The Roadmap to Rare
This is the Roadmap to Rare. Hosted by OCNDS parent Eric Finn, this podcast explores the reality of the rare-disease journey—sharing hope through real stories, real challenges, and research. This is our rare disease roadmap.
Every rare disease journey is different, but no family should have to navigate it alone.
On Roadmap to Rare, Eric sits down with parents, advocates, clinicians, researchers, and leaders in the rare disease community to talk about what the path really looks like—from diagnosis to advocacy, research breakthroughs, and everything in between.
Together, these conversations shine a light on the experiences that unite the rare disease community: resilience, determination, and hope for the future.
The Roadmap to Rare
Episode 7: Reflecting on Rare Disease Week ft. Alyssa Ronco & Jessica Wilfong
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In Episode 7 of Roadmap to Rare, host Eric Finn sits down with two fellow OCNDS parents, Alyssa Ronco and Jessica Wilfong, to talk about their experience at Rare Disease Week in Washington, DC. This three-day event, run by the EveryLife Foundation for Rare Diseases (now known as the RARE Foundation), brings families from across the rare disease community together to share their stories and to meet with lawmakers about policies affecting rare disease families. Alyssa and Jessica discuss their families’ roads to an OCNDS diagnosis, their experience advocating on Capitol Hill, and the impact of meeting other rare disease families in person. They also reflect on the power of showing up in numbers and how advocacy efforts—big or small—can create change.
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Rare Disease Week information: https://www.rareadvocates.org/rare-disease-week/
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Hello everybody, and thank you for joining this episode of Roadmap to Rare, our podcast where we discuss the rare disease journey through real stories, real challenges, and research. I'm your host, Eric Finn, and on today's episode, we're talking about Rare Disease Week. Every year, families from across the rare disease community travel to Washington, DC for Rare Disease Week. It's a three-day event run by the Every Life Foundation for Rare Disease that gives advocates an opportunity to sit down with lawmakers to raise awareness for a rare disease and discuss policy changes. This year I was one of the parents joined, and joining me today are two other parents of children with OCNDS who made the trip to the hill, Alyssa Ronco and Jessica Wilfong. Thank you guys for both being here.
Speaker 1Thanks for having us.
SpeakerBefore we get into the episode, um, can each of you introduce yourself and tell us a little bit more about your child and your journey getting the OCNDS diagnosis?
Speaker 2I'm Jessica. My daughter is Maci. She was diagnosed with OCNDS when she was two and a half. Um we kind of knew at a young age that Maci was just developing a little bit different than her brother was. He's older, so we kind of had that concept with him. Um we brought these concerns and challenges to our pediatrician who then immediately dropped every referral possible. So she put things into developmental pediatrics, we started to check the boxes off. Um, and then once we got to kind of that, the next steps would be the genetic testing portion. We were super hesitant. We we kind of were scared. We didn't really know what the point of a genetic test was and how it would be helpful. Um, but once we received that diagnosis, I was fully in, jumped totally in, learned as much as possible about OCNDS and building that foundation and family.
Speaker 1Yeah, our story is quite a bit different. I think Angeli just a little bit older than Maci, so it was a different trajectory since she is 14 years old this year. She just turned 14, and her name is Angeli. And um, I think our story was a little more clouded at the beginning because Angeli was born prematurely because of me. So much of her early delays and not meeting her milestones was kind of clouded by she spent time in the NICU. She was intubated. Um she had really severe acid reflux, which is very common in preemie. So once she got to about a year old, it was pretty clear that she should have, you know, caught up with her peers at that time, and we were still struggling. So we, you know, tried everything possible for what was available because she was born in 2012 and OCNDS, you know, wasn't even discovered yet for a you know a few more years. So we went through the genetic testing that was available at the time, which was a microarray, and we had her to, you know, major health systems in New Jersey, and we had her to Boston Children's Hospital, and the most advanced testing they had at the time didn't turn anything up. So, in the meantime, we moved to Pennsylvania and still followed with all of the same specialists in developmental peds and neurology, and she had all the therapies which you know most of our kids have anyway. Um, but when we went to developmental peds um and had a different provider, she had encouraged us to, you know, try again. We have more advanced testing. I have a specific doctor I want you to see. So we went to um Geisinger and we had one more um follow-up with a genetic doctor and a genetic counselor. Um, so that was vital in getting our diagnosis because if we wouldn't have gone to see them, we would still probably not know. So we ended up having that whole exome sequencing, which is so very important. And a couple of months later, we turned up with our OCNDS diagnosis, and I would say our lives changed literally overnight. It was the November of that year, and all of a sudden we had a reason. I think I cried because I just knew that there was more to her story, and we found our family, which is all of you in the the broader OCNDS community.
SpeakerThat's great. So I know we're all from different areas, like um Angeli's, you guys started in like New Jersey, pretty big uh hospitals for that. And Jessica, you guys are India Indiana, so like bigger, and we're in Wyoming, so it's just an it's interesting to hear like different spots and where it is, but yeah, I feel like we all have that moment and it depends on the age. I think Jessica, I think our our kids are close, close in age-ish. So, like, oh, it was a thing, it was a thing, and then the genetic happened, and then Alyssa, um Angeli was had what four about four, four or five-ish? And then she was diagnosed at when she was seven. Seven, okay. Like you uh had worked on the the characteristics that you see, the symptoms, right, instead of knowing the whole things there, so different parts. Um great. Well, uh, I know kind of starting from the beginning, what made you decide to get involved in Rare Disease Week?
Speaker 2I'll go ahead and go. So I think for me, it was 100% stepping outside of my comfort zone. So legislation and policy were things that like often intimidated me, right? Like I didn't really know what to expect. I really didn't have any idea if I was even the right person to do this. I had so many self-doubts walking in thinking there's gotta be somebody who knows this better than I do. There has to be somebody that's better than me at describing this because I truly I don't know. And I don't want to say that it's not for a lack of trying, it's just very confusing to me. Um but I also knew that if I wasn't willing to use my voice and our story, then the opportunity for change could potentially not be there. And so for me, I think outside of looking at the statistics and the research, I have the stories, I have the lived-in experiences, I have the actual ability to say, these are the challenges that we're experiencing, and this is what we need help with. So for me, it was more about finding out that comfort is something you have to step outside of. You really have to challenge yourself. And if I wasn't going to share my story, who would?
SpeakerTrue. Yeah, it's it's huge. I mean, we weren't writing laws, you know. Once you get there, you're like, wait, we're not gonna write them, we're just telling them what we would like. And who better than us? Alyssa?
Speaker 1Yeah, I think for me it was kind of a feeling of helplessness because we, you know, have our government and they make these laws, but how do they know what we need if we don't speak up? And we represent what seems to be a tiny portion of our population, but when you combine it all together with all of the other rare disease groups, we all have the same or similar challenges. And if we don't speak up, how will they know what we need? And it was pretty nice because it was all very much laid out in bills that already exist. Um, so our learning was fairly easy, you know, in the like a one-pager describing a particular bill and not really knowing, like I knew nothing about these bills and what they entailed, but when we see them, it's like, oh my gosh, this is something that would be life-changing. So I think for us, we just need to use our voice and ask for what we need because everyday life is already hard enough. So if we can get a little bit extra support, it's for us, it's like the world. To other people, it's tiny.
SpeakerYeah. So they they're like, well, I guess we maybe can try to do this. And be like, yeah, please, please, just give us this one thing. Us learning about it, like, oh my gosh, yeah. I feel like almost all of the ones they talked about were like, yeah, yes, all of these would be amazing. Like, I don't want to, I don't have to pick.
Speaker 1Yeah, every single bill, like you could see it fit in and how it would help our families or a huge number of our families, maybe not everybody, but a giant percentage.
SpeakerSo I know like the first days of Rare Disease Week kind of focused on learning how to tell your story and on rare disease policies. Is there anything you guys learned that stuck with you from this time about learning how to tell your story?
Speaker 1I think for me, it was the fact that we in this scenario did not have a lot of time to tell our story. So trying to figure out how to make it as concise as possible and to try to, you know, have like a one-minute version and you know, a little bit longer version. Um, that was something that I think we spent a lot of time trying to cultivate the storytelling, but also keeping it personal and you know, showing emotion and having our, you know, story really shine through.
SpeakerJessica?
Speaker 2I think, yeah, I think for me, um, I can't remember who specifically said it during the education portion, but they used a quote from Brene Brown and she said that courage is willing the willingness to show up and be vulnerable when you can't control the outcome. And so I think for me, that specific quote stuck with me the entire time we were there because we showed up. We don't know what the outcome is going to be. We we knew that we had X, you know, X amount of things we wanted to present to these lawmakers or to these lobbyists or or people that were there, but we don't know what the outcome is going to be. The only thing that we can control is our story and how much passion we put behind the story that we tell to these people because ultimately that's the only thing they hear. They already know the policies, they already know the change that they're potentially going to make, but it's our story that builds on that and helps them see from our perspective.
SpeakerYeah, I mean, we we can put the passion behind it. We can we have the story, and I know being from Wyoming, it's one of those things like there's only 500,000 of us, you know, and like bigger states, Pennsylvania, Indianapolis. I mean, I know we have some from California. We have the the the ability to tell our story, and that's really I feel like what it came, but then making it concise, but still have that punch to them as well.
Speaker 2Yeah, well, and like Alyssa said, it it was really hard to keep it very short and sweet. I mean, you you wanted to touch. I mean, when you think about only having, say, a minute, maybe two, or or potentially a little bit longer, depending on how many people you had. But I mean, one to two minutes is not enough to even begin to scratch the surface about the things that we experience and the challenges that we have on a daily basis. So it was finding those key points that were really valuable that really hit home for me.
SpeakerI feel like it's it's almost one of those, if you can find, even if it's not the whole picture, but if you can find one thing that like tugs at your own heartstrings when you talk about it, then that that passion shows up and knowing like, oh, there's just one thing this person told me about their child, and it got them to that moment. Like, there's gotta be more than just hitting all the notes at once as you go forward. But yeah. So I know on the last day, uh, we met with lawmakers to kind of advocate for rare disease policies and legislation. Um, and this year's Rare Disease Week featured four main asks for the lawmakers. Uh, one was the innovation hub, a central office for the FDA to coordinate rare disease research and develop consistent approaches for reviewing new treatments, calling on Congress to make sure the FDA utilizes readily available tools to move rare disease treatments forward, um, backing the Credit for Caring Act, which provides family caregivers with a tax credit of up to $5,000, which was a lot, I feel like, which was nice. Um, advocating for genomic answers for Children's Health Act, which ensures Medicaid coverage for genomic testing. Um, what were those meetings like with your policymakers for you? And how did you find your voice to kind of speak up for your child in that space?
Speaker 2So for me, these meetings were incredibly intimidating, right? So I obviously start, like I stated at the beginning, I had no idea what I was walking into. I really didn't even know what to expect. So when I walked into those rooms, I was, I mean, I did one of these. I was like, like, I'm sitting in this room, like with these people that hold immense amount of power. So for me, I was super intimidated. I was definitely really, really nervous. Um, I I know that I with the other Indiana people that I had um interacted with, they gave me a ton of pointers and a lot of different things, and they really just broke it down to speak from the heart and tell your story. And I think for me, after I got that first one under my belt, I was like, okay, I can I can do this. This is this is okay, this is great. And then I walked into the next one, and it was with even somebody who was higher in power, and I'm like, I can't do this anymore. Like, what what? Like, so for me, I I while it was intimidating and it was scary, it was also something that I kind of still go back to that courage is power, right? So I had to dig into that. I use that and I had to remind myself that I'm Maci's mom. I'm there for Maci, I'm there for all of us who are parents of children with OCNDS. I I understand what it's like from my perspective and as well as talking with other parents on what it's like to live and navigate life um with OCNDS or with a child with OCNDS. And so we we face challenges on a on a daily basis, even on a minute basis, right? And so being able to kind of step into that role of you know what, I can I can do this, I can tell these people what we're struggling with, and this isn't scary. And then when I the the final thing that kind of stuck with me the most was one of the um policymakers was like, wow, you deal with that every day. And I was like, Yeah, and it's not just me, it's every other parent. Because it was something very simple, it was very basic, it was just a normal behavioral challenge that I'm sure that all of us experience every single day in one way, shape, or form. And he was like, Wow, that hits. And I'm like, yes, yes, it hits hard. This is why this is important. Yeah. So that was for me. I just had to kind of step outside of that intimidation and that scariness and that nervousness and just realize that our stories are important and our lived experiences and being the voice for Maci and everybody else is what matters most.
SpeakerYeah, I was gonna say I I kind of feel like it's and I think the majority of families with kids with OCNDS have speech delays. So, like, our our job is to be the voice for the voiceless. Uh, you know, like my son, like Ronin can't like tell me what happened during the day. Hey, buddy, how was how was your day at school? Just he's already planning doing something else, so it's like, okay, well, let's ask the teacher, how do you do? Luckily enough, when he's in preschool, up until this coming year, um, the his special education teacher was right down the hall. I work in the same building as them, so they come by. Oh my gosh, Ronin did this today, and it was so funny or so cute. And I'm like, oh, I'm not gonna get those the next year or the year after, but um, it is not, but yeah, we are. We're the voice for the people that can't speak up for themselves. And I'll be the first one to say we probably have it fairly tame with our with Ronan um compared to some of the other people that have it. So like when we talk about like you said, they're like, oh my gosh, you deal with it? Like, yeah, and we're kind of a when I talk about it, we're kind of a tame case. Like, you know, we don't have a lot of the other stuff that a lot of the other people do. Like, wow, really? Like, yeah.
Speaker 2Well, and I think too, a lot of times the the policymakers and the law holders, they have this idea of what like a normal life or a normal day today looks like. And so, like you mentioned, if they're not impacted by it or they don't experience it from somebody else or or somebody that they know, they really don't know how to speak of it. They don't know what it seems like or what your day would be like. And so I think for us it was so important to be able to describe that to them, to tell them that these speech challenges are a difficulty because, like you said, you don't get to hear how your day was or how like hit their day was were at school. Because same with Maci, she comes home and I say, Hey, how hey girl, how was school today? She said, horse. And I'm like, huh, okay, yeah, great. Let's talk about horses right now. Because she doesn't make those connections, she doesn't understand that school is let's have a conversation about it. So, yeah, being that voice and being able to be heard and and share our lived experiences was huge.
Speaker 1I think um Pennsylvania was very different than what you guys might have experienced because we had the most people in any one state. There was probably like 40 some parents that were there. So in our meetings when we were prepping, we were kind of figuring out, okay, everybody's gonna introduce themselves, and you've got like literally three sentences. And then, of course, we hit the whammy where we heard from one of our senators, Senator Federman's office, that they only wanted like 10 people in the meeting. So they were trying to figure out like what was the best combination of people to represent, you know, every single type of disease or every single age population. And I was one of the parents chosen. So um, once we got there, they were very receptive and we had a good conversation, but um it was a bit of a challenge and a lot of pivoting at the last moment. Um our other senator, Senator McCormick's office, our meeting location was changed so many times because they were so accommodating and they wanted to see every parent. So we needed a huge room to be able to accommodate, you know, all of the people that were there. Um, so there was kind of strength in numbers. I felt a little bit different in that there were people there that have done this before. So it was helpful to kind of model off of what they did to be able to tell, you know, my story more effectively. And then we had two other meetings where um we met with representatives and I met with another representative that wasn't my own personal one, but they had me in a meeting with another man. Um, it was his uh representative. And then, of course, we went into my meeting with my personal representative, and it was me and like two other people and the staffer. So we got a chance to, you know, give more detail and there was a lot more back and forth, you know, questions being asked. Um, so those were very, you know, different types of meetings, but both of them, you know, were really beneficial in like trying to practice our skills because we were always encouraged that these aren't these shouldn't be a one-off. This should be, you know, to be able to create change and make a better path for our children and those coming after, we need to develop relationships with these offices. And you're not gonna just ask once and you know have all of these bills passed. We have to, you know, keep knocking on their doors, keep asking, keep scheduling meetings, um, and just kind of let them get to know you. When you call on the phone, they know exactly who you are. So I think that's the biggest take home is you know being willing to stick with this for the long haul if it is something you really want to do.
SpeakerSure. Oh, that's great. I mean, mine obviously was a lot different than both of yours. Uh there's me and one other lady um who is a grandmother of a child that had a different uh disease. So two of us to get to talk to our one representative and then our uh two senators, but um, it was kind of neat. The the representative uh was the majority whip, so we got to meet in that office, and it was just the two of us, and um the representative was just sitting there, and it was it was really interesting. He he got like a little dossier from his you know aid or whatever, and he's just opening it up. He's like, There's two of us. What else could be in there? Um, but there's a little I could see there's a little sentence about each of the kids, and he was like, Oh, so uh your son, like, oh, I'm I'm getting singled out here. Okay, cool. I mean, there's two of us, so I got a 50% chance. Uh so I actually just got to talk to him about my son and um how it was, and come to find out he's the chairman of the rare disease caucus on on the hills. I was like, wow, okay, all right. I guess the right person to kind of talk to and be able to tell a story. So even though a small state, it was really nice to like they still have some pull and being able to talk to them about it, and he was the only one. That we actually met the other two, we met staffers and talked to them about what was going on. And so it was a little different on my side just because there's not a lot of people.
Speaker 1Did your particular person have a connection with the rare disease community? Is that was there a reason he was the chair? Did you get a chance to ask?
SpeakerYeah, I think well, he's he's a doctor by trade, but like an um orthopedic doctor. So I think that the doctor side of it kind of got him like, oh hey, you're a doctor. You should be on something with, you know, that side of stuff. Um, and just kind of worked his way up to it. Um, but no, I didn't get a chance. I was like, I'm gonna, if I got like five minutes, I'm gonna tell tell what I need. And I could probably Google the rest of it, but just hadn't got around to it.
Speaker 2I think it's crazy that we all experienced an entirely different type of process when it came to you know being on the hill. Like it, it's it it's crazy to me that everything was so vastly different.
SpeakerYeah. So I know probably a lot of us came home with a moment that stuck with you. Um, was there a specific moment from your time on the hill that you'll just never forget from it?
Speaker 2I think for me it was the sheer power of numbers. Um we think of OCNDS and it's it's very rare, right? Sometimes we're the only one in our state, or there's only a few of us in our state. And so to go to something such as the hill, we're connected with other people in just the sheer fact of rare disease as a whole. And so I think that sense of connection and that sheer power of numbers was what really hit home for me. Um, I felt too like I was no longer sitting across the table from a doctor or a teacher or a friend trying to tell them the story or trying to get them to understand. I was sitting across from somebody who had that power. They they shared that sense of control essentially of what happens next. And so I think for us, or for me, it was that sheer number of all of us there. We all had one goal. It was all our ultimate goal was to show up in numbers and show that rare isn't really that rare after all. We we feel small, but when our voices are heard, we're powerful.
SpeakerYeah, I think too, it was kind of neat to like um just sit around table and I don't I don't know about you guys, but like when we start talking about like, oh, my son has this, you can normally it's a oh, wow. But those people are on the table are like, oh yeah, yeah, yep, been there, you know, like, oh, we're all part of the same team. Maybe a different, you know, the kids might have a different rare disease, but it's like, oh, yeah, they get me, okay. And like, I don't feel like I have to go into so much exposition about it. Like, oh yeah, I had we had like three MRIs last month. Like, oh, okay. And just like that, that almost ease of okay, these people know what I'm already talking about. I don't have to be that in the in the weeds talking about how we got there. Like, nah, give me the high points. I I got the rest of it. And like, oh, I feel like a little more at ease when talking about it.
Speaker 2That was 100% how it was when we sat at the Indiana table. It was almost more of the I get what you're experiencing as a caregiver. So I I get what you're feeling, that that overwhelming sense of kind of loneliness that sometimes caregivers can experience when we're managing, you know, children with rare diseases. And so it was that ability to just feel connected and know that for the three days we were on Capitol Hill, we were one giant family of rare. Yeah.
Speaker 1I think um for me, there were two things that stuck with me the most. Um the first one was in our particular meeting with Senator Fetterman's office, the sense of urgency for certain members of the rare community, where they're if they don't have action soon, they are going to deal with the loss of their child. And we also had another mother in that meeting that had already lost her child. So for them, it their stakes are very different than what we experience because we hopefully will not deal with that type of urgency. But there are other families that have either already had to lose their child, or if these things don't get done and don't get done now, that it has just the most giant impact on their family and their community. So I think those were very startling conversations and very emotional. And I am such an emotional person, and I I had trouble listening and keeping, you know, my emotions in check. Um, so that was that was a very hard point, you know, to kind of see that. But then another, you know, time that stuck with me was just being able to be with all of you guys and to be with Terri also and Amber. And we don't often times get to be together in person. We're always with a screen, and just to have, you know, that one-on-one time with you know, a small number of you, and we could compare and commiserate and you know, be like, oh my gosh, why is Maci so much like Angeli? You know, and those moments where we're like, oh my gosh, Harper did this, and you know, we're like, oh, we did that, we experienced that too. So I feel like the camaraderie of the whole experience was probably the most beautiful thing and the thing that still, you know, sticks with me. It was just such precious time with all of you.
SpeakerYeah, that was really nice. Like you said, not behind the screen, not with like having to worry about our kids or other things. It was just like, oh, let's have, let's just talk. What's going on? And even not it, and even not about our kids. Like, hey, how are you? What are you up to? Like, oh yeah, I can talk about myself too. In fact, sometimes like we get lost in the in the the shuffle of it all. And like, I know my job, I I go on home visits and talk with families that have children with developmental developmental delays, not not a disease or you know, something else that might be there. Are some, but most are just delays. But I find myself even now going, I should probably talk about them a little bit more as parents. Like, what do you do for a job? How are things?
Speaker 1Our identity is so tied with our children.
SpeakerYeah.
Speaker 2Yeah. Stepping away from having them there doesn't mean we don't love them any less, but to be able to spend just a few days without them and really learn about each other and experience and and the experiences that we have. I feel like sometimes when we're, you know, when our kiddos are there, our our eyes are constantly on our kids, or we're wondering what they're doing, or we're wondering where they're at, or you know, trying to make sure they're not running away or wandering off and doing something. And so it was kind of a breath of fresh air to be able to just sit and be in the moment.
SpeakerLike going to the hill. I know Jessica talked about like kind of stepping outside of your box, and oh, I think I'm okay with your comfort zone. Um has stepping like into advocacy and participating in events like Rare Disease Week changed you or your family's journey with OCNDS?
Speaker 2Um, yeah. So it was it's interesting because I didn't expect it to, and I'm not sure what I really was expecting or wasn't expecting. Um, it was kind of one of those that once we I I went, I I shared my story, I learned a little bit more about what's important and how we can change that, that ad that sense of advocacy kind of gave me a purpose and kind of focusing on those uncertainty things and being able to make that change. And and it's not so much even just a matter of at that gigantic level, but even more at like what at a county level. Who can I talk to here in Hendricks County in Indiana? Who can I speak to to make this change, you know, locally for our school communities for kids that experience challenges? So I felt that it kind of helped me realize that I'm I have more of an advocacy background. I mean, I am a social worker at trade, so I advocate for everybody else. I don't typically advocate for myself or I advocate for Maci 100%, but I but I mean in more of that policy role. Um, and so I think it helped me really step back a little bit and see how I can work towards making change here at at even a smaller level.
SpeakerWell, that you'll feel more day-to-day almost.
Speaker 1Yeah, I think for me it just kind of opened up a whole new level of being able to advocate. I feel like a lot of our work on, you know, the parent advisory board and all of that in our family calls is like directly supporting and you know, syncing up um ideas for our families and you know, supporting each other. But this is just like a new dimension of how we can help our community. And um, for me, it's spurred me on. So I'm like taking part in rare across America this week. So we're meeting with um with our representatives when in August when they are in their home districts. So um we started out yesterday, we had a meeting with Senator McCormick, and then next week um that was online. Next week we meet with Fetterman's office online, and then I also get to go in person to my representative Glenn Thompson's office, which is in Belfont. It's about 45 minutes from here. Um, so continuing the conversations with them and building the relationships and talking with different staffers because they have staff at home and they have staff in Washington. So we're meeting all different, you know, people this round and still advocating for very much the same bills, which are in different, you know, spaces in terms of how close they're getting, you know, and how much support they have. So trying to continue to push those things through. And I had a, you know, a by chance meeting with staffers and actually our representative here, Glenn Thompson. I was singing the national anthem for a purple heart event, and they were all there. So I think having a level of confidence where I was like, you know what, I'm gonna take advantage of this opportunity. And I went and introduced myself to our representative and had a conversation and said, you know, I meet with your office next week and I hope that you'll be there. And um, so kind of like having these skills um and practicing the skill, you know, of advocating when you're out in the wild. Um it was really helpful to take part in all of the the training and the support that that we received in Rare Disease Week.
SpeakerSo yeah, I say even the the just the confidence to like, oh, hey, you know what? I've talked to these people before. I'm gonna go up and I'm gonna go talk to the representative and just go and try. Um as we kind of finish out the episode, uh, what advice would you have for parents listening who may want to get more involved in advocacy or are thinking about attending Rare Disease Week?
Speaker 2I think for me, um, kind of that piece of advice that I would give anyone who's who's ever thinking about it would be to find your courage. Um you don't have to be an expert in policy making, you don't have to be an expert in every bill or even understand like what that legislation legislation piece is. But you do know your kid, you know your child, you know your family's experiences, and you know kind of where those gaps lie and what you want or would hope to be better. And so I think for me it's making sure that your story and your voice has a purpose, being able to show up when you need to share your story and and really being able to say, I I did that. Look, look at me go. I stood on there and I did what I needed to do because in the end it's our voices that matter the most, and that's why we're there.
SpeakerI think I and I I like the you know the confidence and everything is uh yes, I think too sometimes, and only because uh my wife just did this the other week, but like five the advocacy doesn't have to be as big as like your state legislature, your whatever. Um we were going to uh Spider-Man, the new the new Spider-Man movie that just came out. And um, we keep seeing we went to the Odyssey the week before, so like we keep seeing the the uh Paw Patrol's uh dinosaur movie. We're like that's like that's like Ronan's world in one movie, like Paw Patrol and Dinosaurs, what it's a thing, like and we're both like this would be amazing if we could bring Ronan, but like I don't know if he's gonna sit for it'd be like his first like have to sit here and not like be up and around movie, and we think he'll he'll be okay, but like we just want to have it in like in an atmosphere that would be okay and not have to feel like oh we have to leave in the middle of the movie. And so Miranda went and she emailed the manager of the Foothills Theater and was like, Hey, um we have a son with special needs, and we'd really love to have like because they've done a sensory, sensory-friendly family movie series, they've done it before, but then they they transferred the owners, somebody else bought the theater, so it kind of they hadn't done it for a while, and and the manager uh emailed back and was like, Yeah, we did used to do those. I think we can we can start doing those back up again too, but like without a voice, they're just like, Yeah, this is fine. So even something small like that, like, hey, can we have a uh a sensory-friendly uh movie at like two or ten o'clock on Sundays, or you know, whatever it might be, that it's not it's not the main time, they're not taking away from those primetime tickets, but something the families can go to with kids that have special needs or need that sensory-friendly stuff, and then just have that community of people. Then all of a sudden you see people like, oh, they know it, they know, they know that's more way more local. So it doesn't have to be a big thing that happens, but just being the voice out there for your kids knowing that there's other kids that might benefit from it.
Speaker 1I think if you're on the fence about, you know, doing something like this or trying, I think just try it, just do it. Um, there's so much support. That was one thing that I found the most helpful is the first few days were just you know talking about telling, you know, your story and hearing, you know, different people speak from the rare disease community. And I think if you're on the fence, like what's the worst that could happen? Just try it. Yeah. Exactly. And you, you know, you might find something that you're really, really good at because we are all experts in our children. And when you're an expert on something, like sometimes we don't even know that we're an expert, but there's nobody that knows our kids like we do, and we advocate for them on a daily basis. So this is just a you know, a little bit broader audience that you're speaking to.
SpeakerYes, 100%. Like, I don't know, whatever it is, but we're a face or a person. We're not, we're not the the you know, docket, the dossier of of the this is a law. We're a face that can go with it, that really like, oh, oh, okay, there are faces. It's not just this mindless, you know, 400-page dossier on what's going on. Like uh these are people, these are humans that are here.
Speaker 1That yeah, it's helpful to, you know, have those lived experiences. And it's the same for, you know, our members of Congress, like it was when, you know, we all get together for, you know, our biannual, you know, meeting with the scientists. It gives a different meaning and it gives a different drive and a different sense of urgency when you see what your decisions or what your work is directly affecting. So it gives them like a renewed sense of purpose if they can see, you know, the people that their decisions affect.
SpeakerYeah, exactly.
Speaker 2Well, and I think too, we all took in that one pager of our kid and what our experiences are from our specific family. Um, and I think that that was huge because Eric, like you said, it it's the it's the face, it puts a face to a name, it puts a face to the challenges, and then that it makes it more personal for them. It makes them invested in wanting to learn about it and how you know their policies can help change our day-to-day lives.
SpeakerYeah, and it doesn't hurt that our kids are cute too. That's a plus.
Speaker 1Yeah, it's those one pagers were awesome, and I think some of the the families brought their child. So actually seeing that child in the flesh and seeing the challenges, you know, that they deal with it was very powerful.
SpeakerWell, listen, Jessica, thank you so much for joining me on today's episode. Uh, as we wrap up, if anyone listening is interested in learning how to tell their story for an event like Rare Disease Week, the parental uh parent advisory board received storytelling training, and last year's scientific and family conference featured a live storytelling workshop led by Effie Parks and Once Upon a Gene Podcast. The foundation is also helpful happy to work with people on learning to tell their story. So if anyone listening is interested in attending Rare Disease Week, you can register through the Every Life Foundation for Rare Disease, which will be linked in the show notes, where you can also apply for a travel stipend and financial aid to cover the cost of attendance. Um forget, if you're listening, please subscribe and listen wherever they listen to podcasts, and then new episodes will be dropping every two weeks, every other week, and links to everything we mentioned will be in the show notes. Thanks for listening.
