The Glow Up - Fabulous conversations with innovative minds.

Leveraging a Career in Product Innovation to Change the Game for Families with Rare Diseases - Ashley Hamic

• Nathan C Bowser • Season 1 • Episode 14

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Ashley Hamic, a rare disease mom and advocate, is the founder of Wish Ware Accessories, a company dedicated to creating innovative, adaptable, and personalized accessories for families with rare diseases. Here are the key takeaways from her conversation:

  • Personal Origin Story: Ashley's journey began with her son Maddox's diagnosis of CTNNB1 syndrome, a rare condition that affects his physical, emotional, and mental abilities. This led her to create customized solutions to address his specific needs.
  • Community Engagement: Ashley connected with other families in the CTNNB1 community, particularly through Effie Parks, who requested a wheelchair-friendly blanket for her son Ford. This collaboration sparked the development of various accessories tailored to the needs of children with disabilities.
  • Innovative Products: Wish Ware Accessories includes items like waterproof blankets with straps to secure them in place, sensory books, and adaptive clothing such as swift-change t-shirts designed for children with tracheotomy tubes. These products aim to provide comfort, individuality, and practical solutions for daily challenges.
  • Background in High Tech: Ashley's 18-year career in high tech, including roles in auditing, engineering, and operations management at companies like Cisco, has equipped her with valuable skills in product development, user experience, and iterative design.
  • Iterative Design Process: Ashley emphasizes the importance of direct feedback from the community. She works closely with parents to understand their needs, creates prototypes, and iterates based on feedback to ensure the final products meet their requirements.

Key Takeaways:

  • Addressing Rare Disease Needs: Wish Ware Accessories focuses on solving daily challenges faced by families with rare diseases through customized and adaptable products.
  • Community-Driven Design: The company's products are developed in close collaboration with the community, ensuring they meet specific needs and provide individuality.
  • High Tech Background: Ashley's experience in high tech has been instrumental in her approach to product development and user experience.
  • Impact on Quality of Life: The accessories aim to provide comfort, agency, and the ability for children with disabilities to feel more like their peers.


About Ashley Hamic, Founder, Wish Wear Accessories

Ashley Hamic is the founder of Wish Wear Accessories creating innovative, fun, and functional products for children with disabilities. When her son Maddox was diagnosed with CTNNB1, a rare genetic disorder, Ashley began a mission to support families facing similar challenges. Wish Wear Accessories helps make everyday life a little easier with custom-made waterproof wheelchair accessories and other adaptable products that allow children to express their individuality. Ashley’s journey as a rare disease mom and her commitment to inclusion have shaped Wish Wear Accessories into a brand with empathy and community connection at its heart.

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Ashley Hamic:

That's the thing is like, okay, so I've been in the rare disease space for nine years. I'm no longer working at Cisco anymore, so now this is my full focus. And I've really jumped in the deep end. And I'm really starting to understand the families. that need my help. Like, what are their needs? And what are their challenges? And how are they living their day to day life? And what is the quality of their life? And can I improve it? And it's been a really cool experience. These people are remarkable, amazing, wonderful people, and they deserve to have what everybody else has. And so I'm trying to make that a reality.

Nathan C:

That's gonna go right at the front. That was awesome, I'm glad we kept up with it. Well, Ashley, it has been such a pleasure chatting with you today. I am so thrilled to have learned about Wish Ware Welcome to The Glow Up, fabulous conversations with innovative minds. I'm Nathan C and today I'm talking with Ashley Hamic of Wish Ware Accessories. Ashley, I'm so glad to meet you and have this conversation. Thanks for joining me on The Glow Up today.

Ashley Hamic:

so much for having me. I'm excited to share my story.

Nathan C:

Oh my gosh. Well, Let's get into it. Can you, tell me a little bit about who you are and briefly describe the problem space that you're working in?

Ashley Hamic:

Yeah, so Hamic and I am a rare mom and advocate. My son Maddox, who will be nine next week while we're in Disneyland, he was diagnosed with CTNNB1 syndrome in 2021, which is an ultra rare And it prevents his body from creating bea catenin, which is a protein that all of your cells need to do their thing. And with that comes a lot of, physical and emotional and mental, disabilities where he's not able to use his body like the rest of the world. He also has, a lot of emotional dysregulation. And so, that kind of started this journey, engaging with the CTNN B1 community. So I'm a sewist, so I sew all kinds of things. Quilts, bears. You name it, I sew it. I also do embroidery, all kinds of things. And my son got really involved in storytelling, from a very young age. So I was always personalizing things with his favorite character. Or I was making him weighted items to wear because that helped with his emotional regulation. I made him sensory books. fabric books so he couldn't rip them and so it gave him the sensory input he needed in his hand and then his ears and he could chew on them. So he got all of his sensory needs from these crinkle paper books. And then I started sharing them on my Instagram and one of my fellow CTNN B1 moms, Effie Parks, reached out to me and asked me if I could make a wheelchair friendly Blanket for her son, Ford. And she told me, I'll give you a million billion dollars if you can make a waterproof, which I knew I could because I had previously made a raincoat. so, challenge accepted, and I reached out to Effie, tried to understand kind of what were her pain points, why were regular blankets not working for Ford, was there anything else on the market that could potentially work for Ford, and we decided no, and so I was going to make something for him. I went to the drawing board, got out my, trusty notepad, started doodling, coming up with different elements that I could build into this blanket that would make it work for Ford, because his body is ever moving. So, that was kind of the start of it and I created this blanket for Effie. It has, it's waterproof on the outside, it's lined with flannel, there's a pocket for Ford's hands on the inside to keep his hands warm, there's also straps that go around his calves and his torso to hold the blanket in place. There's also straps that go up around his wheelchair. seat handles so that it stays up above his chest so as he moves it doesn't fall down and then it doesn't drag on the ground. Effie is actually a podcast host herself. She does the Once Upon a Gene podcast. She's fantastic, just absolutely phenomenal. And she posted this blanket on her social media and I got a lot of interest for it and people started reaching out to me requesting their own blankets and so I started in the process of Building these accessories for people who also had kids in wheelchairs with specific needs. And then from there, we started, I'm in my prototyping era, if you will, trying to expand the portfolio. Like, what else could I make for this community of rare disease families to kind of, Solve some of their daily challenges in their day to day lives. Effie is really amazing at pairing me with people in the community that she knows needs a little bit of assistance or there are not things on the market that these folks could use for their children. Most recently, for one of my rare disease moms, her daughter uses the tracheotomy tube, and so she has some challenges getting her daughter dressed, because the shirts have to go over her daughter's head, which means she has to, Take off the trach tube, which then her daughter's not getting air, right? Problem. so what I created for her was a swift change t shirt, I basically put Velcro down an entire side of a t shirt so that she can easily get it on and off. And I've gotten rave reviews for it. so that's kind of how, I've been building out my portfolio. I'm getting paired with these parents who have these specific needs, and then they tell me what's going on or different things that they need addressed with accessories, and I build them out.

Nathan C:

Oh, I have so many questions. what a fantastic origin story. Okay. I gotta know about your background because what I hear. so far in your journey is that you were acting as both a parent and a caretaker and an educator, and you saw some immediate needs, right? Which is the classic founder story, right? Notice is a problem in the world. Nobody's solving it. Well, I, I, I can do it. so I, I'm loving this, but what, what you're starting to describe in building out this catalog of accessories and clothing and, you know, adaptable clothing, customized, Is, is almost like, a UX designer or like a product designer, you know, going out there, researching, connecting with the community, building prototypes, learning. So, where, what, tell me a little bit about your background, before you're an entrepreneur and, how you came to these ideas, came to this process is as a new entrepreneur.

Ashley Hamic:

Yeah, so I'll go way back from when I was in high school. I was sewing with my grandma. My grandma's the one that taught me how to sew. And for my prom dresses, I was like, how do I elevate my sense of style? How do I make this show stopping? So I worked with my grandma and we built all of my prom dresses and we put lights in them. So I think this comes from like, deep within, it's just who I am to be innovative and to try to push the boundaries and take it to the next level and how do I make this individualized and that's a lot of what I wanted to do with Wish Ware was make it so that these kids could individualize their lives because The accessibility, the accessible and the, adaptable things that are on the market are red, black, blue, and maybe pink. Maybe. And so with Wish Ware accessories, I wanted them to have the target one run and done experience where, like, you could go in and you could pick something with your favorite character on it. Or, like, for Ford, he likes planets. All his stuff is planet, with planets on it, or has planet prints on it, or it's embroidered with planets. I have another kid that I made a poncho for who loves dogs, so I made his with dog material. That way when they wear it, they have a sense of individuality and it's cool and it's fun and they want to wear it. And it's also meeting the needs of, hey I have this mobility device that I'm using that prevents me from wearing regular ponchos because they ride up my back, so I made a backless one so he can still use it and it works for him in his wheelchair, but also it's a fun print and he's a kid and that's great. And so that's like one of my passions for Wish Ware. my training, in corporate America. It, I was in high tech for 18 years. I started off as an auditor, which totally does not trend for me, but I do love the puzzle piecing of it. I love the, what are the rules? What are we actually doing, and how do we mesh those so that we. Keep it moving, keep it fresh. but then I very quickly went into engineering, which I absolutely loved. I absolutely loved being with the engineers. I love sitting there and developing systems and tools with them. I love real time testing. I love rolling it out. I love teaching everybody how to use the tools. So I did that for a few years, I was actually recruited to a CTO team by my dear friend Elizabeth Bieniek, and we built a WebEx hologram, from the ground up. So Elizabeth came up with the concept. She recruited me as her operations manager, so I was basically the behind the scenes grease on the wheels, know what everybody needs before they know they need it, and make sure that they have it in time. and building out this system so that it's user friendly for the end user. So what I love about my perspective is I'm not an engineer by trade. I love the engineering space. I love the building. I love the customization of everything. I love that we can solve world problems with it. I love that it's very creative. And I love that we can change it in the fly by just typing some code. And when I say just typing some code, I mean, I'm not doing that. I meant my amazing engineers were doing that. But I was standing there going, Hey, could you make it so the letters are bigger? Could you make it so that it's blue? Could you make it so that when I come into the room, it could recognize me as a user? Could you make it so, and so coming up with these ideas, what if we had a room system, or what, what if this, what, I'm always about the like, what ifs, like I want to see what could we actually do with this, right, like I'm just a super creative mind, and so as part of WebEx Hologram, I'm I got introduced to this whole, business process of coming up with a concept, building it, reiterating on it until it meets the needs of our customers. And what I learned through working at Cisco is, as the engineer, which I technically would be in this space, don't wait till the last minute to ask your customers what they need. Don't wait to think, oh, I know what they're living. I don't know what you're living. And I think that's one of the cool things about being in the rare disease space. As I meet these families, I realize These are the most resilient and resourceful people literally on the planet. Like, they are doing all the creative things to live their day to day. And I want to make that easier for them. So I go to them and I say, tell me about your experience. How might I solve an issue for you? I'm hearing you might need a little bit of assistance, right? Hearing you Need an accessory that might make your life a little bit easier. And your child's life a little bit funner. and so working with them through the iterative process, it means that the first prototype that goes out the door is like 85 percent of the way there. And then it gives me feedback on it. And then I reiterate, Build them a new one and send it out. And then I'm usually 95 percent of the way there. And so it's not a super long process to get from me dreaming up the accessory that they need based on the needs that they've communicated with me to getting them the final product in their hands, using it day to day to kind of meet their needs, make their days so much fun and brighter.

Nathan C:

Actually, I was expecting I would get goosebumps, in this conversation. I did not expect it was going to be on your product process section. shout out to Elizabeth Bieniek and what an amazing place, working to build, basically like a tech startup within a mega company. global corporation like Cisco and to have that front row perspective in, the collaboration, the communication, the operational side that really goes into building it.

Ashley Hamic:

So, I have one more thing to Okay, so, as part of my WebEx Hologram journey, in my What Ifs, I was, we were at an off site, and I was sitting with our CTO, and I said, Hey, what if, we could have the system recognize who comes through the door and map their skin color, their hair color, the texture of their hair, what they're wearing. To what the best holographic experience would be. And then we have the background auto adjust to meet that need. And he said, Ashley, you just got yourself a patent. And I did. So I actually am a patent holder as well. In all of my creative, what ifs, what ifs, what ifs kind of pushing my engineers, like what could we do to make it more user friendly? What could we do to make it the best experience for the end user? Because these are not technical people. These are business people that want to come in and have this real time holographic. Meeting, how can I make it the easiest for them to experience? technology patent holder at Okay.

Nathan C:

in the world. You know, the percentage of, publicly traded companies, et cetera. women are always having to. Assert their reason, their validity for being at the table. And what better way to show up to a room full of any kind of engineers or technologists or VC and be like, these ideas are patentable, they're groundbreaking, they're iterative. And I learned from the best, thank you for adding that. I'm, I'm having to like, re adjust a little bit of my perspective, if I'm being honest. we started this conversation with being a sewist who was solving, some personal, problems starting to engage in a community. And all of a sudden we sort of peeled back, this deep product insight and wisdom that's driving, this sort of, innovation and really leveraging the product development, that research, those core skills that you saw could build things, for giant tech companies, you're now making it for individuals, for very specific audiences And you're not only innovators, like, you're providing comfort, you're providing agency, you're providing, you know, like, literally, the ability to be at choice, when often, you know, rare diseases and, physical disabilities can feel so limiting. Right? Like, how many jacket options do you have if you're in a wheelchair? Well, it's probably a poncho, and it's probably yellow. Right? Like,

Ashley Hamic:

the, yeah, thing, it's, there's the, it's such limited. Choices that do not provide individuality to the users. and and when the users are children, I think that's really important because kids are means, right? And so when you're already showing up with a physical disability, they're already looking, they're already questioning, they're already, you know. Judging, if you will, it's not the most inclusive space to be in, but if you give these kids accessories that have their favorite things on them, that can be a conversation starter, right? So, it's like, oh, you like, then you'll get the kids, oh, you like dogs too? I have a dog. And then that gives them something to jump off. for conversation and to start building those meaningful relationships. I'm trying to give these kids a way to feel more like kids and they fit in. But I also want them to be warm and I want them to be dry and I want them to be comfortable and I, you know, I don't want them to have these things that don't make them feel good inside. Right, there's a whole beauty industry of making women feel beautiful and making people feel beautiful so that they can be their best selves when they step out into the world. I think the disability community should also have that.

Nathan C:

Food, shelter, clothing, you know, are those, those basic, you know, human needs and, play so much into our ability to engage in community and feel belonging. So, Coming from high tech sort of corporate values into a more community approach, into you know, this prototyping phase where you're, you're really in the trenches, kind of doing one to one work. I'm curious, how do you measure the impact of your work? And, what do you see is the next phase, after the prototyping phase, or it, will you always be in prototyping?

Ashley Hamic:

So, for your first question, how I measure my work, if I have made one family's life a little bit more fun, a little bit easier, and a lot more comfortable. That is success for me. One and I have received multiple messages from my prototypes that say this is so, so helpful. for a rare disease mom to type so, so twice, that's a big deal because she doesn't have any time. Right? So, for me, I got that message and I was cheering from the rooftops. I called all my friends. I was like, you guys, I made the SwiftChange t-shirt I delivered it to the mom and she wrote, this is so, so helpful. And so, for me That's success. you know, I follow all these rare moms on, the socials, so I see them when they're out with their kids, and when they start posting pictures of their kids using my accessories, success. So absolutely, hands down, that is success to me. Are these kids out there, are they comfortable? Are they styling and profiling? If they are, that's success for me. I, for your second question, I think I will always be in prototype phase because everybody faces such unique challenges that I want to make sure that the community feels seen and heard and supported. And so, if somebody reaches out to me and says, I'm facing this issue, I would really love a pair of pants that would enable me to put it together. AFO braces on my son's feet. I'm going to do that. I'm going to make it like yesterday. And I get so excited when people come to me with new requests. Like I literally can't. Wait to get to my drawing pad, draw it all out and say, Hey, what do you think about this? Hey, what do you think about this? We have these options. How do you feel about closures? Do you like metal? Do you like Velcro? You know, do you like snaps or whatever it is and start getting that going? Because I think the innovation part of the program is my favorite. And as I start finalizing designs, where I would like to go next is I would really like to get manufacturing on board so that I can scale and get these things into the hands of more people. so right now I make everything in house. I hand make it custom ordered based on your kids specifications. I would like to get it to be a little bit more standard, which I'm starting to standardize, sizing, especially for the ponchos and the blankets. and then I would like to hand that off to manufacturing so they could produce it with fun, you know, fun prints, and I can offer a wider variety of these things. this is my mascot, Wish the Rare Dezebra, so I would love to turn her into a children's book series. And so my thought is Wish the Rare Dezebra will go meet other Rare Dezebra friends and help them share their stories, and it will start to build a bigger community of inclusion. And these are books that, you know, kids obviously would read their children's book series, but we could take them to the schools and the schools can use that to explain to classes about inclusion and diversity for kids with disabilities.

Nathan C:

there's this interesting tension, in the communities that you work in, where. rare diseases, right, by nature, not very well studied, not very well known, you know, hard to find details. And in many cases, it's the parents, it's the caregivers, it's the families, who are really sort of tasked with understanding and discovering what works and doesn't work for their kids. And, and, right, like, have had to, Create networks and other support systems that don't exist in, like, official medicine in the healthcare system, because either it's too expensive, there's not enough to study it, there's not a rockstar doctor who's going to take it on as a passion,

Ashley Hamic:

this.

Nathan C:

carefully, like intentionally created community, of people and these smaller spaces. and my suspicion is word travels, right? Like once somebody has a positive experience. but when you're talking about bringing manufacturing on, up leveling, production how do you see continuing to stay connected and Make connections with these small niche audiences as you're also growing to be more accessible. how do you, as you're growing and building up capacity, how do you keep that connection to community?

Ashley Hamic:

So, I am part of the community. That's the beauty of it is I have access to the community because I'm a caregiver within the community and my son will always be in the community. So, a lot of these rare diseases have patient advocacy groups and they're all friends. And I just learned this last week because I went to the Global Genes Weekend Rare Conference. which was one of the most emotional and wonderful experiences that I've had as a rare disease parent so far. I've met, like, the most amazing advocates and just absolute powerhouses. And so they, get together at these conferences. And they talk, and we share resources, and so I leverage my patient advocacy group that's called, CTNNB1 Connecting Cure. and then we also are very lucky to have the Once Upon a Gene podcast, where Effie shares, you know, stories of families that are, have kids with disabilities or have rare diseases. She also, shares resources. and kind of keeps the community together. But between these conferences and the patient advocacy groups, and then, folks like Effie who do this Once Upon a Dream podcast, we're kind of all aligned and we're all connected in like a really cool way because we're the only ones of our type. So that's how I plan to do it. Just continue to be part of the community, continue to show up, continue to advocate.

Nathan C:

I want to give space to this thing that you said, right? Which is, we're one of a kind. We are unique. And, One of the challenges that founders often encounter is like, is my mission, is my dream, worth it? Am I good enough to do it? because of this deep personal connection, to being there for your son, to helping other parents, caregivers, advocates, you know that this voice is necessary because there is nobody like you and you know that you are the one who is most ready to tackle the problem. Like, how cool, even though how daunting, a new journey, to just know that Not daunting.

Ashley Hamic:

because for me, for me, this is a community sport, right? I'm not at this alone. I have this gift that I can use my hands to make these things. But we're all in this together, right? And so, I don't feel alone. And if I feel, I have, oh, I also have an amazing sewing community behind me, and my husband is an unpaid employee, and so when things get a little bit more complex than I can handle in my sewing room, I take it straight to Ryan, and I say, okay, babe, this is what we need. Effie has now asked for bumpers for Ford's wheelchair. You're up. Or he'll walk into my sewing room and go, hey, what are you doing? And I say, oh, I'm making a tracheotomy tube holder, for Jordan. And it has to be long enough because it needs to hold the weight of the trach tube off of her neck when she's laying in bed. And he's like, oh, you should try this and you should try this and you should try this. And it turns out his design was the winner. Because I made multiple designs of this trach tube, Ryan's design was the winner. So, I have this amazing support system in both the rare disease space and in the sewing space, so if it ever becomes too much just for me to handle, I just tag people in. am not afraid to ask for help, I am not afraid to ask for support, I am not afraid to say, okay, I don't quite understand what you're saying, can you show me? Would you mind sending me a picture, maybe a video? And the rare disease space, they're so willing, they're like, yes, if you can help me solve this problem, I'll send you anything you want. It just becomes such a really cool community based thing that we're all doing together and when they're working with me and I'm working with them, it just makes the process so fun and exciting and the end result is always so beneficial to the kid. I don't find it daunting at all.

Nathan C:

Okay. Ashley, you are officially challenging, some of my work. Okay. Some of my, presumptions, about the conversations I should be having. So I really appreciate that. And, what a valuable perspective, to bring to a conversation about, innovation, right? Like, you can be completely disruptive, fill a need, and have such a personal connection. amazing. So let's look in the future. you're the most qualified person to be bringing this idea and you have the team to support you. Success is eminent. What is the big glow up in the next six months to a year that you're looking to accomplish for the work that you're doing and the community that you're doing it for?

Ashley Hamic:

Yeah, sure. So I would love to get these products into more hands. I would like to get the word out about which were accessories in our existence. And then I would also like to write my children's book series, at least the first one, at least with his story, which is based on CTNN B1.

Nathan C:

We always try to make room for a specific call out or a call to action. Is there anything that you're looking for now in terms of learning, mentorship? Funding, mentors, networking.

Ashley Hamic:

So right now, I would love everybody to follow me on the socials so you can see what I'm up to. And

Nathan C:

are they?

Ashley Hamic:

Okay, so on Instagram, it's at Wish Ware Accessories. I'm also on Facebook at Wish Ware Accessories and LinkedIn, also Wish Ware Accessories.

Nathan C:

Amazing.

Ashley Hamic:

And then if anybody out there knows how to start the whole process around manufacturing, I would love some mentorship on that because it feels very daunting to me. It is a space I've never played in and I don't quite understand how it works, so I would love some help with that. it's been one of my hiccups so far in building out this brand.

Nathan C:

I love it. like an elite founder, very concise and targeted ask. I may have some, I have too many ideas that I will absolutely share with you later. was there an organization that you wanted to, give a little bit of a spotlight to?

Ashley Hamic:

I would love to spotlight the Once Upon a Gene podcast. Effie Parks is the host and she shares stories of families with kids that have disabilities as well as rare disease families. Not only does she share the family stories, but she also shares a ton of resources that can be utilized within the rare disease space. She has doctors on, and therapists on, and all kinds of different people, and she shares a ton of different resources. her passion is self care, which I love, because it's something that us caregivers forget a lot about. so give Effie a listen, the Once Upon a Gene podcast,

Nathan C:

Amazing. Well, we'll find it. We can put a link, right up there.

Ashley Hamic:

It's Effie, It's once Upon a Gene, which I think that's how you look for it on the podcast sites, but her website is effieparks. com.

Nathan C:

Well, Ashley, I am just floored, by your focus, your many, interests and this, outstanding, connection, with your customer base and this audience. Thank you. Really kind of elite perspective on getting product out into the world, testing and learning. how can people follow up with you if they want to learn more? Where can we find you at events around the world? Where do you got your socials? how can people, connect with you if they want to?

Ashley Hamic:

So, I will be at the Global Genes Weekend Rare next year. And then you can check me out on my website, www.WishWareaccessories. com.

Nathan C:

Amazing. I have had such a good time talking with you. You brought up all of these ideas that made me want to totally customize the interview to you and, I hope I didn't throw you off on

Ashley Hamic:

No, not at all. Okay, so I was so nervous about this because I've never done it before. But then I was like, no, I'm super excited to share this. And because it's my baby, like it should be super easy to share, which it was. And thank you for that. This feels like such a safe space. Yeah, this has been awesome.

Nathan C:

did we get to everything that you were hoping to share? That was one of the other questions.

Ashley Hamic:

I shared some of my products. So if somebody is listening to this and they're like, Oh, I have a need, they'll slide into my DMs.

Nathan C:

Amazing. I think this is the first podcast that I have had, where one of the calls to action is like, if you need help figuring out adaptive clothing and accessories, and if you're caring for somebody who could be a little more comfortable. give Ashley a call, now I'm, super inspired to see how many families I can get this episode in front I can't wait to connect with you again soon. Such an inspiring conversation.

Ashley Hamic:

you do a down the road, innovation. in the future. Come back and we'll talk about it some more because I'm gonna be in Target.