Wolfe Pack Warriors Foundation that gives a voice to the Alberta-based charitable organizations creating community impact, changing lives, and making a difference. Driven by honest conversations with host Kristy Wolfe, it’s a chance for passionate changemakers to share their story.

Learn more at wolfepackwarriors.com

Podcast music used with artist permission
"Okay" by Ellen Braun

Transcript

Welcome And EDSS Origins

Janet Tryhuba 0:00

Wonder Years for us is a very, very important cornerstone program to initiate their journey with their family with us. So we're very excited to make that happen again this April.

Announcer 0:15

Welcome to Give Amplify Connect, the Wolfe Pack Warriors Foundation podcast that dives deeper into the stories of the charitable organizations in Alberta that are making a difference. Host and producer Kristy Wolfe sits down with the leaders of the nonprofit world to learn more about their purpose, hopes, and dreams. Settle in for an honest conversation with Kristy about the impact people are making in their communities and how they keep moving forward.

Kristy Wolfe 0:43

Friends, with me today is Janet Tryhuba, the Executive Director of the Edmonton Down Syndrome Society. Janet, will you start by introducing us to the Edmonton Down Syndrome Society, please? Well, thank you, Kristy. Yes, of course.

Janet’s Path To EDSS Leadership

Janet Tryhuba 0:57

I'm very happy to be with you today. I'm thrilled to share what I can about the Edmonton Down Syndrome Society. We've just celebrated our 30th anniversary last year. So yay to us. We're very excited. We're a small grassroots organization that started here locally in Edmonton, of course, with just a few families. Families who were blessed with a brand new baby and a young child, and they were introduced to each other. And slowly those families made connections in our community. And from there, they added resources, brought people in to help bring new resources to the community and just really connect with each other. And that was the basis of how we started 30 years ago. And it continued to grow and grow over the years till we eventually needed staff. And so about 20 years ago, then the first staff were hired, and eventually we moved into this office here near Mill Woods. And the organization has just continued to grow and thrive. So I've been with the organization now just uh almost three years and been just loving it. Wonderful people here, fantastic supporters. And we've had a lot of big plans and big goals for the organization. So we're just really starting to make some good traction on uh where we would like to take things next.

Kristy Wolfe 2:10

I love that. I'm excited to hear about some of the programs and what you offer for families, but I also want to hear about why you got involved. So will you tell us that story?

Janet Tryhuba 2:20

Yeah, for sure. Well, for me, my previous work was uh my last role was actually over at Fort Eventon Foundation. That's where we met. And I was just thrilled to be in that organization as their executive director. But it was time for me to make a change and I wrapped up a big campaign that we did there. But I was looking for some opportunities to work more project-based and learn a lot more about other organizations. And so I managed a little bit of project work for a while, but pretty soon I found this organization and they needed a lot of help, and it really aligned with my values and things that I was interested in doing. So I took a change and decided to come back into a full-time executive director work with this organization. And it's turned out to be a fantastic fit for me. I've loved the organization and loved seeing where we can grow and make a difference for these families. Uh, they needed a lot of fundraising support and a lot of governance organization, get the policies and things like that in place. And we've just really helped uh nurture the relationships that uh are part of this community for, like I said, 30 years now. And uh that's part of what I love is uh connecting people, just building those relationships and strengthening a small organization like this. I had a little personal connection with people with Down syndrome, not a large one, but my sister and brother-in-law have cared for people with Down syndrome for many years, uh taking them into their home. They've been family caregivers for different people over the years. And so I had a personal connection all of those years that they've been doing this and uh getting to know a wonderful uh number of people in their lives. And that's really my first introduction to people with Down syndrome. And I knew that there was a lot of support needed and a lot of things that match with my values and my opportunities to give to this community. So definitely a big learning curve for me to work in this sector, but it's been wonderful. I've been really enjoying it and learning so much about our community and the different ways that we can lean in and really help this organization.

Kristy Wolfe 4:20

It sounds like you're a really good fit for this with some personal experience with people with Down syndrome through their lifespan, but also the skills you bring as an executive director. Had they had an executive director prior to you? Because I know that many of these like smaller grassroots organizations are often volunteer-driven. Um, and as they develop, they kind of all of a sudden realize, okay, we do need something beyond communications or beyond accounting. So, how what did that look like for EBSS?

Governance, Strategy, And Sustainability

Playgroups, Bonds, And Community Impact

Janet Tryhuba 4:50

Yeah, they had had previous executive directors for a number of years, but there had been a vacancy right when I was being recruited. And so they really took their time to get their governance policies and their needs uh organized so that they could really understand what they needed. And they they used professional search agency and found me. And I agree it's been a great fit. I've had the right skill set that this organization has needed and has lacked for a number of years. We brought together a number of governance issues, reset a new set of ILAws and governance policies, and then this last year a new strategic plan, um, all while definitely doing a lot of leaning in on the fundraising side and getting it more sustainable and organized with a real look to the future. And that's where I come in as well. You know, organizations that are small definitely need to look at what they need from year to year to operate. But what my future goal is setting up the organization well into its future and establishing stronger endowment funds are a top of my priority as well. So there's there's so much that can be done. And small organizations need good leadership and a good team. So that's my other priority of with some good funders. I've helped bring a strong staff team together. And that's definitely why we're successful today, uh, is because of the team that I've been able to surround myself with. And also a strong board. There's a lot of work that goes into making sure that your board is there as you need them. And it's a vital part of the organization sustainability and growth. So I work very closely with my board, and uh we're very uh strategically oriented to what we need for the future. And it's a great fit. I'm really enjoying it.

Kristy Wolfe 6:38

I want to hear more about your programs and about your fundraisers, but first I want you to talk a little bit about how you've seen EDSS make a difference for individuals with Down syndrome or families with children with Down syndrome.

Pediatric Strengths And Adult Care Gap

Janet Tryhuba 6:52

Yeah, absolutely. Well, Christy, I think one of the best things that I learned about is uh when you visit our center, you'll learn that one of the programs that was really the foundation of how EDSS was formed was basically a playgroup. And we continue to offer that. It's a free space. We have a room dedicated to a playroom environment so that families with small children can come, get to know each other, spend time, let the children play. There's a whole toy room that they get to pull out and select what they want to play with for the day. We've added on some partnerships with the Eventon Public Library. So the program we run now is called Sync Sign, Laugh and Learn. And a teacher that comes out from the EPL leads that initiative. But essentially it's playtime for the toddlers. And what I love about that program for our organization is that is how the people began when they started this organization is playtime and parent time. And let those families connect, build long-lasting relationships. And they have, those are friendships and relationships that have now spanned those 30 years, and they still are with us, of course, many of them. Still today, that's the foundation of what we understand and we see it time and time again, where families created those bonds early on in their child's life. And it's not too late, even as teenagers, when parents bring their children out regularly to programs. Sure, the children are getting great interaction, but the parents sitting in the background connecting with each other is the other byproduct of that program for the child. And they're connecting with lifelong relationships in in store for them, whether they realize it or not. The friendships have created bonds. Sometimes we take for granted, as our children, uh all of us, they are growing up, they go to school and they make friendships. But sometimes children with Down syndrome they lack that connection with another child to really call their friend. And when they've made a connection here, that's a difference. They've built friendships and they look at that time spent in programs or right here in our spaces with another person that is like them and that they can connect with, and they've built long-lasting relationships that we've seen just flourish well into their 30s and 40s now. That really is something that has made a difference in me seeing that. Um, it's one thing, like I said, to support one family at a time, which happens all the time, but watching them come together and seeing that we have an annual holiday party here at Christmas time. And of course, that's a great time for many of them to get together, reminisce and bring their families together and celebrate the holidays. But the chatter in the room is just nonstop. It's just great to see the connections. We also have a walk. Every year at the uh Walk for Down syndrome, our community comes out and supports us, including many of the professionals like our doctors at the Stollery Children's Hospital. We have Dr. Edwin Bolster and Dr. Mel Lewis and their team. They've been wonderful supporters. They come out to a walk with us and show our community their support, not just in their offices, but with us and with our families at the walk. Things like that happen all the time, and we love connecting people. There is so much love in our community, and people want to get connected and be supportive and show that they care. Also, medical is one big priority for us that I wanted to talk to you about today. We we have a big need for children. Obviously, the pediatricians are there for us with that stolery clinic that was created many years ago. But we do lack for support for our adults in our community. Currently, we don't have an adult clinic, or our medical uh professionals are not accepting new patients, and patients with Down syndrome are not on the radar for people to get into a new doctor. So that's something we're working really hard at. There's wonderful guidelines that GPs can follow just to make sure that the adults are getting the regular screenings and tests as they age. But we're finding we need those doctors who are willing to take them on and um and accept them for um their regular practice. And so we're working actively.

Kristy Wolfe 10:59

I want to interrupt you for a second, sorry, around that, because something that we found in our own family is that idea that, yes, in pediatric care, there's very much a clinic. I don't know how long the clinic in Edmonton has been running for Down syndrome, but the transition to adult care is still a work in progress. And that's what I'm hearing you saying. And so, how do people support that work? Is there a way? Like it sounds like that's becoming a priority. You've recently done a strategic plan and making that one of the priorities. But what would you say your average person could help?

How Families And GPs Can Use Guidelines

Janet Tryhuba 11:33

Family member that has a child with Down syndrome, the child that is now an adult, could use the guidelines. We have them ready available. Um, they're on our website. We receive them from the US. Uh, Global Foundation in the US has worked with the medical community to create guidelines and that can be widely shared. There's a parent-friendly version, and then there's the medical practitioners version that they can take to their doctors and say, please use these guidelines as a help. If this helps you, then will you accept my child as part of your practice? So rather than have one clinic, we're encouraging families to use those guidelines with their own GPs. Hopefully they have one and they can establish that going forward. So that's one thing that they can do. And like us, we can advocate to our Alberta Health Services that we really need some support in this area. We really need uh a general practitioner who can take on the specialization of uh Down syndrome. It's very widely accessible in other countries like US, but we're really lacking in that in our country for sure.

Kristy Wolfe 12:40

Oh, interesting. Um, I really appreciate the way you just explained that there are guidelines both for families as well as for practitioners. I think those kinds of supports that can be in place for families are incredible because that's that is the number one advocate, the family members, the caregivers, the patients themselves at times. Um, and how do we teach them to be the advocate in the space? I heard you talking about the guidelines coming from the US, and I'm just wondering what it looks like here in Canada. You are very specifically in Edmonton. We I live in Canmore, Alberta. A lot of our work with the Wolfpack Warriors Foundation is also in Calgary. And I'm just wondering what it looks like in Canada regarding the Down syndrome societies, if there's like an overarching organization.

National Collaboration And Shared Learning

Finding Local Support And Navigation

Janet Tryhuba 13:23

Collaboratively, we work with the Canadian Down Syndrome Society, and they're based in Ontario. Uh, they were incorporated actually out of Calgary in the beginning, and their executive director is based in Ontario now. But she works tirelessly to collaborate with uh leaders like myself and any other uh down-serving community organization across Canada. So we first of all try to find out who is out there working like us. Uh, maybe they are a very small grassroots organization, only with a few volunteers or single volunteer in some cases, or maybe they're a little bit larger structured organization like ourselves. But we meet now monthly and we have a plan that is working towards things that we can collaborate on together, things like advocacy, things like communication strategies. And that's been very helpful. First of all, we get to meet who else is working on these important topics and issues in our own province, like our colleagues in Calgary. I'm working with the PrEP Society and the executive director there who's part of this. So I'm meeting people in BC and people across, you know, working in Montreal or in the eastern provinces. So it is very good. We learn so much from each other. We don't have to reinvent the wheel. That is also very important to me. I came, my previous career was working with the YFCA, which again had that national outlook. We were collaborating all the time. And so I really want to see more of that for Down syndrome and uh working with our colleagues, like I said, I know we can achieve more. You and I were chatting as well about some beneficial conferences, and that's another learning experience, like that we can bring both our medical practitioners, parents together and learn what's happening in these other countries. And sometimes it's things like that. It's those opportunities that would bring people together, that learning and that experience and the collaboration. And even dollars can come for organizations because of that type of work.

Kristy Wolfe 15:17

So Janet's referring to uh two conferences that are happening in Calgary in 2026. First is Children's Healthcare Canada, and the other one is the Kids' Brain Health Network. And so just examples of conferences specifically geared to children and families, but they're happening locally. And if you are somebody who is involved with a grassroots organization that works in children's healthcare, I would highly recommend both of those conferences. I also was wondering uh if somebody's listening to this podcast who has a family member with Down syndrome and they are not connected with an organization like EDSS, where would you tell them to look first? Not Google. We know just Googling Down syndrome isn't our best option. So where which organization would you kind of guide them to to get connected locally?

Day Program And Employment Readiness

Janet Tryhuba 16:02

Well, you know, here in Alberta, uh, if is there anywhere in the province they could reach out to us or the Prep Society in Calgary, they're a good resource as well. We're serving currently people from middle of the province, typically Red Deer, north to Northwest Territories. Our reach could be, we don't turn anyone away from you know providing resources to. It's just a matter of whether they have something that they want to come to for us. Is it practical? They'll typically come from one of those regions. We have gone into communities as well, sending our uh speech therapists or our director of community and family resources to communities that need their support. It depends on what we can do, what we are able to provide, and what they need, of course. So call us, uh, reach out, check our website. But yeah, we're a wealth of information to point people in the right direction. We do a lot of navigation for people, whether the government support, medical, as I mentioned, financial, and then just also mental health support. There's lots of resources to help people, you know, even just resources physically that they can take themselves and read or learn from. And of course, we try to connect people, as I said. And that's a big way of when people are had that opportunity to come in person. That's very powerful. But we also uh have created a lot of online communities too. One in particular this last year, we were working with some families who expressed an interest in meeting other families who have a dual diagnosis. And in our world, that typically will mean they have Down syndrome, but often people with Down syndrome might have autism. And so that comes with a little bit more complexity. And families have expressed interest to get to know other families that are dealing with the same thing. So we've connected a number of those together. They're meeting, first of all, uh in person to have a let's get to know each other. And then they can choose to meet after that, after a few times on their own or virtually.

Kristy Wolfe 17:53

Will you share a bit more about your programs now or your strategic plan, whichever you would like to focus on? But share a bit more about what EDSS is actually working on.

School Transitions And Inclusion Training

Janet Tryhuba 18:01

They're both so important and really one really drives the other. So obviously, our strategic plan is helping us sort through all of those priorities. And as we've done that work, we've realized a lot of things are very important to our families. Like I mentioned, medical needs, but also uh education supports within that area. And so I talked a little bit about medical already, um, what we're doing there. The programs next that we're focusing in on in terms of education are really quite a wide variety. Our biggest program work now is our adult day program. So we service people who are uh 16 years old, right till we got 53-year-olds coming to our day program, a wonderful group of people here Monday to Friday, uh 10 a.m. till 4 p.m. It's it's fantastic. We focus on things that are supporting their individual needs. And it's a wide topic of uh supportive skills that help with their life. They're learning amazing things to be building relationships, stronger connections. Some of them have goals to work in the community and some of them have goals to volunteer and just strengthen their capacity in these areas. So that's also led us to a new up-and-coming program. We're going to be building an employment readiness program, which will launch here later this summer. And we've got a great program director right now that's putting that curriculum together. And with our lead of our day program, they're mapping out what that new initiative will look like. So we're very excited about that. The other supports, as I mentioned, sometimes we go to where people need us. And sometimes that's supporting people with maybe a child. We've learned that a lot of uh support is needed in the transition time. So if you think of a child in elementary school, there's there's a lot of support when the children are young. Who, as that child and the parent now are navigating that next step and they are moving on to junior high, and then eventually later into high school, there's a lot of additional needs for support in the education system. And we find ourselves being called upon for resources to help parents, but then also the schools themselves. And interestingly enough, they're recognizing that it's not just the teachers that need support, it's the whole support staff, right to the custodial staff and the front office staff that need to know, you know, what do people with Down syndrome need and how could we help them? So we have some initiatives for educational awareness to help people in that setting. And really it can help everyone. Even daycares have reached out to us and uh we can provide learning opportunities for their caregivers. That's such an important part of our world and getting ready for a more inclusive and ready accepting community. And that's what I'm really proud of. We're doing a lot of those things in in our space, and that's making me very happy that we're helping the general population be more understanding and accepting and not afraid to interact with people with Down syndrome. That's sometimes the first thing that has to happen is let down your own anxieties and listen and learn and understand because it's not that hard. And if you have questions, it's okay to ask because there's a lot of help out there. We can do so much more if we are ready to learn and ready to offer some support because our community is great. We've seen that so many times when people have something to give. They want to give back. Those are some of the new things. But I also want to touch on something that the Wolfpack Warriors Foundation have been fantastically supporting us within the last two years and this year as well. Christy, we're very thrilled that you've uh shared with us some support for our Wonder Years program. It's a workshop that happens every year and it brings together 20 to 30 people with their newborn baby with Down syndrome, and it's expanded to just those parents coming together. We found grandparents and sometimes even an aunt and uncle have been joining us when that surrounding family for that child wants to come together, meet another family or two. There's typically 10 or 12 families coming every year to this workshop where they're gonna meet with us and meet each other for the first time. Sometimes and be really a great introduction to our community. We hear from our medical professionals, our pediatricians come and speak. They also get to learn about those long-term connections that I spoke of. Last year we had an amazing story. There were four young boys, all in their teen years, and they came with their parent and they talked about how they built that friendship. You could test tell buddies forever. And they're just wonderful kids. And those parents speak of the connections that they made early on in their lives and how it's just built and built. But they have to do the work and get those children to meet. And those parents have to do that work to keep them uh connected throughout their lives as they're growing. So Wonder Years for us is a very, very important cornerstone program to initiate their journey with uh their family with us. So we're very excited to make that happen again this April.

Kristy Wolfe 22:53

We had an experience in the NICU when my son was born. And I would say exactly what you're talking about, finding community that's had a similar experience that can talk openly about the strengths and the challenges and just share those resources. I mean, it's one thing to find a website, it's one thing to talk to a healthcare practitioner, but it's a different thing to talk to a parent who's been through it. And so hearing that story about the four boys being friends still and having that, I love that parents got to see older kids with Down syndrome be there and kind of recognize that it's just a diagnosis. There's still going to be these amazing people. And sometimes people get stuck in that space. And so being able to meet other families and also see their kids who are older, that really makes a big difference. We see it quite often here in our facility.

Wonder Years: Welcoming New Families

Janet Tryhuba 23:44

There might be a young family here visiting for the first time. And then someone from our day program walks out and greets them and introduces themselves and sounds just like you or I. And uh the family member is blown away because they maybe never met somebody else with Down syndrome, and they're holding their own little baby and have all these worries and concerns and uncertainties. They don't know what that potential life could look like. And here they walk into a room of people with amazing potential and amazing opportunities. And it may or may not be like that for their child, but at least they've had an experience and they feel heard and seen and they know that there's community there.

Kristy Wolfe 24:22

Absolutely. Okay, so this podcast is called Give, Amplify, Connect. How can people in the community give, amplify, or connect with the Edmonton Down Syndrome Society?

Janet Tryhuba 24:33

Well, thanks so much, Christy. Number one, making this available. We think, yeah, telling our story is really important. Sometimes we're that little organization that needs to let more people know about us. So they can volunteer. You can visit our website. We have lots of opportunities and get involved with one of our fundraisers. Like I mentioned, there's a wonderful uh walk coming up in June. It's a great time to learn more about us. We also have a great event if you like the fun gala type event. This year it's going to be a country and western theme, kind of taking a little piece out of Calgary, but uh we also do it during the CFR period. So next October, we'll be walking the runway in some cowboy attire. So that'll be a fun change for us. Uh, but it's called Uniquely Meet. And what I love about the event is it's celebrating that uniqueness in our community and letting them shine on stage. Uh last year, Alana Gersky was our fantastic MC, co-host with Josh Clausen of that event. And our runways uh always sprinkled with brand new people every year. So it's a wonderful feel-good event. You you come away with being entertained and uh maybe we loosen up your wall a little bit too. So you can't walk away from that event without cheeks sore from grinning ear to ear from all the smiles and joy that you've been part of. So yeah, we look forward to that. We have a great team of volunteers and fundraising uh supporters to help us create a wonderful year of events. So check it all out. Our website is full of lots of opportunities and or you know, come in, drop in and visit us. We're south side of Edmonton near Millwoods, uh, easy to find, easy to get to, and uh we're always open to meeting new people that want to get involved in some way.

Kristy Wolfe 26:10

Tell us about an organization or a person that maybe you've worked with or maybe you want to work with who inspires you.

Hopeful First Encounters And Potential

Janet Tryhuba 26:17

The person that inspires me around this work is my sister, uh, my sister Barb and uh her and her husband, Gary, as I mentioned, who've dedicated their entire lives really to working with people with Down syndrome. I've noticed in her how much it has made her life just that much more beautiful and the people around her with her own children. I think it's a gift that they give, but they got back in return with making that a part of their lives. And I think that inspires me because I can use my gifts and talents in the way that hopefully is helping this community. And I hope that others see that example and they do a little bit within their own ways and means, right? Each of us have different talents and different abilities, but it's a it's a challenge to put it out there for people to look inside themselves and say, what do you want to strengthen? What do you want to give? And what do you want to learn? And you'll get so much back in return that um you won't even feel like you're giving. You're feeling like you're getting all the time.

Kristy Wolfe 27:16

Thank you so much for joining us and telling us more about Edmonton Down Syndrome Society. I know that March 21st is World Down syndrome day. Yes, you can wear mismatch socks.

Janet Tryhuba 27:26

It represents the chromosomes because socks are kind of shaped like chromosomes, and it's a theme just for people to have fun and raise awareness about Down syndrome. So get out your socks and learn and share with other people why you are supporting World Down Syndrome Day.

Kristy Wolfe 27:39

All right, mismatch socks. I'll have them on on the 21st. Thanks, Janet. Sounds good, Kristy. Thank you for joining us today. The purpose of the Wolfe Pack Warriors Foundation is to give, amplify, and connect. Visit our website, wolfepackwarriors.com to learn more about this initiative or connect with us about a registered charity that is important to you. Don't miss the next episode. Follow Give, Amplify, Connect on your favourite podcast platform to hear from other Alberta-based nonprofits about the work they are doing. On a final note, remember to take care of yourself and your pack.

Give, Amplify, Connect: How To Help

Ellen Braun 28:15

Okay, you're gonna be okay. You're gonna be okay. Hush, my darling. Gonna be okay. You're gonna be okay.