From Classrooms to Communities - Parents Visionary Journey in Education, Living, and Advocacy for Inclusion and Epilepsy Funding with Jillian and Scott Copeland

[00:00:00] I'm Effie Parks. Welcome to Once Upon A Gene, a podcast. This is a place I created for us to

[00:00:10] connect and share the stories of our not so typical lives. Raising kids who are born with rare

[00:00:15] genetic syndromes and other types of disabilities can feel pretty isolating. What I know for sure is

[00:00:22] that when we can hear the triumphs and challenges from others who get it, we can find a lot more

[00:00:27] laughter, a lot more hope and feel a lot less alone. I believe there are some magical healing powers

[00:00:34] that can happen for all of us through sharing our stories and I'll take all the help I can get.

[00:00:43] Once Upon A Gene is proud to be part of Bloodstream Media. Living in a family affected by rare and

[00:00:49] chronic illness can be isolating and sometimes the best medicine is connecting to the voices

[00:00:54] of people who share your experience. This is why Bloodstream Media produces podcast, blogs and

[00:01:00] other forms of content for patients, families and clinicians impacted by rare and chronic diseases.

[00:01:06] Visit bloodstreammedia.com to learn more. Hi there and welcome to the show. This is Once Upon A

[00:01:11] Gene and I'm your host Effie Parks. I hope you can hear me okay. I am in Montana for Spring Break

[00:01:18] and they don't have the World Wide Web in Montana so I'm holding up this transistor radio and I'm

[00:01:24] standing on the top of my parents' roof. So I hope this message is getting to you.

[00:01:29] I have such a great episode for you today but before you listen to this put it on your list

[00:01:35] or go back and make sure you check out episode 244 right before this with our friend Amber

[00:01:40] Freed from SLC 6A1 where we're talking about the importance of ICD-10 codes which is an

[00:01:47] internationally accepted diagnostic code used to describe and track our rare diseases.

[00:01:52] Super important so go check out the episode there's a call to action, there's an editable template

[00:01:57] for you to send off to your state representatives so please go check that episode out.

[00:02:02] Okay today I think I found one of my new favorite couples you're gonna love them.

[00:02:07] They're so full of energy and passion and I'm just I was like glowing when I was talking to

[00:02:13] them because they made me so happy. A husband and wife, advocates and pioneers who have really

[00:02:18] just transformed this personal journey of having a you know a beautiful child who was diagnosed with

[00:02:23] epilepsy at just seven months old and they took off on a quest to create supportive and inclusive

[00:02:29] environments for kids with disabilities. So they founded a school, they founded an amazing

[00:02:35] inclusive living community and they also founded the Epilepsies Action Network. They are a force

[00:02:41] and their voice is so important and they have taken it to Capitol Hill. They're not only shaping

[00:02:47] right at home living for families and taking care of their loved ones but policy as well. So

[00:02:52] I hope you learn so much and get so jazzed by this episode, they're incredible and you're

[00:02:58] gonna learn a lot today so please enjoy my conversation with Jillian and Scott Copeland.

[00:03:03] Hi Jillian and Scott welcome to the podcast. Thank you happy to be here.

[00:03:08] Thank you. Thank you very much. Yes, so we were connected by our friend Eileen over at the Rare

[00:03:14] Epilepsy Network and she sent me a big old list of all the magical things that you're doing and I was

[00:03:19] like uh excuse me what time is it? Are they eating? I'm really looking forward to digging in and

[00:03:26] sharing some of the resources that you have so kindly built. So can I please just get a

[00:03:32] brief introduction of the two of you and a little bit about your family? Sure. So I'm

[00:03:36] Jillian. This is my husband Scott and thank you again for having us. Well let's see our story

[00:03:42] really starts 30 years ago but since then we've had we have four sons and we are here mainly to

[00:03:49] talk about our third son, Nickel who's about to turn 25. When Nickel was eight months old he

[00:03:55] had a very long prolonged seizure over two hours and it started you know a different type of

[00:04:01] parenting journey for us and a different type of maybe even seeing community through a different

[00:04:07] lens maybe through Nickel's lens. Since then we've embarked on well raising our kids together

[00:04:13] obviously and exploring opportunities and possibilities for Nickel over the years and it's

[00:04:20] you know led us to lots of different paths that I think we're going to talk about today.

[00:04:24] Surrounded by a bunch of stinky boys Jillian. Well yes you know what they're actually not

[00:04:30] stinky well maybe one I think I'm more stinky than they are truthfully honey would you agree?

[00:04:38] She loves all the boys. Cute how about you Scott? A similar path I mean in my profession I'm a

[00:04:46] affordable housing developer real estate developer and which has helped us along

[00:04:52] the way actually with some of the projects that we've been working on of late but yeah it's

[00:04:56] been a it's been a very interesting journey with Nicholas over the years it's given our family

[00:05:04] certainly me and I think I speak for Jillian a lot of meaning and purpose and seeing the world

[00:05:10] through a completely different way than perhaps I expected to when we were having our third son

[00:05:14] but it has been an amazing journey he's a light for us and for our entire family our

[00:05:22] extended family he's having a 25th birthday party with friends and family that that may number in

[00:05:28] the hundreds I don't even know how many people are going to come. He has been our our inspiration

[00:05:34] and our motivation for a lot of things that we do and really a foundation of our family and our

[00:05:41] other three boys have embraced that and their partners have embraced it and you know we feel

[00:05:49] blessed that he is in our lives and has allowed us to see things a little differently so it's been

[00:05:57] very special. That's so beautiful thank you I love Nicholle's name and I hope to see pictures from this

[00:06:03] birthday bash that sounds fair enough but we can make that happen. Cool so I remember when Eileen

[00:06:09] mentioned you she said that Nicholle has had extensive genetic testing and at 25 still

[00:06:16] there's no underlying answer for anything of what has caused his severe epilepsy how have the two of

[00:06:22] you managed to sort of to navigate this uncertainty and like maintain such positivity and strength

[00:06:29] throughout it all? That's a great question well I would start with that we Nicholle's the lead

[00:06:35] here he's the model and we follow his example and he will have a terrible seizure and he'll

[00:06:42] have to be medicated and he'll feel awful after and he'll go to sleep in the next day he wakes up

[00:06:47] with joy and sunshine usually and and he's the lead for us we've had to manage a lot of things

[00:06:56] over time for me maybe more so than Scott. Fear is a big one you know maybe some lots of worries

[00:07:05] over time and again just taking Nicholle's lead the I can do attitude the the sky's the limit

[00:07:13] and I think that really is is how we feel that we we don't have the power the control to change

[00:07:20] lots of things that we wish we could but we do have a choice in the way that we see it

[00:07:25] and how we live our life and we're going to live to the fullest and share the love

[00:07:32] that we can and feel the love that we can and you know that that's how we live life and it's

[00:07:36] really a beautiful thing. Yeah I agree I think that we've been we have very early on by the way

[00:07:43] we came to terms with the things that were just not in our control and and we're both very

[00:07:48] controlling people by the way so so it's not it was not an easy reconciliation but I think

[00:07:55] when we when we kind of got our heads around that there's just there's just certain things

[00:08:00] and Nicholas too by the way he you know has development delay developmental delays along

[00:08:05] with this but he he understands that that there are just things that we cannot control

[00:08:12] and that you just have to work around them and and I and I think that he has really been

[00:08:19] an amazing model and honestly I think that you know he he shares a lot of love and a lot

[00:08:24] of joy but but I think that the people that really know him friends and family that really

[00:08:29] really really understand him and know him you know have a great appreciation for that that he's

[00:08:34] just come to terms with the fact that there are things that he cannot control

[00:08:38] and um but he's going to keep going and and so it's it has been a great inspiration for us

[00:08:44] and for the people around them. Oh yeah absolutely I think that's one of the most

[00:08:48] special things to watch right is sort of the difference that it makes in other people.

[00:08:52] Yeah I connect so deeply with what you said about choice and how how we can choose to move

[00:08:58] through this if we if we really want to look at the big picture so I love that you said that.

[00:09:03] I think you're just doing this podcast as a choice and it's a great one.

[00:09:06] Yeah it's really awesome. Thank you. You know Eileen called you both disruptors which I'm

[00:09:11] going to have to disagree with her on. I would say that this is like some magical change maker

[00:09:17] instead we're going to talk about three really profound things that you have worked on in

[00:09:23] Nichols honor and one of which is a school I'm probably not going to pronounce it correctly.

[00:09:29] Diner Deener school? Deener yep. So so tell us a little bit about that and maybe Nichols experiences

[00:09:37] needs that influenced the founding of the school. So I guess when Nichol was six he uh he attended

[00:09:44] a school which is a great school for a lot of kids it wasn't particularly the best fit for him

[00:09:50] and you know one day I you know it's coming home from the school and frustrated and you know maybe

[00:09:56] coming to terms with you know acceptance around hey this isn't going to work for him and I'm not

[00:10:01] sure there's anything out there that really will. And I called Scott and said you know at

[00:10:05] its time we need to start a school so luckily you know we're privileged we're smart I'm an

[00:10:11] educator by trade and we got it together in a couple months we found some really great

[00:10:17] partners professionals to help us and we started the Deener school in 2007.

[00:10:22] Nichol was seven at the time he attended the school and I ran the school for the first six years

[00:10:29] and cried a lot it was not an easy venture to take on and Scott was incredible and you know

[00:10:38] probably the quieter the quieter one but did almost as much work as I did

[00:10:43] on a balance everything especially the financial parts and just a support to listen to me which was

[00:10:49] really needed and helpful. And I think you know Nichol what he needed which was a what a lot of

[00:10:54] kids needed and still do is a more of a holistic education where educators are collaborative where

[00:11:02] they're built in therapeutic supports and interventions during your school day what I

[00:11:09] had found was you know pull him out of school and then take him to OT and PT and speech and

[00:11:14] nobody really talked with each other and I wondered like how is he skill building and

[00:11:18] applying these skills if nobody's working on the same things if nobody's talking to each

[00:11:23] other if we don't have mutual goals for him. And so that's what this school is about it's

[00:11:28] a multi-sensory experiential approach with very talented educators and therapists including

[00:11:34] behaviorists you know boots on the ground people working not only with the kids but also with each

[00:11:39] other and that really is the game changer. There are elements of the connection between

[00:11:44] movement and learning and social thinking and all of these really really essential needed

[00:11:51] curricula and needed strategies to use for kids that you know don't learn traditionally

[00:11:57] and learn through the senses so we are seeing some really amazing things at the school we're

[00:12:03] actually we're moving into our own building for the first time when we'll have a capacity of 120

[00:12:09] students we currently have 75 with 37 educators and it's a really neat place and I believe what

[00:12:16] it did for nickel was it gave him this very strong foundation on which to build it allowed

[00:12:23] him to like who he is and understand areas of need and also really appreciate and feel good

[00:12:31] about areas where he shines and that really is what the school did for him it gave him this

[00:12:37] childhood much like our others that you could it was a self-esteem builder and uh hey you know how

[00:12:43] do I think about my learning being met a cognitive how do I think about my thinking and it really

[00:12:48] turned out to be a beautiful thing our kid is quite social he's quite skilled and I'm not sure

[00:12:54] if he would have gotten to this place without that type of foundation. Talk about dreaming big

[00:12:59] I feel like that's one of those things that us as families kind of lie awake at night and worry

[00:13:04] about right is our kids education and experience at school and something else you said that really

[00:13:09] struck me was it made him like himself I love that so much. So tell us like where the school is

[00:13:15] and how families qualify to attend it and like is this funded solely through like a family business

[00:13:22] or do you have like state programs? We are we are not a funded program which means that

[00:13:27] we don't receive money from the state or the county it is private pay which is very difficult

[00:13:33] which is why we have a large amount of financial aid going to people who cannot afford to come.

[00:13:39] We chose to do this purposely because we wanted to maintain the quality of education and oftentimes

[00:13:46] I have seen over the years that when you are a program that is funded you're spending a lot

[00:13:50] of your time not with your students but on paperwork and on things that in my opinion just

[00:13:55] don't matter they're not going to benefit the student. So that is why we chose to not accept

[00:14:00] any money state or county money so it is expensive but it's probably very similar to other private

[00:14:08] independent schools in the area but you're getting a whole lot more just even by the ratio of

[00:14:14] teacher to student you know even and with all the other you know amazing kind of programs

[00:14:19] and therapists that are involved in this you know small little school we currently have 75

[00:14:24] students and we're hoping to have 120 next year and it's you know an application online at the

[00:14:29] denierschool.org and I can't tell you about the qualifications because I am not there day to day

[00:14:35] so I don't know exactly what they're looking for in a student anymore but I'm sure if you are

[00:14:41] looking out if you're out there looking for a school or an amazing environment for your child

[00:14:45] that learns differently definitely take a look and see if you it's an opportunity for you.

[00:14:50] Yeah it sounds amazing I'm like how do I pack up and move over there and get forward in school.

[00:14:55] It's pretty fantastic and we really had researched you know physically virtually all over the country

[00:15:01] to see what was out there we could have you know we had the we could have moved anywhere

[00:15:05] and we couldn't really find anything that was out there like this and I'm sure there are more

[00:15:10] schools out there now but there's nothing local that even touches Dean. There's nothing that I've

[00:15:14] ever heard of that remotely touches even this brief description of it no I bet it feels like

[00:15:19] just family at some point you know and not necessarily a school with pupils and educators

[00:15:26] but it's pretty close knit. Do you have off the top of your head by chance like a favorite story

[00:15:32] from something amazing happening there with the students? That's a great question I'll think

[00:15:37] about it. You gotta have a ton of stories my good idea. I mean it just sounds like a wonderland.

[00:15:44] Well while she while she's thinking about this story why she's thinking about the story I'll

[00:15:48] share with you that recently we we ran into some of Nicholas's classmates that you know are now also

[00:15:57] 25, 24, 26 whatever and just watching their journey through the educational process they've

[00:16:04] gone to some of them gone to college and they're out in their workforce. Some I think one went back

[00:16:09] to be a volunteer teacher a substitute teacher at Deaner and just watching that kind of growth

[00:16:15] and that's when the school had you know 12, 14, 18 students and so it's been an amazing thing to

[00:16:24] watch over honey how many years has it been? 17 years. So it's really kind of cool to watch it's

[00:16:30] been it's been really neat. Wow my cheeks hurt I'm smiling so much I love that. I'm not sure

[00:16:36] I have a really like a favorite story but there is one that sticks out that in our second year

[00:16:42] of Deaner the first year we started with five students we ended with 11, the second year we

[00:16:47] started with 26, the third 31, the fourth 40 so we gradually increased but in the second year

[00:16:53] we had a young man I think he was in third or fourth grade and you know he was slightly

[00:16:58] socially awkward and and he came in he was shy and worried and and he spent the day

[00:17:04] and afterwards at the end of the day when anybody would visit they would spend a little time

[00:17:09] a little in the afternoon with the admissions person just to sort of recap and regroup and

[00:17:14] Lois is our amazing admissions director just filled with heart and we happened to share an

[00:17:20] office at the time and I'm listening to her and she asks this young man you know wasn't a young

[00:17:25] man he was a boy she asks him you know how was your experience and he just looked at

[00:17:29] her square in the eye and he said um I finally found my people and I think that's one of my

[00:17:35] favorites that you you belong and everybody needs a place to belong oh my gosh I love that so much

[00:17:40] that's so so special thank you for sharing it so you two are like okay let's solve one of the biggest

[00:17:47] problems we have as parents who have kids with medical issues and disabilities at school and then

[00:17:53] let's solve the even bigger one that keeps all of us up at night for our entire lives which

[00:17:58] is what do we do when they're grown up and what do we do to prepare them for a future

[00:18:03] when maybe we aren't going to outlast them so you built something else called the hold on what's it

[00:18:10] called main street main street okay tell us about main street when Jillian ended her tenure as the head

[00:18:16] of school at dean or we took a little break and you know I don't know a year later a year and a

[00:18:22] half later she came in one day and said we have to build a housing project so there was a kind

[00:18:29] of constant theme that that ran through this and so after after a long period of research I mean years

[00:18:35] of sort of uncovering what what was out in the marketplace and again I mean almost internationally

[00:18:42] but certainly nationally you know Jillian really came up with a model that that was was what main

[00:18:48] street became it's a 70 unit building in Rockville which is a city in in Maryland and 25 percent of

[00:18:57] the units are set aside for individuals with disabilities and 75 percent of the units are

[00:19:03] affordable meaning that it's serving households that are in 60 percent or less often case 50 percent

[00:19:09] or even 30 percent of the of the area of median income and more importantly is on the ground floor

[00:19:16] is about 10 000 square feet of community space and then the the secret sauce of everything is

[00:19:22] Jillian and her team in the nonprofit that that runs you know countless programs and and opportunities

[00:19:30] for everybody it's an inclusive environment so it's not set aside for anybody it's it's it's

[00:19:37] available for everybody and it's really you know kind of you know in a nutshell it's a place

[00:19:43] it's a continuation of Deena in a way but it's really a place for people to you know find

[00:19:47] they're happy to really you know be a part of a community and to belong and and it's uh basically

[00:19:55] has become our fifth child in a lot of ways um it is a it is a very very very special place and

[00:20:02] you know the the stuff that the building is fantastic that that was kind of the easy part

[00:20:07] but but the everyday just is really moving needles and changing people's lives and

[00:20:14] giving opportunities and it's it's it's great it's really a magical place um and I know Jillian

[00:20:20] could go on and on about it and and I hope she will but that that's a kind of background for

[00:20:25] for us starting it yeah I mean all of us families talk about it all the time of making a compound

[00:20:30] for our kids right yeah like this school and this living community definitely sounds either

[00:20:37] like a beautiful dream come true or science fiction I gotta tell you because nobody else

[00:20:42] what are some of the obstacles in creating more initiatives like this like how can

[00:20:47] how can we make this bigger how can we make more of these yeah that's a great question

[00:20:52] the obstacles money for sure um and how we can make more uh where we're working on that

[00:21:00] at main street we do we do a couple things Scott mentioned the living and our community center

[00:21:05] space we are you know we are an apartment building and um we are a community center

[00:21:12] membership based community and although anybody can join anytime you don't have to be a member

[00:21:18] but members get priorities and discounts and you know whatnot and we have about 250 members

[00:21:23] that come and join us for activities in different tiers of membership but I think what's important

[00:21:28] to note about main street is that it's not just there the ground floor that the community center

[00:21:36] the programs around education learning movement connections stimulation engagement all of these

[00:21:43] things are for everybody of all ages stages and abilities not just for residents of main street

[00:21:49] when Scott and I sat down and we you know sort of back in the envelope that's a term he

[00:21:54] often uses said you know what's pie in the sky what what what do people need you know I've interviewed

[00:21:59] 80 adults with disabilities and their families to ask them how do they want to live what do

[00:22:04] they need to make their life richer more meaningful more connected and that's how we shaped the

[00:22:10] spaces at main street that's how we designed the building mainly so there are 250 plus members who

[00:22:19] come in and out some daily some weekly some monthly some quarterly that join us for engagement but only

[00:22:26] 40 people out of the 250 actually live at main street so I think that's really important to note

[00:22:33] that our pillars of main street are whether it's programming whether it's housing you know you're

[00:22:39] living there there are pillars are inclusivity accessibility and affordability and quite frankly

[00:22:46] you can't have inclusivity without the other two you know that's how I feel and very strongly about

[00:22:51] that too so we do the living very well you know we have about 58 people that live at main street

[00:22:57] who have self identified or the parents have identified them as having a disability out of

[00:23:02] about 105 110 people in the building so it's a little more than half we have 250 members that

[00:23:08] come in and out part of our programming and community engagement we offer 10 to 12 weekly

[00:23:15] programs everything from cardio dance party to zumba to baking classes to get social working on

[00:23:22] social skills I mean we we have again everything for any passion purpose interest meaning whatever

[00:23:29] you want we we are we are bringing all different kinds of people together to talk about all different

[00:23:35] kinds of subject we talk about the intersection between race and disability we talk about

[00:23:42] you know with the workforce development and what that looks like we talk about communications and

[00:23:46] marketing and accessibility in our communications and marketing so we provide a lot of different

[00:23:51] subjects and topics for a lot of different people which is really amazing and the third

[00:23:56] part of what we do and this is a long answer to your very short question but the third part

[00:24:01] of what we do is education and advocacy and that is because we understand this is really really

[00:24:07] difficult to do and so we have to advocate for more affordable housing with the disability

[00:24:12] narrative so that affordable housing is is built but there are set-asides and designated spaces

[00:24:18] for a designated housing for people with disabilities most people with disabilities

[00:24:22] do not live independently because of the barriers which are affordability and accessibility

[00:24:28] and that is just shameful I think it's shameful and you know not giving people an

[00:24:32] opportunity to live a life of choice and independence is just something in this day and age

[00:24:37] that just shouldn't be there it's pretty disgraceful in my opinion so part of our job is not just

[00:24:43] providing opportunities for people to live independently with choice providing community

[00:24:48] engagement but also this education and advocacy around the number of staggering numbers of

[00:24:54] people with disabilities and other issues you know mental health issues as well that are

[00:25:00] looking for inclusivity affordability and accessibility and so we're doing that in many

[00:25:05] different ways we work with inclusive houses around the country we work locally with

[00:25:11] with inclusive houses in Maryland DC and Virginia we're really trying to go to our

[00:25:17] you know lobby our politicians to say hey we need some more of this we're going to state

[00:25:22] local and federal people to say you know this is this is the data that we've collected at

[00:25:27] Main Street we know that our residences that live at Main Street that we are improving the

[00:25:33] quality of their life it is a statistical significant difference from before they moved to Main

[00:25:39] Street to after they moved to Main Street they are their lives are improved they are enjoying

[00:25:45] life they like their community that they're living in they feel healthier they feel more connected

[00:25:51] and so do our members by the way so it isn't just about independent living a big part of this is

[00:25:57] feeling this wrap around community engagement and support and I'm just going to top it off with

[00:26:02] one more thing which is Main Street is the first around the country to offer this type of living

[00:26:10] and and the reason is because we have a mantra that's it's called BYOI as the acronym bring

[00:26:15] your own independence and that means whether you get an apartment at Main Street and you live there

[00:26:20] or you don't get an you haven't gotten an apartment or you don't want to live

[00:26:24] you know there you want to live somewhere else but you want to join us for programming and

[00:26:27] community engagement then you bring your own independence with you and that may mean that

[00:26:32] you bring a mother or sister a caregiver a brother whatever or it may be something physical

[00:26:37] that you need to help you access our programs you bring that with you we don't provide

[00:26:42] any one-to-one supports at Main Street we have a huge staff of nine we run amazing programs

[00:26:49] but if you need that extra additional support to achieve independence you bring that with you and

[00:26:54] this mantra kind of came by chance a parent brought it to us and now that it's happening

[00:27:00] our parents including Scott and I are seeing our children rise to a level that we never ever

[00:27:07] thought they could rise to at least for us at a young age of 25 you know our son is living

[00:27:13] independently and some of that is because he comes down he feels safe there's a sense of

[00:27:18] community efficacy people know his name there is a place where he belongs and all of these things

[00:27:24] are you know not only determinants of health but they're just really essential in people living

[00:27:29] a quality life oh my gosh you just filled my cup seriously um I feel like I just went to church

[00:27:34] preach Jillian wow I think this is really gonna spark a lot of people to stand up and help

[00:27:39] and see how they can make a difference in this area and I'm I'm really just mystified

[00:27:43] as to how you've accomplished it and just a little speechless really well I'm very bossy and so um that's

[00:27:50] how we've accomplished I have a I have a hugely talented and very efficient husband even though he

[00:27:56] hates when I talk about him but it's true and so I think you know you we built a task force

[00:28:02] of people local people who were very engaged and we said to them look I mean most of them

[00:28:07] I think 19 out of 20 of them had a kid with a disability and that just it just makes you fierce

[00:28:14] right sadly but it does and we we sat down with them and said look we want to do this but we need

[00:28:20] all of you we need your families your friends your colleagues your voices we all have to do

[00:28:24] this together and that's how it happens it's organic amen who's in charge of making a tv show

[00:28:31] slash a documentary out of wonderland main street yeah how about you why don't you bring it

[00:28:37] you know my friend daniel defabio from the disorder channel sort of close to you I feel like we need

[00:28:43] to send him down and get some footage of this all right bring it on Daniel I mean what if the world

[00:28:48] could see this right because nobody they don't know about this and and by the way Effie the world

[00:28:54] should see this and I'll tell you why because it's not about disabilities and it's about connection

[00:28:59] it's about kindness it's about dignity and respect and if you build places like this we will have a

[00:29:06] kinder softer more dignified community and we wouldn't have all the shit that's going on here right

[00:29:11] now in the world we really wouldn't amen oh my gosh I have chills on my body usually I do that to

[00:29:18] people in a very bad way oh yes trust me we all know the other side of a rare parent

[00:29:26] okay and here's our third thing yes there is a third thing tell us about the you found it something

[00:29:35] called the epilepsy action network tell us about that the epilepsy's action network is

[00:29:41] another group of very committed mothers and me came together actually a group of people that

[00:29:50] had been very close in the epilepsy space for a long time had had sort of a kitchen cabinet

[00:29:55] discussion about what could we what would we do if we had the ability to get more funding from

[00:30:03] the federal government or from other sources you know what is it that we can do in research

[00:30:09] development and you know patient care and family care and all these things that that

[00:30:15] you know dramatically impact people individuals with an epilepsy and it's epilepsy is plural

[00:30:22] because as you are well aware now there are you know many many rare forms of epilepsy

[00:30:30] and so again in an inclusive nature we're trying to bring this relatively fractured

[00:30:37] of getting better but sort of fractured community together with a singular voice

[00:30:43] in in a lobbying the federal government to provide more funds for the epilepsies and you know epilepsy

[00:30:52] impacts one in 26 that's the number I would argue it's probably much higher than that candidly

[00:30:59] half a million of the three and a half million or 3.4 million people that have epilepsy are

[00:31:04] children and it's an underfunded disease in the economic impact is enormous 50 billion dollars a

[00:31:12] year I think is 58 billion dollars some some number that is astronomical and unfortunately

[00:31:20] there hasn't been you know great breakthroughs there have been you know some advancements

[00:31:26] in in in medication and research etc but we have a long long way to go and so the opportunity was to

[00:31:36] again get get the community together hit congress up for our fair share I think I think that may

[00:31:43] be where Eileen you know referenced the word disruptor we we we want to look at that as a positive

[00:31:49] sort of sort of rattle the cage a little bit and get a little more attention and in the couple

[00:31:54] years that it's been in it's pretty slow moving because you're dealing with congress but we've had

[00:32:01] some huge successes we have a caucus both in the rep in the House of Representatives and on the Senate

[00:32:08] side which matters quite a bit because you have champions now elected officials that are champions

[00:32:14] of the cause we just learned yesterday that in the in the bill that was you know finally passed

[00:32:20] that language that we had asked for was was actually put into the HHS side of things the

[00:32:29] health and human services side of the budget which we are very excited about we have a great plan

[00:32:34] looking forward for the next couple of years that that hopefully we can really really move a needle

[00:32:40] and get a get a national plan for the epilepsy's that that you know again incorporate all

[00:32:47] segments and get a little bit more direction and assistance with some federal funding that I think

[00:32:53] can really really move the needle and people need it and it's our time you know and now's the time

[00:32:58] it's it's our turn and and we we need to we need to make some stuff happen and I think we will

[00:33:05] you got that right I think my mother-in-law is going to be very intrigued by this part of

[00:33:09] the show she's worked in policy her whole life so I'll make sure she checks it out because

[00:33:13] maybe she can help you yes we would love it Effie I'm going to give you the the quick down a dirty

[00:33:19] lowdown of how this really got started because Scott won't so Eileen the fabulous and talented Eileen

[00:33:26] Miller who really is is moving this train forward and is brilliant she was at a party with us

[00:33:32] and some might say she got my husband drunk and took advantage of me because on the way home

[00:33:40] in the car Scott says to me uh oh I don't know what I got myself into with Eileen and I said I do

[00:33:47] so and Eileen called me the next week like guess what I think this might happen so

[00:33:52] that was a really beautiful thing but the truth is that you know we've been living with epilepsy

[00:33:57] for almost 25 years now and I mean my voice might crack because you know as you know and many

[00:34:03] other listeners who either have epilepsy or have a child with or sibling with epilepsy or family

[00:34:09] member with epilepsy um it's some hard stuff and the unpredictability and uh you know for us

[00:34:17] you know nickel requires medication to get him out of a seizure which means someone always has

[00:34:21] to be with him because he can't medicate himself and you know the brain surgery and the visits to

[00:34:27] the doctors and the meds I mean we're on five anti-seizure meds and many others too just

[00:34:32] to balance the mind and you know it's a it's a difficult thing and you know again we choose to

[00:34:38] look at this as a as a beautiful life experience but it's a hard a hard experience for him and

[00:34:45] oftentimes for us too um and so you know nickel is really the crux of you know a lot of the things

[00:34:52] we do and I'm so grateful to Eileen for knowing the landscape of epilepsy and knowing

[00:34:57] that they're all these amazing players in this space um they're brilliant brilliant and talented

[00:35:03] minds but if you don't have a collective voice and you don't collaborate and you're not unified look

[00:35:08] it's just like why I started the deaner school then we are not moving this train forward in the

[00:35:13] in the way that we need to and we looked at um you know other organizations ALS and

[00:35:19] Alzheimer's and MS and we thought like okay these are neurological diseases that are

[00:35:24] impacting lots of people and boy do they deserve to get their share because there are terrible diseases

[00:35:30] but epilepsy isn't getting much and we think it's our time and we think it's it's time where all of

[00:35:37] these brilliant and talented people and organizations that do so much good work make a commitment

[00:35:43] to move this forward together and we believe and look many representatives in congress told us

[00:35:49] you guys need a collective voice you know you're not going to get anything until you do

[00:35:53] so we are just an additive the epilepsy's action network is an additive we hope that we can move

[00:35:58] the needle and bring awareness and make some really positive changes so you know like I don't

[00:36:04] have to worry about my kid waking up every morning you know and all the children out there

[00:36:09] they're being diagnosed with epilepsy you know maybe they have a chance of a real future um

[00:36:14] and and that's our goal well thanks to Eileen for letting everyone know how they can take

[00:36:18] advantage of scott if they have a big idea I mean really that's not really important yeah

[00:36:25] exactly that's a good thing to know and you know and I also will say that you know I'm not in the

[00:36:30] political space but we've learned so much about we we've been on Capitol Hill we've had briefings

[00:36:36] and stories and meetings with other task force members who are on the epilepsy action network

[00:36:43] task force with us and hearing other voices and building these caucuses and and having so many

[00:36:49] people really listen and care and showing compassion I mean it's really it's really a beautiful thing

[00:36:56] we've built relationships with so many different agencies because I think what people forget to

[00:37:01] is like epilepsy affects it impacts everyone across all ages and stages and backgrounds

[00:37:09] and socioeconomic you know places and and so you know it's we need we need to to build trust

[00:37:18] amongst people we need people to hear the stories and you know we have some really big goals but

[00:37:24] we're on our way there and we're really excited about it so we if one thing people listeners

[00:37:29] can take away I mean of course you got to go to Main Street Connect.org and the Deener School.org

[00:37:35] and the epilepsy's action network.org I'm assuming that's the website I don't even know

[00:37:40] but what we really want people to do is you know contact your local representatives and let them

[00:37:46] know that you you're you or your child or a family member or you care about this issue

[00:37:51] and we and you want them on this epilepsy caucus. Yeah and and I want to add to that that

[00:37:57] you know that one of the really the most enlightening things for me personally anyway

[00:38:02] is that this is a bipartisan issue as Jillian said the epilepsy's impact everybody but the support

[00:38:09] that we are getting at on Congress and from staff members and others it's on both sides

[00:38:16] it's Democrats and the Republicans and it's a really nice thing to see that that there is a

[00:38:22] everybody's nodding favorably it's slow and it's not going to happen overnight but but there's

[00:38:28] there's this kind of connectivity that that gives you a hope within a hope that that there's

[00:38:34] that there is some commonalities amongst all of us that when we all come together

[00:38:40] we can solve really really big problem and look the the easy part on Congress is giving money

[00:38:46] because that's just giving money from there the all the clinicians and the researchers

[00:38:52] and the caregivers that's where that's where the national plan for the epilepsy really starts

[00:38:58] and and really starts to move the needle for not just here in this country but around the world

[00:39:03] so but it but it's been a really wonderful thing to see everybody kind of coming together

[00:39:09] and and and nodding favorably that that yeah we we need to make a difference and and we

[00:39:14] together can do it so it's it's it's been a nice experience so far really it's really

[00:39:19] it's time man it is time it is time to jump on board this train because we are moving amen yeah

[00:39:25] we are going to make a difference and and really really smart too to just take advantage of the

[00:39:30] playbook right from Parkinson's and ALS 100 right it's the only way it's going to get across

[00:39:35] the finish line and people telling their stories about the level of this chronic stress and

[00:39:40] vigilance that one the whole entire family lives like you said under these circumstances

[00:39:45] when you mentioned encouraging people to write their congressman and their state representatives

[00:39:50] do you happen to have like a print off like template people can use from your website where

[00:39:55] they can plug in their own name and state and not have to think about writing it right like don't

[00:40:03] you think you could get 100 percent more input from families if they didn't have to do the

[00:40:07] work yeah and if they could just be 100 boom boom send it off yeah yeah and guess what I

[00:40:13] imagine the first second that Eileen Miller listens to this it's already gonna awesome okay

[00:40:18] printable PDF coming soon hopefully we'll have a link in the show notes by then yeah I think that's a

[00:40:24] great suggestion and and yeah it will make a big difference for sure yeah well I really appreciate

[00:40:29] all this policy work it's hard for me to stomach bureaucracy but I know how important it is and

[00:40:33] I really appreciate it because I know it's like moving at a glacial pace but it's so important

[00:40:38] that we all get loud and work together around this yeah okay well I guess like give me some advice

[00:40:44] for families you know who are facing similar challenges who feel like there's no way I can do

[00:40:49] anything there's no way I can even like get up in the morning and not even just completely be

[00:40:53] surrounded by caregiving duties like how can those people who are sort of in the trenches

[00:40:58] who feel a little hopeless and maybe don't even have an idea either of what's causing their

[00:41:02] loved ones epilepsy like what advice would you give that family I don't know that I have advice

[00:41:08] necessarily to give I think I would just want them to know that we see them and we hear them

[00:41:17] and we feel their pain and that there are people out there that you know want to help you through

[00:41:27] and that are praying for you and I hope they feel the love and I hope they they feel the hope

[00:41:34] because I think we all need hope especially those in the trenches that are doing this day-to-day this

[00:41:38] really hard work a real label or labor of love and we are going to do this so it may take a bit

[00:41:47] but see the light and feel the hope and feel the love how about you Scott love hope

[00:41:53] stay positive you know try to see beyond the moment in that that you know there will be a brighter day

[00:42:01] even though some days are dark they are but but they are not alone and you know we'll you know

[00:42:10] we're all there for each other to kind of to work work our way through these kinds of things

[00:42:15] I love so much of what both of you answered in the quote-unquote advice because you

[00:42:20] really really profound profound small things that bring immense relief to families who are

[00:42:27] going through it so thank you okay anything that you're excited about for the near future slash

[00:42:33] how can people show up and contribute you know I think what what what I'm most hopeful in the

[00:42:37] near term and even look we're things at Main Street are fantastic and it's going great and

[00:42:43] and we're exploring doing some other you know some others potentially and that's exciting

[00:42:48] I think on the epilepsy action network I'm really really excited about the team that we built

[00:42:55] already we have some some great professionals that are that are guiding us through this this

[00:43:00] advocacy stuff and I'm excited about the team that is to come because because it because

[00:43:06] people are joining and really putting their money where their mouths are their expertise

[00:43:10] where their mouths are and it matters I am really really excited about that

[00:43:16] and I don't know maybe it's because it's spring and it's a it's that things are blooming I'm looking

[00:43:21] out the window right now at a tree in our front yard that's looks great so you know I'm very hopeful

[00:43:28] about that the things that are to come um in the in the epilepsy uh in the epilepsy's work so

[00:43:35] excited about that I guess that's what I'm most excited about coming up awesome well I'm obsessed

[00:43:41] with both of you and I'm so grateful for you thank you so much for everything that you've done

[00:43:47] thank you Effie and we're so grateful to be we're so grateful to have our voices shared and we're

[00:43:53] so grateful that you share so many voices and we love listening so keep doing what you're doing

[00:43:59] congratulations on all the success it's really impactful it really matters so keep it up yeah

[00:44:05] oh man okay well cheers two five o'clock thank you cheers okay thank you so much thanks for everything

[00:44:12] bye bye I hope you've been enjoying this podcast if you like what you hear please share this show

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[00:44:40] listening to the show and for supporting me along the way I appreciate y'all so much I don't know

[00:44:45] what kind of day you're having but if you need a little pick me up Ford's got you

[00:45:04] um