My Spoonie Sisters
Welcome to My Spoonie Sisters! If you're wondering what a "Spoonie" is, it’s a term lovingly embraced by those living with chronic illnesses, based on the Spoon Theory. It’s all about managing our limited energy (or “spoons”) while navigating life’s challenges.
Each week, join us to hear from your "Spoonie Sisters" host, co-hosts, and our inspiring special guests as we share real-life stories, tips, and encouragement. Whether you're here to learn, connect, or feel less alone, you’ll find a supportive space filled with understanding, laughter, and strength. Let’s journey through chronic illness together!
Tune in and join the sisterhood!
All guests featured or mentioned in this podcast will be listed for your convenience. Don't forget to rate and subscribe to My Spoonie Sisters and follow @MySpoonieSisters on Instagram for updates on new episodes and more. If you have a story to share or want to be featured on My Spoonie Sisters, please email MySpoonieSisters@gmail.com. We eagerly look forward to speaking and hearing from all our Spoonies!
Disclaimer: While we are not doctors or healthcare Practitioners, we want to assure you that this podcast is a credible source of information. It's based on our guests' personal experiences and the strategies we've found effective for ourselves. However, everyone's body is unique, and what works for one person may not work for another. If you have any health-related questions, it's always best to consult your Primary Doctor or Rheumatologist.
Remember, our goal at My Spoonie Sisters is to connect people and provide them with the support and tools they need to live better lives.
My Spoonie Sisters
Stacey a Voice Behind Rare Patient Voice
From the heart-wrenching journey of a mother's advocacy to the personal battles with chronic illness, Stacey Haynes's story promises to move and inspire you. We sat down with Stacey, a leading voice in the chronic illness community, to explore her transformative path—from her daughter Iris’s diagnosis of Crohn's disease at a young age to Stacey's own diagnosis of thyroid cancer. Stacey opens up about how these experiences led her to work with Rare Patient Voice, an organization that connects patients and caregivers with valuable research opportunities. Her story highlights the significance of community support, both online and offline, and underscores the resilience required to navigate ongoing health challenges.
As we shift our focus to the complex landscape of medical challenges, Stacey bravely shares her experience with thyroid cancer, from the initial diagnosis to the ongoing recovery process. She reflects on the vital role her empathetic family played during her journey. Stacey also talks about the challenges of managing health transitions like perimenopause, providing a candid look at the medical appointments and adjustments that come with it. This conversation also explores how Rare Patient Voice empowers patients and caregivers by facilitating meaningful connections with medical research, highlighting the importance of authentic patient participation in advancing medical science.
In today's digital age, social media has the power to unite and amplify voices, and Stacey's journey demonstrates just that. Through platforms like Instagram and TikTok, she has found a vibrant community that offers solidarity and resources. Stacey also shares insights from Social Sid's advocacy within the HS community, illustrating how relatable content can spark impactful connections. We wrap up with an engaging discussion on the emotional trials parents face when seeking diagnoses for their children, emphasizing the need for determination and trust in one's instincts. Stacey's dedication to amplifying patient voices and building a supportive community is a testament to the transformative power of shared experiences and collective action.
Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.
Let's Get Started - Rare Patient Voice
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Welcome back to my Spoonie Sisters podcast. It is your co-host, allie, here. Yes, I am doing the introduction today and I am very excited, and I do apologize in advance if I mess this up, but today we have a truly inspiring guest joining us Stacey Haynes. Stacey is a proud wife, mother and fierce advocate in the chronic illness community, and I mean fierce. Her journey began when her daughter was diagnosed with Crohn's disease at just two years old, followed by ulcerative colitis and arthritis. Stacey's advocacy has also been shaped by her own health challenges, being diagnosed with thyroid cancer in 2016, which she thankfully overcame. Yes, for the past three years, stacey has been an integral part of Rare Patient Voice, rpv, connecting patients and caregivers to paid medical research opportunities. Through her work and her presence on social media platforms like TikTok and Instagram, stacey is amplifying patient voices and fostering meaningful change babies. We're excited to hear more about her story and the incredible work that she is doing. Hello, stacey, and welcome.
Speaker 2:Hi, thank you, Thank you. Thank you so much for having me today. I'm so excited to be here and share the space with you today.
Speaker 1:I am so excited. We also have our co-host, Andy Linnea, and Jenny, our main host here. Hello to all of you. We're all very excited to interview Stacey today. Stacey, can you give us a little introduction? I know I kind of give a brief one, but can you introduce yourself, Let us know and our listeners who you are and a little bit about yourself.
Speaker 2:Sure, that would be awesome. So I'm Stacey Haynes. I run the social media department here at Rare Patient Voice. I am also part of the outreach team. We have an amazing community presence on Instagram and TikTok Facebook. We're on all the social media platforms. As you stated, allie, I am a wife, I am a mother, I love the outdoors. I live in the beautiful island of Kauai in the state of Hawaii. I'm very thankful to be in the chronic illness community and to be an advocate in such an ever-growing community. And again, thanks for having me.
Speaker 3:I just have to say, allie, you did a marvelous introduction. Why thank?
Speaker 1:you.
Speaker 3:Stacey, I am just thrilled to have you here because I feel like I know you so well. Thank you, thank you, thank you, thank you. Do you mind sharing a little bit about your family's journeyyear-old son who is? He's like the epitome of health.
Speaker 2:He never gets sick, he's just perfect. And then we give birth to this little baby and she's just so fragile. And day four literally started my journey into finding a diagnosis for her. And it took years and years and multiple doctors living on this little teeny rock in the middle of the Pacific. We had to do a lot of traveling to get the care that she needed. The Children's Hospital is on Oahu, so it's a 20-minute flight from here, so our pediatrician would bounce us back and forth to different specialists and Iris's health continued to decline and decline, and decline and so we almost lost her. And that's when my husband and I decided to jump on a plane and I'm originally from the East Coast, the Philadelphia area so we jumped on a plane and my husband and I went to the Children's Hospital of Philadelphia and, just shy of Iris's third birthday, she was diagnosed with Crohn's disease. So once we had the diagnosis, I felt that we had a better plan. We could. Finally we had a name to what was going on and we could finally start to help her in her healing journey, which ended up taking a lot longer than I had expected. I figured we had a diagnosis.
Speaker 2:I had never met anybody with Crohn's disease before, let alone a toddler with Crohn's. I thought that we were going to get a diagnosis. I had never met anybody with Crohn's disease before, let alone a toddler with Crohn's. I thought that we were going to get a diagnosis, get medication and send us on our way. Well, finding her diagnosis snowballed into more doctors, more medications, more of everything, and it gets a little overwhelming. And that's when I turned to social media. I was all by myself, my husband and I. We didn't know anybody with this condition. What do us millennials do, gen Z? We turned to social media, so I started an Instagram page and overnight I had the chronic illness community open their arms and take us in and literally hold my hand. They would walk me through every doctor's appointment. Everybody would give me different questions that I should be asking the doctors.
Speaker 2:The support that I had from this online presence literally became my family overnight, and if it hadn't been for the chronic illness community, I'm not sure that Iris would have her progress in her healing journey would have happened so quickly. So she's 11 now and she still has good days. She still has really bad days. One thing that I've learned about chronic illness is the word chronic is all the time right. So it's something that we have to manage her health on a daily basis, whether that be not going to school because she needs extra sleep. With Iris, everything has to come a little extra harder. She's a dancer but she's got to work a little bit harder than all the other dancers because her body is sore or she has to listen to her knee because her knee can't quite move that way.
Speaker 2:Today I do have to say, through this whole journey, community to me has been number one. It has been the greatest thing to ever come out of chronic illness. Not only our online presence but our community as a whole here on Kauai. My husband and I had to leave. I ended up my daughter and I ended up living at the Ronald McDonald House at Stanford for three months and that's hard as a family because at home I had an eight-year-old son at the time and my husband, so it's hard to separate that, like in a family dynamic. Our community really stepped up and they had fundraisers for us. They did all kinds of things. I really, really, really owe it to community in general for me being able to sit here today having this conversation with you guys, for my daughter to be able to attend public school, for her to be able to dance, for my son to feel so confident in who he is. The journey has been crazy and it's not over, and it's just neat to watch the community grow.
Speaker 3:It's been neat to see you share a little bit about your story and your daughter. I love when that's incorporated into what we see on Instagram and TikTok. I think it's a beautiful thing. So thank you so much for when you share that.
Speaker 2:Thank you. Yeah, I love our Instagram page with Rare Patient Voice, but we can get to that, we'll get there.
Speaker 4:Stacey, how's it going? So how do you? You have your hands in a lot of things. How do you stay motivated? How do you stay motivated while navigating your own stuff and navigating stuff with your daughter and balancing work and life? How?
Speaker 2:do you navigate your own things while caring for so many other people? This is a tough question and it's really easy for people to say I do self-care or I do yoga twice a week or I do breathing techniques in my room. Really, I'm just a regular mom trying to keep my head above water while raising a family, being a wife, holding a full-time job and being committed to my kids and their extracurriculars. And, honestly, my work group I work at Rare Patient Voice 40 hours a week and there's about a team of 40 of us and all of us are either patients ourselves or family caregivers. So, working with such a tight knit group, they allow a lot of flexibility.
Speaker 2:So if I need a day, or if I need 10 minutes, or if I need time for like, just a mental health day, for me it is without question. They're like yes, please take that day for you, and for me that might literally be laying in bed and scrolling on TikTok for two hours, or that could mean taking a walk on the beach. But I like to be realistic, andy, when it comes to that question, because it's so easy for us to say I sit down and read books for two hours or, literally, for me. I clean my house real quick so that the space around me is quiet, so that I can have a quiet moment. Right, I find those self-care moments in when Iris is in the bathroom taking a bath and my husband is putting away his work stuff for the day and my son's taking a nap in his room and I have that 10 minutes to just reflect and really like thankful. Especially now that everything's kind of like baseline, it's a lot easier for me to breathe.
Speaker 2:When I was in the thick of it there really wasn't time for self-care and I know a lot of times people are like you need to take care of yourself or you can't take care of them. I would be lying if I said that there were nights where I wasn't up at three o'clock in the morning Googling and web-emding everything and anything that I could. I would be lying if I told you the first four years of Iris's life I did any sort of self-care, because I didn't. It was survival mode. And then, once we got to that baseline, we could all take a deep breath.
Speaker 4:Right.
Speaker 2:I think keeping an open communication with my family is what kept our family together, Because a lot of times, when you're really in the thick of it, when it comes to flight or fight, you might lose your family over certain decisions that need to be made or lack of being present. Have you ever seen that movie Wonder? It's Owen Wilson and the little boy with the facial deformities. There was one night that we had come back from Stanford and we had been gone for three months and there was this part in the movie where there's an older girl in the movie and she takes on so much responsibility and she never wants to be a burden on her parents because of everything that's going on with her younger brother. And my whole entire world shifted that night sitting on the couch, because for three months I would call my son and FaceTime my son because he's my number one. Right, he's always been super solid. I was always just like he's okay, he's okay.
Speaker 2:And when I saw that part of the movie, everything shifted for me. That day, you know, there was extra time for my 12 year old son, tickling his back at night before bed, asking him for real like how was your day today, bud? Not like all right, he's good, he showered, he's in bed. So it's a journey in itself trying to navigate chronic illness and nobody has the answers and there is no workbook on the right way or the wrong way and you're not going to know whether it's the right way or the wrong way unless you live it and you just live day to day.
Speaker 4:So in the intro we briefly discussed a little bit about your journey with thyroid cancer. Do you mind talking about it?
Speaker 2:It was a really quick chapter in my life. I was working full-time at our local organic grocery store out here. I was the grocery buyer there and I was a full-time mom. I was working full-time and I was just fatigued all the time, just tired. I wrote it off as I'm a mom dealing with a baby with chronic illness. I'm a mom of a son who's eight years old, who's playing Pop Warner football. I'm a wife. I'm a mom dealing with a baby with chronic illness. I'm a mom of a son who's eight years old, who's playing Pop Warner football. I'm a wife. I'm trying to keep the house together and work 40 hours, right. So I kept writing it off, kept writing it off and honestly, I was sitting there one day at the computer doing research on like holistic medicines and things like that.
Speaker 2:I felt a lump on my throat. I immediately went into a full sweat, panic, like my gosh. I called my doctor, they did a biopsy on it and immediately he was like this is stage one cancer. Not even a week later we removed half of my thyroid and that was a nightmare. Talk about horrible surgeries anything in your throat, because you have no idea how much you use your neck muscles. So that was a really quick turnaround, andy. It was one week biopsy, next week diagnosis, following week take the thyroid out and then it was maybe like a four or five week recovery. But my husband allowed that time for me to rest.
Speaker 2:Iris Ann has always been very intuitive. My daughter was chronic illness so even at two years old when I had the surgery she was very delicate and Iris has always been very delicate and very sweet and very kind and very not like most toddlers that are like the bull in the china shop kind of kids. You know. She's always just been very delicate and for her at that age to see me in the situation that she's usually in it was it was neat to see that just because she was so compassionate. And but realistically, that chapter in it was neat to see that just because she was so compassionate, but realistically, that chapter in my life was very quick. I still get scans and things like that and my thyroid needs to be checked. Now that I'm entering perimenopause which is nightmare I have to check on my thyroid more often because we rely on our thyroid a lot as women. I always have to make sure that I keep that in check as well.
Speaker 4:Thanks. Thank you for sharing.
Speaker 3:Thank you for asking. I have a follow-up question for you. With having part of that removed, were there medications that you had to go on, and what does all that entail?
Speaker 2:Yep, I don't know if hormone medications are crazy, because it's not a one-size-fits-all. I was introduced to so many things to me, so my whole entire upbringing has been holistic, it's been alternative, it's been only organic, no GMOs. And when Iris was born, I tried all of that with her and none of it was working and I finally had to say yes to pharmaceutical medications. I finally had to say yes to the Western ways. So, jen, when it came to my thyroid, the doctor was putting me on tons of different medications to try to supplement the lack of, because I only had half, and it was awful. It was absolutely awful. I was literally losing my mind. I was angry all the time or I'd have hot flashes. I think I was maybe 32, 32 when I had it, and so I ended up saying no more, I can't do this anymore. I did it for like six months trying to regulate all of these different medications and since then it's been OK.
Speaker 2:I have half a thyroid and since I've been 32, I've had enough thyroid to carry me through. But I'm thinking that's changing. Actually, as we speak, I've got 15 doctor's appointments with different doctors coming ahead. I've been having like these crazy cluster headache, so they don't know if it's hormone related because of the perimenopause, or so. I've got eye doctor, neurology. I've got like a whole plethora of appointments coming up. So no medications for my thyroid right now, but I'm sure that that will be something that I have to come to terms with in the very near future. Thank you for sharing that.
Speaker 3:For those who might not know, can you explain what Rare Patient Voice does and how it helps patients and caregivers?
Speaker 2:So Rare Patient Voice connects patients and caregivers to medical research studies, right? So pharmaceutical companies come to Rare Patient Voice asking us for help in recruiting for clinical trials online surveys, zoom interviews, in-person interviews, focus groups, bulletin boards tons of different opportunities to get involved and we connect patients and caregivers to these studies and, in turn, the patients and caregivers are paid for their time. So we pay at a rate of $120 an hour. So say, for instance, we have a Zoom meeting that is going to be 60 minutes long. Participants, we will send out invites to these potential participants and if they pass the screeners, then they are invited to the study and once the study closes, each individual is paid out anywhere from $120,000 or more, depending on what the pharmaceutical companies are offering us. So we have a panel of over 100,000 patients and family caregivers. We take a lot of pride in that, because we work really hard on the back end to make sure that these 100,000 patients and caregivers are actual diagnosed patients and actual family caregivers that take their time to care for their loved ones. The last thing we want to do is allow fraudulent individuals into a study that they have no idea about. There's no reason that anybody should be doing a Crohn's disease study if they've never lived with the disease or have ever cared for somebody with that disease. So we have an amazing panel management team who goes through each individual profile one by one, every single day, every single sign up and we look for certain red flags with these sign ups and if they pass the criteria, they are verified and they are part of our panel and then for them moving forward, if we have any studies that match their conditions, they are emailed an invite that they have the choice to open or not. You're not committed to anything when you sign up, but you do have opportunities to amplify your own voice in a different way to advocate.
Speaker 2:Before I knew anything about medical research and things like that, I only thought it was clinical trials. I thought that only clinical trials existed and that was the only way that you could participate in medical research. I was definitely wrong. There are, I mean, a simple survey. Maybe a pharmaceutical company needs to know for a Crohn's disease panel. Would you be interested in XYZ, right? So then they push that panel out to all the Crohn's disease patients or caregivers and we answer that maybe that survey will be the reason that the next big breakthrough happens, because there was a panel of 700 people that said you know what? Yes, I would definitely love to move forward with you in this new, this X, y or Z. There's so many different opportunities to get involved in medical research. That's one thing that I've taken from Air Patient Voice, from an individual standpoint, thinking that clinical trials were the only way to get involved in medical research. So that's really what we do, is we just connect the community?
Speaker 3:with the research. Well, and I don't know if all of you are signed up. If you are not, go do it. I've done some. I've done some on depression, on psoriasis, on rheumatoid arthritis Super easy. Some of them are just a questionnaire. Sometimes it's the Zoom. They're all easy. It's incredibly easy to do, and if you don't qualify, you don't qualify. Sometimes it's because maybe they're looking for a black man and I'm a white woman. That's okay, I don't fit the criteria, I move on, but I think it's great. I love the emails that you send out. Sometimes I get reminders on my Instagram from you. I love that too. For those listening. If you haven't signed up, we have a link in the show notes, so go do it. It's super easy. Just take the five minutes. All right, this is cool. Can you share a success story or impactful moment that you've experienced while working with Rare Patient Voice?
Speaker 2:So you sent me this question and it really I had to really think about it because I feel like every day working with Rare Patient Voice pulls on my heartstrings all the time. I feel really proud of what we do at Rare Patient Voice. There's so many right. We have many different communities within our community. At Rare Patient Voice, there's so many right. We have many different communities within our community. At Rare Patient Voice on our Instagram, One of my favorite success stories is her handle.
Speaker 2:Her name is Social Sid. She is an advocate for the HS community and she did an in-person interview for us that we connected her with and she had to fly to Atlanta, Georgia or something. There was a handful of individuals in the HS community that follow us on Rare Patient Voice that got the green light and they went and did this in-person interview and there was a whole room filled of them and not only have they all become best friends, but it really was a catalyst for their I don't want to say their success on social media and their their advocacy on social media, but it really upped their game. It was a total game changer for them and they were able to come back from that. They've been to so many different hs community events. Now they've created their own events and Social Sid always brings it back to us, Like whenever she's on podcasts or being interviewed. She always says Rare Patient Voice helped me get to where I am today, simply because she signed up and was able to use her voice and then took that and ran with it. Right, Just building the confidence in individuals. Our community on Instagram grows every day.
Speaker 2:I personally try to make our Instagram relatable. I don't want it to be filled with just we're research. You know we're helping research companies fill studies. You know you get a number. You get a number. You get a number.
Speaker 2:I want to know, Jen, what's your story? You know, and I reached out to Jen probably two years ago, Right, and now we talk about wildfires and you know, I see something going on and I quick text, Jen, like, oh my gosh, did you hear about this? Or you know, I want to know what Andy's story is and Allie's story is, and I want to know that your daughter is going through similar things that I am. I'm not just some AI bot behind Instagram, right? We're a real community, we're real people, we community, we're real people, we have real stories and we're real individuals, right. So I like to feel our Instagram is like a success story too, because it's kind of my baby.
Speaker 2:Rare Patient Voice came to me. They found me through my social media because one of the women that works here at Rare Patient Voice she also had a son who had the same diagnosis as Iris, so she had been following Iris literally since you know we were looking for a diagnosis. She reached out to me I guess it was right after COVID, I think because I wasn't working. She had asked if I could start an Instagram for them or this and that I wasn't looking for work. And then it just turned into yes, and can I have TikTok and can I do this and can I do that, and it's just been so much fun, I agree.
Speaker 3:I think it is a success story and you are talented at it. They have the right person doing the job. You are engaging, you're fun, you talk to people, you reply back to people and that's what makes you you. That's what makes us special.
Speaker 1:Yeah, thank you.
Speaker 3:How has social media, especially platforms like TikTok and Instagram? How have they helped you connect with the chronic illness?
Speaker 2:community. Well geez, in this day and age it's so easy. I mean literally, you just type in a condition and you find your community right. I've always had a really chatty mouth, right, I've always been hey, I'm here that kind of person. So for me, social is a lot of fun to connect with individuals, to network, to find new resources. When I find new things, I want to tell everybody. I want our community, our PV, to know that I found a new gluten-free product that my daughter might be able to have. That's not only gluten-free, but it's peanut-free and egg-free and dairy-free and free-free-free.
Speaker 2:Like social media obviously has its ups and downs, but I feel like, if you use it correctly, it's the greatest thing to happen to the human race, because you have instant gratification, you have instant answers, you have instant connections. I often have people reach out to me on Instagram asking how do I start? How can I start my advocacy? Where do I start? And I've been there. I literally say share your story, start with your story right. Start with your story. You have a story to tell, you know your story Right, so start there and then you will find community and the community will come to you Right? I love social media. Not everybody loves social media. You know my husband isn't very good at it, but I love it Right. So social media for me is the greatest, and to be able to be a part of it every single day it's such a blessing.
Speaker 3:I couldn't agree more. Anyone else want to chime in? Then TikTok.
Speaker 1:I love it. Yes, tiktok, I just I love how you said this in the beginning of the podcast. Like you were going through this alone with your daughter getting diagnosed, and then you reached out on social media and got a plethora of DMs and people helping you. I always tell people who just got diagnosed with anything or who is in the process of getting diagnosed to find your people on social media. Like you said, just hashtag. Like when I was starting Enverol, I hashtag Enverol and now I'm best friends with somebody I found injecting and that was like five years ago. So, yes, please contact or hashtag whatever you have, whatever you're on, and connect with people who understand what you're going through. And then, stacey, do you have any advice for parents who are going through what you went through with their children trying to get a diagnosis, any advice that you would give them?
Speaker 2:I don't know if I'm the person to ask that, because I got angry and once I started to get angry, I started to get to where I needed to go. I think being complacent or compliant with something that doesn't sit right in your gut. You need to listen to that. If you're up at 2 am and the doctor sent you home at 4 o'clock in the afternoon and you still don't think something's right, get back there or go to a different hospital and ask as many questions as you can. If you don't know the questions, turn to your online community and ask for help. There's always somebody willing to help and this is going to sound weird too, but chat GPT. If you ask chat GPT, what are the top 10 questions that I should go in and ask my doctor today about this? That and the other ChatGPT will break it down for you and say here are the top 10 questions you should ask your doctor today, right? So if you don't feel comfortable asking for help within a certain community, chatgpt can totally help you.
Speaker 2:I'm not always team AI, but there is a time and a place for it. I think if you're not confident enough yet in taking that step for asking for help with different communities you can turn to that. That's a great asset to use. I think listen to your gut is really what I'm going to say. If you feel you're sitting in there and there's a doctor not talking to you the way that you want them to talk to you, or a nurse comes in and you don't feel confident that they're going to be okay handling your situation for the next 12 hours, you can ask for a new nurse. That's okay. You have rights within the medical industry and I think that if we had more people advocating for individuals that it's okay to say no or it's okay to say yes, then I think we would all feel more confident walking into a doctor's office, right? So I just feel, doing your research. Doctors will say don't do research, I do your research, do your due diligence, learn as much as you can about your condition and go from there.
Speaker 4:Stacey, your personality is contagious. It is making my heart so warm. Okay, it's making my heart so warm. Okay, it's making my heart so warm. What is Stacey's goal for the future? Personally, professionally, with your family? Where do you see you growing in the future? That's a great question.
Speaker 2:I've been with Ray Patient for three years. This year we'll make four. I think I love collaborations. I want to do more collaborations. This is me getting outside the box. This is my first podcast with Jen. This is like probably the greatest start to podcasts. I want to do a lot more collaborations. I want to allow the community to give me ideas on how we can expand, how we can better accommodate them. I am a voice for the community, so use me I'm in no rush with Rare Patient Voice to run as fast as I can. I'm very comfortable with where I'm at right now. I think fostering and tidying up all the little corners of our social media and our community I think is one of my biggest goals for 2025 with Rare Patient Voice.
Speaker 2:My personal goal is to get even more healthy with my marriage. My husband and I have been married for almost 20 years. I feel like the past six months have been like really frayed. We're doing tons of different things together that we wouldn't normally do. I think for 2025, personally, will be my marriage and my self-care. I have a lot going on with me now medically. I want to make sure that I nip that in the bud now so that here comes summer, and summer is my favorite season of all. I'm ready for it. I think for me, this year is just I don't have big goals for 2025. I'm very happy with where I'm at right now. I feel good mentally, I'm feeling really good physically. I kind of just want to taste that for a little while and I've got not huge goals for 2025, but the goals that I've set I think are going to be achievable and I look forward to more collaborations and just tons of different networking and just making my voice even louder for everyone.
Speaker 3:I would like to see you at events, so like when I went to ACR Convergence, I think it'd be awesome to see you guys there with the table set up.
Speaker 2:Yeah we do do events, jen, jen and if you ever go on and you see, brooklyn runs our Facebook, brooklyn and Jen are a mother-daughter duo, but we are the three of us are a team and they travel coast to coast doing different shows. I think, jen, I think she did close to 22 patient events last year. Jen, if you see one, we're like, wow, rare patient voice should probably be here. Send it to me, because we are always looking to travel. I don't really get to be that person because I live in the middle of nowhere and it's kind of expensive for them to get me places, but the louder we are about getting me to places is a good thing. If you see any, send them our way, because Jen and Brooklyn are always looking.
Speaker 2:We're already building our list of where we're going in 2025. We have a bigger budget this year, so we are looking to spread our wings and get all over the United States. We're looking for different social media conferences maybe we can attend this year. Definitely patient events, caregivers events. We also do client events. But that's Jen and Brooklyn, and I kind of stay more towards the patient and caregiver side of things. I mean, rare Patient Voice is all over the place. I guess maybe I should be a little bit more loud on sharing that on social media.
Speaker 4:That is so funny that you would bring that as a segue, because my next question was can you tell the people how they can stay connected with you so that they could be all wrapped in this contagious personality, because they need a dose of it for real. Thank, you.
Speaker 2:We are all over social media. We're obviously on the biggest platforms. We're on Facebook, instagram, tiktok. I just started Blue Sky. We're on Fred's what else? Pinterest, teams we're not on Red, we're on Teams. Sorry, but yeah, you can follow us on all of those.
Speaker 2:Know that if you are on Instagram and you DM, it's me that you're going to talk to 100% of the time. There's nobody else that runs that account. You will always talk to me. I am kind of in the middle of nowhere, so I'm a five hour difference right now from the East Coast. So if you're laying in bed at night and I don't get back to you, it's simply because our time difference. But I have my phone on me all the time and I hear you dinging and I usually don't ever let more than six or seven hours go before replying. Facebook is Brooklyn, so if you're ever on Facebook and you're looking to talk to somebody, you'll be speaking to Brooklyn. Tiktok is always me. Threads is me. I have a hard time with Threads and Blue Sky. I don't. Are there any tips or tricks and anything for those those guys? No, what is Blue Sky? Blue Sky is kind of like.
Speaker 1:I have Blue Sky.
Speaker 2:It? What is blue sky? Blue sky is kind of like I have blue sky. It's kind of like x or twitter. It's kind of like a. It's kind of like threads. I saw like I saw it a week ago when everybody was getting ready to do the tiktok ban. Everybody's like, follow me here, follow me there.
Speaker 1:So I started all these social medias or on blue sky, but it's not in there for me it's like a breath of fresh air because I follow like nature stuff on there, science, science stuff. So when I just want to get away from the craziness of social media, I go there and I look at pics of like animals and space and I'm like I love blue sky.
Speaker 2:But yeah, start to love it, then I'm going to change my attitude around it.
Speaker 3:Okay, I think we all need to give it a better chance. Okay, well, thank you so much, stacey, for sharing your journey and all the incredible work that you do at Rare Patient Voice, dedication to amplifying the patient voices and building community All of it is truly inspiring. We're grateful for all that you do and for having you on the podcast today.
Speaker 2:Well, thank you so much for having me. I really do appreciate it. I was very nervous when we got in here, but now I feel like, wait, are you guys going to call me next week so we can all hang out?
Speaker 3:nervous when he got in here but now I feel like wait, are you guys gonna call me next week so we can all hang out? Yeah, I know we're gonna have to come up with like another option.
Speaker 2:I love this a lot more often oh yeah, or maybe we'll just go live on instagram a lot more or something. I like that idea too.
Speaker 3:Yeah, we never do that on my spinny sisters, so maybe we can do that yeah that could be fun oh, it's growing. Thank you everyone for being here. I appreciate every single one of you, ladies. You all are amazing and I love you to pieces.
Speaker 2:Yes, thank you, girls. So much for having me today.
Speaker 3:Until next time don't forget your spoon.
