Journey Through Disability w/ Heather Wolf | Episode # 25

Episode 25

In this episode, Brey chats with Heather Wolf. Heather shares her personal experiences living with retinitis pigmentosa (RP) and deafness. She discusses her journey of being diagnosed with RP in college and the challenges she faced due to progressive vision and hearing loss.

Heather explains her college experience and the accommodations she received. Despite facing social challenges due to her disabilities, Heather pursued a major in special education but later reconsidered due to the increasing difficulties. Heather also shares her experience learning Braille.

Overall, the episode highlights Heather's journey living with multiple disabilities, the importance of accessibility and support services, and her ongoing efforts to adapt and thrive despite the challenges she faces.

  • 00:00:00

    Luisa: Well, welcome everyone to another captivating episode up through our Eyes podcast. Brought to you by the Pediatric Retinal Research Foundation. I'm your host, Luisa Recchia, and I'm joined by my fantastic colleague and co-host, Brianna Willett. In each episode, we explore the inspiring stories, innovation, breakthroughs and the unwavering spirit of individuals and families who face the challenges of retinal diseases head on.

    We'll dive into the world of research, cutting edge technologies and the compassionate hearts of the people who make it all possible.

    But before we embark on today's compelling adventure, let's take a moment to thank our incredible sponsors at the Pediatric Retinal Research Foundation. They are the driving force behind our mission to spread awareness, foster hope, and shed light on the invaluable work happening in the field of pediatric retinal research. Together, we strive to make a brighter, clearer future for children in families affected by retinal diseases. Today, we welcome Heather Wolf. Breyanna, please take a moment to introduce our guest.

    00:01:07

    Brey: Awesome. So, first of all, thank you so much, Heather, for, you know, coming on to our show and telling us a little bit about your story. I guess if you want to start out, you know, tell us a little about yourself and you know, your disability. So we'll go from there.

    00:01:23

    Heather: Yeah, sounds great. Thank you guys so much for having me. I'm very, very excited to be here. So my name is Heather. Wolf is the public last name I use, and I'd like it changed at that point. But for privacy reasons, you won't be able to lock me up by it too much, just so everybody knows social media. Yes. Public stuff. No, but I am blind with a diagnosis of retinitis pigmentosa and I believe there may be a diagnosis in my past of some optic nerve issues, but I'm not sure yet. I don't have access to those records. And I've also got the additional disability of deafness. So I'm actually I am the recipient of bilateral cochlear implant. So my hearing is completely artificial and they think it's due to Usher syndrome, but I would need testing for that. And then I've got some standard like ADHD and anxiety cycles which seem to be very common with other disabilities. But that's about it for me.

    00:02:21

    Brey: Well, so I guess first, you know, let's focus on, you know, why we're here. So you were diagnosed with retinitis pigmentosa. What?

    00:02:29

    Heather: I finally got the diagnosis when I was in college. I want to say I was 20 or so years old when I finally got the diagnosis and they had to put me through a flash drug test, which I think is electro retina gram. They put the electrodes in your eyes or whatever, or on your head, and they put something in your eye to pry open and run the test. And it tells them how your retina is working. It helps them diagnose it. So that was, wow,

    00:02:56

    Brey: Yeah, that's no, I never heard that

    00:02:57

    Heather: They had a hard time diagnosing my condition. And as I believe all of us know it, conditions for your eyes get misdiagnosed all the time. Like you can think you've had one thing for 30 years and turn around and get a new diagnosis in a week like it. It's always strange, but I had to go to UNC-Chapel Hill for that, so maybe it's a newer technology as well. I'm not sure.

    00:03:23

    Brey: Yeah, interesting. So did you have like what led up to, I guess, your final diagnosis? Like, did you have vision loss, you know, while you were younger or was it all just kind of like, well,

    00:03:33

    Heather: it was very progressive for me. My hearing was as well, but it's very progressive. I was always somewhat low vision. I don't know exactly how low. It wasn't something that was brought to my attention. I always had to sit on top of like the blackboard in school or and wear thick glasses and stuff. So I was always poor vision, but my parents didn't really emphasize to me, hey, like, you know, you're blind. So I saw a specialist for a while and then once I was 18 and going to college and I needed accommodations, I made sure to go to a doctor who told me my acuity was definitely at the legally blind point. And after that I started working with state services that my university actually recommended me to in the first place and started to get like orientation and mobility and learn the different resources and control needs I would have as a blind person because I didn't know how to meet them or even where to start. So that was very helpful.

    00:04:31

    Bre: That's crazy that you know, an you because you obviously didn't have any sort of real accommodations in like high school and stuff like that than if you, you know, just figured out that you're technically legal.

    00:04:43

    Heather: yeah, like, my parents kept me out of the loop on a lot of it. But I had a little bit of accommodations because I don't know what kind of paperwork the school had, but like, I wasn't allowed to play baseball and P.E., for example, because I don't have peripheral vision that I could get hit in the head with the ball and that's bad. And yeah, and I was a lot and they'd always said like, no, I had to sit in the front of the class on top of the board, usually near the teacher, to be able to see in whatever that was in there and I think extended time for tests. But yeah, that was about it though I did start having a lot of trouble doing bubbles for a Scantron, and then I had two more different books, I think my last two years of school. So I had some, but it was just a very progressive journey.

    00:05:21

    Bre: Yeah, that's crazy. So I guess how was your college experience then? You know, once you were able, did you have any like sort of additional accommodations that really changed your educational career?

    00:05:37

    Heather: It definitely changed the game. It really did. I kind of fell apart near the end of my college career for other reasons, but it was super, super helpful to have access to the resources and people who knew what they were doing, like just getting a cane for the first time, a white cane and being able to walk around with that was a lot more helpful. It made me feel a lot safer. And then there were assistive technologies and softwares too like zoom the computer and do contrast, which I needed, like high contrast keyboards and CTB for magnifying stuff to read and alternate formats for my books, which was really, really helpful because at that point I couldn't read print. So it just meeting up with state services and being able to have those resources and what little bit of training I got at the time with having as much vision as I did, I didn't need as much training was definitely helpful. I mean, I definitely fell apart on certain other social aspects as we went, because missing two senses, it's hard to keep up socially and with people sometimes it just really is. So I didn't graduate. I'd love to go back and get that degree, but college was a huge turning point for me in terms of disabilities.

    00:06:55

    Brey: Yeah, and I feel like, you know, especially once you get the realization of like, okay, like your perspective really changes, you know, socially and stuff. So yeah, so if you had to go back, what would you go for? I guess what were you studying at the time?

    00:07:06

    Heather: I actually started out doing dual majored in special ed K-12 and elementary K- six with a minor in psychology. So I went in basically desiring to teach people like me, though, as I went through and my vision got worse, my hearing's already artificial by then. I actually got my second cochlear implant and had to have a revision surgery while I was in college. So it was a lot and yeah, yeah, it was so much and I was still having to learn all the different accommodations for myself and I felt like the students wouldn't end up getting the attention they needed from me. Like I couldn't give what the job needed because I was having trouble just getting what the course needed. At that point, I didn't know about a bunch of different things. That was not really due to services, providing stuff or not providing stuff, but do more to just what I'd been through to that point and not knowing who to ask and how to get things done. So I, I don't want to go back and teach anymore because I feel the same way about that. Like, I don't think the kids would be able to get the attention they actually required from me. And I pay attention to what's going on a little bit out there. I know teachers are really overworked and seriously underpaid, and I'm already underpaid. I was thinking maybe social work or something along those lines because I do like the idea of counseling and I know if you get the right master's degree in social work, you can do counseling as well. But I also find I'm often trying to build community myself, connect the community like help people find resources when they need them. I'm constantly looking for myself, so I feel like social work is kind of my jam and that would be something I would probably go back for.

    00:08:50

    Brey: Yeah, I like that's basically because I'm in school right now and that's basically what I'm going for is social work. So I definitely understand, you know, your perspective. I'm, you know, bonding because that's initially what led me to want to help other people like us, you know?

    00:09:05

    Heather: Yeah, exactly. It's like we need the help, we need the resources. I even got this idea in my head for a platform, almost like a website. It's like we need one website that's like a Wikipedia with a bulletin board with, like, a LinkedIn profile so people can find each other and all the resources and information. It's like, Why don't we have that yet? Who's putting that together?

    00:09:31

    Brey: Right? You know, it's definitely overwhelming, especially when you first start to, you know, dip your toes into different services and all of, you know, technology and software. You know, it's definitely overwhelming, you know, especially even now, You know, I'm 28 and, you know, I'm still overwhelmed with new things that are coming out. It's absolutely crazy.

    00:09:50

    Heather: It is. And every time I turn around, even just like new options for phone tech, like I'm an iPhone at this point, it's they're always adding something new and I have to find out about it from other people. It's like, really, they did this? Or you go to look for even just a national resource, like I'm going to be 34 in a month and I'm still like, I can't decide what I like better. There's the American Council for the Blind, the National Federation for the Blind, Foundation for Fighting Blindness. There's so many organizations and they all have different resources. They do different things, even if their goals are similar. So just trying to find that even just state resources because I'm working with them now and I recently had to move within my state. So things are getting transferred, but my social worker was really good. It starts with a social worker for the blind and then they can hook you up with vocational rehabilitation resources, services for the blind resources, independent living stuff. And it's all it's very scattered even over the state within the same organization because it's compartmentalized and there's not a ton of demand for people to do Braille and ONM and what have you. So sometimes the positions are vacant. You have to sit and wait for resources too. It's just crazy.

    00:11:01

    Brey: Yeah, definitely. So speaking of moving, so you recently moved. How was that experience?

    00:11:07

    Heather: That was interesting. There were some not great reasons I had. I won't delve into that. So but I mentioned it just to allude to the stress level, you know, because moving is always stressful, especially as a person with disabilities who has trouble like moving their own stuff a lot of times because some of my balance is off even and moving hundreds of miles away. It was like and I got very, very lucky because when I'm looking for a place to live, I tend to prefer what I just call more accessible, which to me means there's some kind of public transit or at least decent enough paratransit to get around. There has to be some kind of rideshare, thinks there are still places in the middle of nowhere that don't even have Uber. And it's like, come on.

    00:11:58

    Brey: Yeah, that's my town.

    00:11:59

    Heather: Yeah, it really leaves you stuck. And I like to be somewhere where there's like a store nearby and enough sidewalks where if that's a walk a little bit, it's not too bad. And I can do so. I don't like to do that too much anymore. With my hearing being what it is, it feels dangerous, but that's why I want to get ONM services and then, you know, in the apartment itself or the house or what have you, I'm staying with a friend in his condo. You want the layout to be decent enough too, and navigable and not have too much stuff all over the place and a bunch of stairs. And I got lucky. We're on the ground floor in an ADA certified place, so the doorways are wide and everything.

    Brey: That is super nice.

    00:12:37

    Heather: Yeah, it really is.

    00:12:47

    Brey: So when you were looking for a place, so are you. Where you're staying with your friend, is that like your permanent house for now or is there, is that just kind of the midpoint until you move into your new place?

    00:12:52

    Heather: We haven't fully decided yet. Like if this looks like it's going to work out more long term, then I'll probably stay here for a minute because I do know when I was looking for housing, housing in North Carolina is like just not available right now. Even if you're on a list for something. Some lists are so backlogged for HUD and Section eight, they're not even taking applications like it's ridiculous.

    00:13:21

    Brey: So yeah, that's insane. Did you have so are there services that I've never really made like a big move per se by myself, especially. So are there services that are offered like through, you know, different, I guess, associations and stuff like that for people who have disabilities and stuff.

    00:13:35

    Heather: There can be depends how you get a hold of and what they have the funding for, because it's almost all nonprofit. I know the United Way in different areas. You that I got lucky a friend of mine was able to help me move can use her minivan fit my stuff but know that the United Way sometimes can help. I contacted the local Disability Resource Center at the place where I was moving to, because it was a bigger city and if I'd been moving from here to somewhere else instead of the other way around, they probably could help provide gas cards or help me coordinate and stuff. If they had a place that deals with people with disabilities, somebody will usually know something otherwise. I know a lot of times the suggestion is whatever your personal preferences be, to check with local churches and other religious institutions, because a lot of them do like mission and charity work and they might be able to help with stuff like that. I don't think there's like one specific organization that's like, Hey, you have a disability, We will try to help you move kind of thing

    00:14:32

    Brey: that yeah, that's good to know, especially for, you know, our listeners who are possibly thinking of moving, you know, just reach out I guess and yeah, keep yourself that's really what it comes down to.

    00:14:45

    Heather: It really does. And you can contact her in D.C. and such and see if they know about any resources and stuff. They will take your number down and call you back if they find anything, because I know there’s like emergency grants and stuff. I don't know what the different qualifications for them are, but I feel like a person with a visual impairment. Considering I can't even drive myself. I feel like a snack community. We have an even harder time because you have to think of the transportation and stuff. So something like that would be, I think, even more helpful than just a gas card person, depending on how you're able to move.

    00:15:20

    Brey: Yeah, definitely. Was there anything you know, specific that, you know, I call them like blind quirks, you know, like quirky things you do because you're blind. So did you do any of those, like while you were moving to help you keep organized or anything like that?

    00:15:34

    Heather: I did a little bit or I tried to do is I just I will organize my stuff into strange ways. Like I will put all this stuff from a dresser in the same box, even if it's technically different categories just because. Okay, that's stuff. And see other. But now mostly what I try to do that I consider quirky is I try to not take other stuff apart. If I can. I try to consolidate my stuff like I you or I didn't make. I put together an organizer shelf that I keep like my make up in and I just put that into another box fully put together with all that stuff in. And so I wouldn't have to sort it out later. I think that's probably the quirkiest thing I do. Otherwise I've got a blind or, well, a Braille label or a Braille label maker, and I'll make a label and put it on a box if I feel like I need to. But I also try to just my boxes and storage items are not the same. I don't have like four or five totes in. Okay, they're different colors. I used to do that. No, I just I don't have a lot of my stuff stored in the same size box so that I know where stuff is. It looks really weird to pack. It's like playing Tetris, but I know that this box has this in it because it's this big and that one's huge. you know, it's stuff. It's it's all about the technical stuff.

    00:17:02

    Brey: But really Right. Whatever works for you, You know, that's I guess the best advice, you know, just whatever works for you.

    00:16:55

    Heather: Exactly. And learning to not care how people judge it, because I know that's been a big thing for me over time. It's like I have to do weird, different stuff and people are going to watch and just weave or do weird different stuff.

    00:17:07

    Brey: But you got to at least you can do it

    00:17:10

    Heather: exactly.

    00:17:10

    Brey: So when did you learn? Braille. It was that sort of like a newer thing, or was there something when you were younger?

    00:17:20

    Heather: I'm actually currently learning Braille. 'm using actually, this is a really good resource that I'd like to shamelessly plug and we had laid on Edu. I am using them to learn Braille accurate and I just finished the alphabet. I learned A through Z, though I did teach myself to type in braille with the braille screen input on the iPhone and then like 12 hours one week. And I was.

    Brey: That is awesome.

    Heather: Yeah. So Braille has become a game to me because I did not learn it at all when I was younger. And since it's just a code, it's like my favorite game, my blind, my nerd divergence for that and I accept it. So I'm only just learning to touch. Read more. But memorizing the positions and stuff has been easy and fun and I'm already typing with the braille keyboard sometimes, so I'm currently learning braille and I'm enjoying it.

    00:18:09

    Brey: That's awesome. Yeah, Braille is definitely, you know, I kind of dabbled in it, you know, when I was younger. But once I lost the majority of my vision when I was like 21, that's when it became like, okay, you know, I should probably try to focus a little bit more on Braille, but I can read I'm not very good at it. I'm not very fast at it. But un conjugated Braille, it's I mean,

    00:18:33

    Heather: that's yeah, grade one, that's what I'm working on now is the grade one stuff though. It's like I'm about ready to move up to grade two, please, At least for typing reasons. Although I think now we're switching instead of just grade one, Grade two, we're going grade one.

    00:18:48

    Heather: And what is a universal English Braille? They're changing it slightly, even.

    00:18:53

    Brey: really? I have no idea.

    Heather: think it's because as we make progress as a community and advocate for ourselves, there are more people who use Braille who are traveling and such. So English speaking countries actually need to have like one or else system. I think that's why they're doing that.

    00:19:10

    Brey: Yeah. Yeah. That's cool. Is Hadley a free resource or is that something that like you have to go through like Commisfion for the Blind or something?

    00:19:19

    Heather: Hadley as far as I'm aware it's free. I was able to sign up just on their website. I know they used to require your doctor's information, but they did not require that this time, or at least say you put them in touch in like give them permission to be like, Hey, yes, this person's blind. It was totally free. They do have other like workshops where you can listen and they connect to some resources to like podcast and such. If you guys reached out to them, they might actually link your stuff. I don't know, but they're free as far as I'm aware. And they recently had a fundraiser too.

    00:19:49

    Brey: Well, yeah, it's definitely something I would have to look into. You know, I've, I've heard of Hadley. When I was learning Braille the first time around. You know, I had heard of them, but I had never I guess, pursued it because, you know, you're younger, you're like, you know, it'll never happen to me.

    Heather: But yeah, and I remember wanting to a little bit, especially once I had the official legally blind diagnosis and they told me what I probably had and such. I wanted to learn Braille, but I didn't know if I'd be able to. And that's a big part of it. There are some people who spend a lot of time trying to learn Braille and just never can. It's all up to you and how it works, so I'm impressed that I can, but I was the same way. I just never bothered to put the time into it before. It's like, No, I'm busy, I'm good. I can still read things right now. Yeah, exactly.

    Yeah. Some days I don't even want to put my hearing on because it's like I'm overwhelmed. So I was like, No, I need to learn the Braille now so I can get Braille devices and not have to listen to my phone and stuff.

    00:20:44

    Brey: Right? So now the world.

    Heather: Yeah, exactly.

    00:20:47

    Brey: So what is your vision now? Have you been kind of stable since college, since you got your legally blind diagnosis or, you know, how has your vision changed?

    00:20:55

    Heather: To me, I would say it's still definitely declining. And last time I went to see the doctor, I was listening to what they were telling the nurse for the notes. And it sounds like I've got I'm showing evidence of some other stuff as well. So I think I've just got really bad eyes in general. So it's definitely still declining for me. Yeah, and they don't even really test my acuity anymore I just think we need it for paperwork. I think it's 2400 and the better eye 2600 and the worst one last time like three years back. But this last time I went they were like, yeah, Your vision is now categorized as shapes and shadows. I'm like, that's great, but blah blah. But it's definitely on progressively worse. I've got cataracts forming as well, which I know is really common in people with RPE and that makes things blurry sometimes. But they told me it wasn't like a big cataract. And in case of progress with technology advances and stuff down the line, you don't want to necessarily have them removed because scar tissue could prevent you getting implanted device at a later time or something. So I haven't touched them yet. But It definitley has gotten worse.

    Brey: Yeah. Cataract surgery is definitely something that's, you know, I had it a while ago and it's something that I definitely wish I would have held off on just because it changed a lot in my life in particular. So just thinking for. Yeah,

    00:22:22

    Heather: yeah, I've heard that from some people too. And I know somebody who, because of the cataract, they end up getting, they get the surgery to have it removed and they're still like fuzzy in that eye a little bit. But that was the only eye they had working, so they had to do it. So I know some people will do in, some people want it done. It definitely changes things and especially if you don't get like a permanent corrective lens put in to to help aid things. I think it changes what the overall result of the surgery could be, especially when you're already visually impaired.

    00:22:56

    Brey: Yeah, definitely. So kind of switching gears a little bit, I want to talk about like your social media presence. You know, you have a following. You know, is TikTok really your main platform or do you have other like Instagram and stuff?

    00:23:05

    Heather: I do use other platforms. I'm just not as active as on them as I usually am on TikTok because I like the being able to create a quick video thing or even just an audio. If you want to put a picture up, you don't want yourself on camera for that. I'm whatever I like. Tik Tok is actually my second I my last one got banned because I keep being blind right on top of the camera and then wearing like a tie and strapless thing. So they think I'm like a child who's not wearing clothes. I don't know. So I got it once and bogus strikes before and lost my first thing. Now that Tiktok's definitely been my main platform

    As much as you can find drama on social media, I kind of refused to leave it because I would not being talking to you guys without it. Like I did not have expansive blind community. I knew blind people from the last place I'd worked, but I had moved since then to like I would not have blind community anymore were it not for TikTok. So I definitely tend to favor it.

    00:24:08

    Brey: Yeah, it's crazy. You know, I you know, I've always kind of been a lurker on TikTok, and especially now with working for the foundation. You know, I, I guess I never realized how big Blind talk is. Like, it's insane.

    00:24:23

    Heather: Yeah. I've only recently realized how big it is because I feel like you get in certain circles and certain people have a presence. But I know there is one tiktoker I follow who's got like 26,000 followers and she's a blind person or a person with blindness, political correctness. But she I think there are a lot of other people in blind talk who don't know her because her followings from like cosplay and makeup. So it can also depend on what your content is like.

    My following was slightly larger on my other account at one point, but I've also not been posting as much with all the chaos going on in my life.

    00:25:09

    Brey: Yeah, but I just think it's so funny because the videos you post, you know, a lot of them are informational. You know, I when you I think it was when you got your new phone or something with a new update on with the side button and like triple tapping the side button like the power button I was like, Wow, this is such a changer.

    00:25:21

    Heather: Yeah. Or having the Yeah, you can push and hold it and use it like as an extra accessibility shortcut. Yeah. The action button. I did that with the my last account. I don't think I did on this account. I did it on the last account. So people would ask me like, how do you do this? How do you do that? And I realized I didn't know how to do these things. So once I learned I would do the screen recording. So what do you mean? Asked me, how do you do a screen recording? Like, I love being able to help fill people in and learn new tips and tricks my own self. I have a friend I go to specifically for my Mac and Apple books, right?

    00:25:55

    Brey: But it's so nice to have other people, you know, who know what you're going through and can, you know, offer those helpful, you know, tips and tricks. Yeah.

    00:26:04

    Heather: definitely. And I feel like having that is just essential for survival with any kind of disabling condition. Growing up, I was the only person I knew with anything like this and nobody knew what to do about it. So it kind of is like I didn't know what to do about it or that I was because it's like, okay, well I just have to get along. And now it's like, No, these people know exactly what I'm talking about. Whether they're 22 or 65, they're on the visually impaired spectrum. They get it.

    00:26:34

    Brey: Exactly. And I think that's one of our main goals, especially for this podcast, is, you know, the more that it's talked about, you know, it becomes reality instead of having to accommodate, you know, it's just kind of a thing.

    00:26:46

    Heather: absolutely. And I know somebody I follow on TikTok was recently talking about something they referred to as ugly laws, which were kind of trumped by the ADA. But there are these old laws where basically the way society was structured was if you had any kind of disability whatsoever, you were like kind of swept aside like a dirty little secret. And if you were out in public, you were not out by yourself, you were not doing stuff, you know you were. And it was brought up in regards to like, I think a hearing man and his hearing impaired, significant other went out and they were signing at a concert and the older crowd was just openly staring at them because like with us, like you just said, we're trying to normalize this and make it like make the population less ignorant overall by putting it out there, because we hear that was not something that used to happen. And I think that's a big part of the struggle, too, is like, as much as people had to fight for the ADA, we're still in the middle of kind of our own civil rights movement. In a way, this shifts. The gears are change, grind slowly, and accommodation is not part of the public consciousness, which is sad because it would lead to a lot more innovation. I feel like there's things that if they were thinking of solutions for people with physical and mental disabilities, technology and the population and just everything I feel like would be advanced even a little bit further. But there's a lot of resistance.

    00:28:16

    Brey: oh yeah, we're definitely moving forward. You know, we're making progress. It's slow, but at least it's moving forward, I guess.

    00:28:25

    Heather: And that's all you can say when you get the Speaker of the House that they're going, it should be a woman's duty to produce at least one able bodied worker for the workforce. It's like, God, no, no, we're fighting against it. Thank you. Stop it .

    00:28:39

    Brey: well, Luissa. So do you have any other questions while we have Heather here with us?

    00:28:44

    Luissa: Hi. Yes, Heather, That was wonderful. I was. That was wonderful. I thank you so much for sharing that. I do have a question. Where does life bring Heather today? What is Heather doing these days and how can we help you

    00:28:58

    Heather: me today , I am just trying to get settled into the new place and get all the things set up with like paratransit and services and such, which is rolling right along. I spoke with my social worker recently. Excuse me, and I'm just with me. I just need the continued support that I've had. So I'm kind of trying to set up my network. So it just helps me to be a part of this. And have you guys spread the word and try to make it easier for all of us out there and educate everybody. Like I said, it builds community and that's just so important and we all need to support each other and be able to walk through the world without having to worry about it as much.

    00:29:41

    Luissa: Yeah, wonderful. And that's what we're trying to do. And, you know, our goal was always to, you know, begin this podcast. It was about a little bit over a year ago with the whole goal to eventually, you know, bring someone in like Brey, who can be who can run with this podcast, if you will, bring people on the platform, you know, conduct interviews so that we can share this information. And in just let the world know that we are here and you know, where we'd like to work together as a community of many of us. Right?

    We do have a Facebook page. I hope you do join us on that page. We have a conference coming up in January. I'll make sure that you get an invitation to that. It'll be both in person and via Zoom. So whatever media per you. Yeah, we're going to have some wonderful guest speakers. We have a research component where the physicians will talk about where research is, where they're at with research, and we'll actually do a tour of the lab. I don't know if that will be able to be shown virtually, but maybe we can record the tour. We're still finding out fine tuning those those details, if you will. But, you know, our goal is to do just what you're doing, which you're wanting to do, which is, you know, expand share that, you know, let people know out there all the things that we have to offer because I think it takes a village really to build.

    00:31:03

    Brey: absolutely. Definitely.

    Luissa: Yeah. And, you know, you're always welcome to be a part of us. Please, you know, follow us. You've got contact with Brey, you know, reach out any time. We'd love to have you in to help support one another.

    00:31:19

    Heather: Yeah, that sounds excellent. I really love what you guys are doing, and I look forward to seeing more and what happens.

    00:31:25

    Luissa: Yeah. Is there anything else you'd like to share that we haven't asked?

    00:31:29

    Heather: And nothing I can think of specifically. Maybe just a general message. Anybody with disabilities and struggles out there to keep struggling because it it is hard, especially if you can't find somebody who you feel fully understands like and sometimes that's a good thing. Like me, I consider it a good thing. I can't find somebody who knows exactly what I'm going through because sometimes it's really horrible. Just and then not even just straight up disability wise, but if you keep struggling and keep trying to find people like open that little bit of your heart or your spirit that's still able to trust you will eventually pull through it and get to somewhere better. And you just got to hang on to that. If you can.

    00:32:13

    Brey: yeah, definitely. I definitely agree with you 100%. I couldn't have said it better myself. Ah, so where, where can people find you on Instagram and stuff like that? Heather Wolf, is that it?

    Heather: Yes, it's Heather Wolf is the name I use on there, and the username is almost always purple hue. That is the color purple. And then my initials H E W I believe Tik Tok has an underscore too, because it's a second account and all my social media has a linktree to with all my social media. So if you find me somewhere, you can find me everywhere else, you know?

    00:32:47

    Brey: Beautiful. I just want to thank you so much for coming out with us and, you know, talking to us and sharing your story. It's it was very informational and very informative and hopefully help someone else.

    00:32:58

    Heather: Yeah, you're welcome. I certainly hope it does.

    00:33:00

    Luissa: Well, thank you, Heather. And for those of you out there listening, please follow Heather on her blog. You where you can find her on it. Was that Instagram? Heather

    Heather: Instagram and Tik Tok. And I think I'm still on X

    00:33:14

    Luissa: Beautiful. That's purple hue H E W. so thank you Heather, for being here and to our listeners for joining us and I hope you enjoyed this empowering episode where there are no limits to what one can achieve with encouragement and support. A special thank you to our sponsor, the Pediatric Retinal Research Foundation, for their unwavering dedication to making a difference in the lives of those affected by retinal diseases.

    Your support truly makes these stories possible. We encourage all our listeners to stay connected with us and the foundation to continue learning, sharing and supporting the cause. Remember, it's through our collective efforts that we can create a brighter, clearer future for children and families impacted by these challenging conditions.

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    Together, we can raise awareness, inspire hope and drive change. Stay tuned for more inspiring stories and groundbreaking research on Through Our Eyes podcast. Until next time, remember that every voice, every story and every effort counts. Thank you for being a part of our mission. Goodbye for now.

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