The Voice - Edmonton Epilepsy Association with Valeria P

Join VAD as we learn about the Edmonton Epilepsy Association.  An organizational member of VAD, EEA offers some great community resources and Valeria P, the Executive Director speaks to the programs and services the offer.

Transcript

Teresa Makarewich, VAD Program & Services Manager

Welcome to the voice of Albertans with Disabilities podcast for August 2023. I'm Teresa Makarewich, your host and VADs program and services manager. Thank you for joining us today. In today's podcast, I'll be talking to Valeria Palladino from Edmonton Epilepsy Association. Their vision is empowering people who live with epilepsy. VAD has been talking with our Members to learn about resources that are available to the disability community, and I want to thank Edmonton Epilepsy Association for coming on the podcast to discuss the resources this organization provides. Together, We hold the power. Please welcome Valeria to the show. Can you please introduce yourself?

EEA - Valeria P, Executive Director

Hello, Teresa and thank you for having me on your wonderful podcast. And first of all, on behalf of the Edmonton Epilepsy Association, we all wish to express our sincere condolences for the sudden loss of Margot Brunner, Executive Director of VAD. We're still absolutely in shock. My name is Valeria and I am the executive director And Chief operating officer of the Edmonton Epilepsy Association, as you indicated. I have come to work and serve the EEA in April 2020, so I am a pandemic Executive director. Because I started working as soon as we had to close our doors in our office. And I've had the  Pleasure of helping the community who was impacted by epilepsy for the past three and 1/2 years. I come to this charity with a background in education and communication technologies, a professional past life in the service  Industry, municipal, provincial and federal government, as an instructor, University of Alberta, Norquest College and a fashion for building thriving communities and working with grassroots associations. I am a mother of two grown children, two boys, and I'm an avid reader and a world traveler. I think that kind of Puts it all together.

Teresa Makarewich, VAD Program & Services Manager

Awesome. Thank you very much. I have a few questions about Edmonton Epilepsy Association to gather information for our listeners. So to start with, who is the Edmonton Epilepsy Association as an organization?

EEA - Valeria P, Executive Director

The Edmonton Epilepsy Association, we call ourselves the EEA is a registered charity in operations since June 1960 with a clear mandate of supporting and empowering people who are impacted by epilepsy in northern Alberta. We say serve pretty much everybody north of Red Deer. We're proud of our grassroots history and how we serve the community, and we have Members, even in the Northwestern Territory, Northeast BC, and anyone who wishes to support our cause. We   Have our regional  Presence and our association is directly tied to the hospitals and main epilepsy clinics. Which are generally located in Edmonton, helping people who are diagnosed with epilepsy. Like many other registered charities with a focus on epilepsy across Canada, we were born with the idea of providing social and other types of support around the diagnosis of this neurological disease  In addition to the medical establishment . We often say that epilepsy, the epilepsy diagnosis, and the medical treatment are one slice of the pie in every person's  Life and a person's life is made of so many other elements and dimensions, and they are all impacted by epilepsy one way or the other, and these may not necessarily be dealt with  From a medical service perspective Beyond drug treatment or other surgery procedures. So that's kind of where we come into the conversation. We belong to the Canadian Epilepsy Alliance, which is a Canadian umbrella association that represents the many provincial and municipal associations across Canada that help like us to support people with epilepsy.

Teresa Makarewich, VAD Program & Services Manager

Can you give some history about your organization?

EEA - Valeria P, Executive Director

Yes, over the past 63 years, the EEA has served a yearly average of 5000 or more individuals and their families and caregivers. Everybody who lives with epilepsy in the Edmonton area, as well as the northern Alberta, Yukon and Northwestern Territory. Our potential outreach expands to more than 26,000 individuals,In our region of the province, who are impacted by this brain disorder.we know that a conservative number. There is around 66,000 people all across Alberta and we split our two regions between the north side and the South Side and that There are more than 300,000 people living with epilepsy in Canada in any given year. So one of our awareness statement is the one in 100  1% of Canadians are impacted by epilepsy and this makes epilepsy the 4th most common neurological disorder in our country and in the  World and in fact it is number one for children. So since 1960, our association has helped to improve the lives of persons living with epilepsy by providing information referrals,  support services and engaging in impactful awareness and education campaigns. While most of our services have been directed through in person programs for people reaching out our office location in Edmonton since the pandemic, like many other charities, we Have expanded our outreach and pivoted to using technology and we have been able to be even more inclusive with offerings online and delivering presentations, group and individual sessions over computer And over the phone. Since 2022, so last year we have expanded the services  Back to hybrid solutions. So we always keep in mind that the technology  Allows us to Get further, but we know that there's about 25 to 30% of our membership and people that  Are not necessarily connected online or through technology. So whenever possible, we offer not only the hybrid option so people can come to our to our office and they don't have to worry about turning a zoom link on or if the speakers are going to work or not. And whenever possible we also try to support transportation Costs or any other accommodations we can do to be as inclusive as possible.

Teresa Makarewich, VAD Program & Services Manager

That's awesome. You kind of touched on how do you help people in the community, but is there Any other ways that you help in the community?

EEA - Valeria P, Executive Director

We, as we were saying, we are not a medical establishment. So even though you know even a Google search sometimes gets people to give us a call and say, oh, you know, how can I get my next neurologist appointment? And we always clarify to people we are  Not a clinic. We do work very close with medical professionals in the field of epilepsy and our region is tied to two main centers, the epilepsy clinic at the Stollery Children's Hospital for Pediatric Epilepsy and the Copper Comprehensive Epilepsy Care Clinic at University of Alberta. 75% of our efforts Are usually focused on building And education about epilepsy and while seizure disorders are a common disease around the world and pretty much in history, we always say if you have a brain, you can have a seizure. So the possibility is endless. 

Seizure disorders are common diseases around the world. Epilepsy still remains kind of clouded with stigma and a sense of unknown and mystery, It is usually Diagnosed with at least two unprovoked seizures. So either the doctor or the parent or a spouse  Will tell that you know people in their family unit have had something that they couldn't explain otherwise, so. If the doctor. Comes up with those two undiagnosed, sorry 2 unprovoked Seizures that usually calls for diagnosis of epilepsy. And epilepsy is a  Diagnosis that remains for life, so seizures can be managed, but epilepsy never goes away. But again, even though so much is known, it's still a misunderstood condition. We almost have more knowledge and ability to talk to the Community and let people know in simple terms to understand what seizures are and what the impact of epilepsy can be on their life,  And as all lifelong disabilities, epilepsy, epilepsy falls under a category that we often relate to as invisible visibility. So something that we do for the community is to really support and spread that awareness and build education Because as you know, when a person  Doesn't have a seizure  They look very normal. So all of a sudden, knowing that the seizures that could come at any point in time make you unable to gain employment, or you need certain accommodations to go for post secondary education, you are Not allowed to  Drive unless you are six months siezure free. So all of these different situations impact the person, but when the person doesn't have the seizure, they look very normal. So there is added challenges to our access support from government funding or again talk to employers or in education institutions to get those accommodations in place. 

So seizures could happen at anytime and for any reason, and that unpredictability usually impacts the individual's life in so many ways, and they are really hard to explain because again, when I don't have a seizure, I look like a very normal person. So what is wrong with you? Why do you need any help? We exist as an agency to build understanding lower stigma  And provide social and other types of support. Our Members know they can reach out to our office, talk with someone who understands where they come from  We have specific programs for that. Attend social events  Even that feeling of being accepted in a social Event of any shape or form is a service that Truly makes a difference.  Now we do want to emphasize, and it's important that around 65 to 70% who get diagnosed with epilepsy at any age go on to be very successful in normal lives because the right medication helps manage their seizures very well. And that is a very high percent rate of success from a drugs perspective. Now the 30% of people that generally face more challenging situation and leading fulfilling lives because they have what it's called retractable  epilepsy Are extreme, serious and unfortunate cases. We are talking inability to live independently in ability to move around there You know there's a need of a network of support for that person to live a fulfilling life. So those folks often require additional assistance and support. Everybody with epilepsy has in the Back of their  Minds that those who care for them have that unpredictable chance that a seizure may occur at anytime, and even that alone could cause a lot of mental health challenges. Things we do want to stress epilepsy is not a mental illness issue is a physiological issue, but the unpredictability of the seizures or the side effect of medication and our control, the seizure can truly create that emotional sense of, you know, I'm planning tomorrow to do something and then all of a sudden  I am not in control anymore. In addition to our next campaigns, educational animation workshops and other programs like our information epilepsy booklets and the kids on the block puppet show that we do for free in schools across the province, we also offer individual support for our Members, ranges from memory coaching programs to system navigation support, Applying for provincial funding and other services, we offer mentoring programs and just lately a mental health for epilepsy service, which is access to a series of psychotherapy sessions specifically for people diagnosed with epilepsy.

Teresa Makarewich, VAD Program & Services Manager

That's a lot of stuff. Good job. What are some projects  The Edmonton Epilepsy Association has done in the community or is working on right now?

EEA - Valeria P, Executive Director

Yes. So from a strategic planning perspective, we plan to run a minimum of three main awareness campaigns; in March is the first one of the year because March is epilepsy awareness  Month. Then we do a campaign we call 25 days for epilepsy in June, and then we usually do one in October, specifically focus to educate kids and it's aligned with the theme of Halloween. So those are our three big pillars in terms of awareness campaign . we host displays  And awareness tables with main hospitals, marketplaces and collaborate with other agencies on an awareness campaign. But there are two key programs that we are extremely proud of. One of them is our two decade long original title, epilepsy information booklets. And we are the only North American agency to run this information booklets. It's a program of 11 original titles  That are specific focus For example, women in epilepsy, teens and epilepsy, safety and epilepsy. So we did I'd say five to seven years worth of research and for the last 20 years, we updated these on a regular basis and run these program s. They are 11 booklets, professionally printed and distributed absolutely free of charge across Canada in the 30,000 copies per year. So we take on through sponsorship and other and other support The costs associated with that and these copies of these booklet  Are in doctor's offices, EG, radiologist offices, in emergency rooms,  In hospitals as well as in other agencies across Canada and we have them in both official languages and we also have a couple of titles in other languages that were translated a  Few years ago. In 2024, we plan to add an additional, more inclusive layer to this set of publications. We got a grant to transform these books into audio book. And then the audiobooks will be expand our outreach and will be distributed absolutely free of charge through all the libraries in Canada. They'll be available for downloads on our website, and we're hoping to also getting to some markets of those audiobooks platforms. So again, if a person doesn't have the Ability to either read it online for free or get a free copy They can just put it on their on their audiobook. Favorites .we ran 3 performances of a kids on the block show,It's a live puppet show that we there's only three or four other agencies in Canada that do this particular skit, and it's 2 skits to teach kids in elementary grades so up to Grade 5 how to be a good friend and what what first stage  Provide with epilepsy for a friend that may have seizures. We want education webinars in collaboration with epilepsy in  And these are monthly and bimonthly sessions with specialists, and the focus is explaining epilepsy and epilepsy services available in our province, as in Alberta, and we also hosted 2 specific websites, our association website at edmontonepilepsy.org And since 2022, a dedicated website to explaining epilepsy to kids and their families in their language that is suitable to their different grades and that is called epilepsyweb.Forkids.ca. We also have a solid presence and followers on social media. We engage in a  Variety of community. Event run fundraising programs and as I was saying before, we offer social events, keep very much in mind the possibility that a person attending may have seizures, so we are very careful with, for example How loud the sound in the in the room  Maybe we stay away from flashing  Lights we usually when we do a party we rent also a quiet room to allow people who may feel a little bit overwhelmed by too much  Too many people around to take those 15 minutes, half an hour just to go on the side and just calm things down  Sometimes that could be a trigger, a trigger for seizures.

Teresa Makarewich, VAD Program & Services Manager

So much there. Can you please share your thoughts on how the EEA contributes to the disability community to help make people's lives better?

EEA - Valeria P, Executive Director

Yes, in 2020. So as we did a little bit of a leadership change and as I was saying, I came as soon as we had to close the doors for the during the pandemic the first year in the pandemic, the EEA Board of Directors, we thought our strategic planning approach and we came up with a redefinition of our vision. Our vision is empower People who live with Epilepsy. Yes, the words and the vision statement where very intentionally selected. We chose the word  Empower instead of simply saying support to name the many ways we can help each other be the best we can, no matter the disability that impacts our life and something I forgot to mention before is  In many, many cases, epilepsy comes along with other comorbidities. Either could be the originating factor for other conditions or vice versa. So it's not uncommon to see a person who, for example, could be suffering from Alzheimer disease or autism  And also suffer from epilepsy. And certain forms of pediatric epilepsy such as Dravet syndrome have also learning disabilities that accompany that condition for the child . people with disabilities, whether they be visible or invisible, all have the right and the power with the right support to be the best they can. In the case of epilepsy  We are here to empower for those people our to be  The best versions of themselves. We believe in that right and we know where that power with our direct community rented access Programs with the fact that every phone call, e-mail or text that we receive here always gets answered, answered personally, and if we don't have an answer directly because we are not necessarily, you know, we're very tiny, there's only two of us as a staff in the office and then about 30 volunteers we find we find a way to get an association or an agency That can help that particular person’s issue or need. We chose to classify the services we provide to people who live with epilepsy and for that for for us, that includes those who are directly diagnosed  And those who support them, they be family members, spouses, you know, siblings, parents, whatever epilepsy impacts the individual, their families and their friends and the communities they interact with  And we try to provide services for the whole Community.  we increase understanding of seizures. We provide seizure first stage support and learning how to cope with the diagnosis, the side effects of the medication and alternative and adjective supports, and ways to manage the seizures.

We create small and larger community groups to welcome everybody. We try to be as inclusive as we can possibly be. And we foster environments of respect, understanding and access to all experiences we have been doing over the years, field trips to special places in our community. As I were saying, social events for people who suffer from seizures and we Know that  If even the small party one once a month, we host a bingo game in our office and there's a group of 10-15 people that usual and they come in and they don't have to pay absolutely anything. They're just showing up, they're going to have a coffee, some treats, engage in a couple of hours of  Catching up with each other, win some prizes. That is could be as small as that particular way, and again we Know that  Government services cannot be that tiny and provide that impact because it's just not what governments can do. So that's where we We also build resources to foster a sense of pride and encourage kids and adults alike to be the best versions of themselves, and we are proud to call ourselves an independent charity. We don't receive ongoing operational fundings from everybody, and in 63 years we are extremely happy to  Always have maintained a positive budget, so we ran casinos like super, you know like so many other charities out there. We run fundraising campaigns and we take donations from members. and in the last 3-4 years we have tried to also access grants funds for specific projects. So as I said, there's only two staff that we have a core membership of about 30 volunteers that pretty much make everything happen. So  And we always try  To connect with our members at least once a year and they kind of tell us, you know  Continue on this , Do this specifically ,Or why don't you think and try to do something else. So the imagination of our members is pretty much our the limit.

Teresa Makarewich, VAD Program & Services Manager

You mentioned volunteers, and my next question is how to get a hold of the Edmonton Epilepsy Association. How do people get Involved with the Edmonton Epilepsy Association.

EEA - Valeria P, Executive Director

So the easier way, because still it's a reality, a lot of people can't and go on Google is connect through our website. Once you put Edmonton epilepsy or Edmonton epilepsy.org in Google or not, you're going to find our website and through there e-mail access is usually the one that gets the fastest response And the e-mail is info@edmontonepilepsy.org . the next best way is to call our office 780-488-9600 and our our phone line receives messages and we try always to return every single phone call within two working days. Our office is located by Westmount, literally across from from the mall. While we are a small office, we always take pride in ensuring that every question is Answer whether it's through e-mail or  Phones. You can also follow us on social media or on Instagram  X. Former Twitter and on Facebook and LinkedIn. But I'd say your number one chance to really get to learn and even become a member is our website, edmontonepilepsy.org.

Teresa Makarewich, VAD Program & Services Manager

What is an interesting fact about Edmonton Epilepsy Association that everyone should know?

EEA - Valeria P, Executive Director

That we exist! We are so thankful that you gave us a chance to do a little bit of a a promotion and and awareness about our association. As I was saying a little bit ago a while ago that generally by the time we answer questions emails, Reach out people Through our program, we usually serve directly. At least 5000 people per year. But as I Was also saying there's more than 26,000 people just in our region, so we are not where we could be in terms of Membership. And if people have issues with financial limitations or anything, we always are open to offer membership for free. But the services that we do offer are for our members because we are a member type of association. And so we're really hoping that folks learn more about us existing And that become members, they help us grow our voice for people impacted by epilepsy. And then the larger our numbers, the greater our voice, the more presence than we have at tables explaining people What epilepsy is and how what are the challenges, but also the fantastic achievements of people who live with seizures. once people get to know us, they usually tell us that, you know, they're amazed about all the programming services we run, especially because we have a very limited budget and they are thankful to discover that there is a community out There are people that Go through their same challenges that they go to and as I was saying, as hard as it is to believe, there's so much stigma around this particular disease, that when a person gets the diagnosis, they don't even tell their family members so and then you, you know, everything you get to do   Gets to be so much harder because you feel that if you're going to tell somebody, you're going to feel ashamed. Oh, what happens if I have a seizure in front of another person? Well, if that other person knows what to do You don't feel ashamed they're going to provide you the support and then they're going to make sure that there's accommodation to make you be the best you can be. So, we wish to thank you again for this chance to speak about us.

Teresa Makarewich, VAD Program & Services Manager

Thank you again. For your time and energy today, Valeria, your support to the community is of value to all. Is there anything else you want to say today that I haven't asked you?

EEA - Valeria P, Executive Director

No, I think we covered a lot and I think it is going to be a long podcast.

Teresa Makarewich, VAD Program & Services Manager

Awesome. So thank you again for joining Vad’s podcast . voice of Albertans with disabilities is across disability nonprofit organization of and for people with disabilities. We are guided by the principles of accessibility, equity and inclusion. Learn about VAD services on our website atVadsociety.ca or call 780-488-9088 For more information. If you have a topic you would like to hear more about in a podcast, please e-mail myself at vad@vadsociety.ca  The topic, ideas, speaker suggestions, or your feedback signing off for the day. Together, we hold the power.