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
A Mother's Advocacy in the Face of Linspad Syndrome
Kim, a passionate advocate and mother, shares her incredible journey of adopting two daughters, one of whom faces the challenges of an ultra-rare brain condition known as Linspad syndrome. Through personal trials and triumphs, Kim has emerged as a formidable voice in the advocacy space, particularly with her work at the Child Neurology Foundation. Explore how Kim has become a beacon of hope, leveraging her unique experiences to connect families with crucial resources and create a supportive community, all while emphasizing the importance of clinical trials and the limitations of insurance coverage for breakthrough therapies.
The Child Neurology Foundation's extensive network of 25,000 social service organizations is a lifeline for families navigating neurological conditions. Discover the array of tools and resources offered, such as transition of care toolkits and seizure action plans, aimed at providing comprehensive support. Mental health education for caregivers is a critical component, empowering them with strategies to manage the unique challenges they face. By transcending financial barriers and providing essential services like free flights and accommodations for specialist appointments, the foundation demonstrates its unwavering dedication to each family's journey.
Family involvement in clinical research plays a pivotal role in shaping effective therapies, and Kim's experience on a parent council for a clinical trial underscores this point. The conversation highlights the evolution of decentralized clinical trials, which bring flexibility and engagement by conducting trials in non-traditional settings. The value of building community connections, especially in rural areas, is also examined. By sharing insights and fostering collaboration across various fields, Kim and the Child Neurology Foundation illuminate the path toward impactful, patient-centered treatments, while emphasizing the importance of reaching out for support when needed.
- Email: Programs@childneurologyfoundation.org
- Website: https://www.childneurologyfoundation.org/
- Fill out an assistance request form to get support:https://www.childneurologyfoundation.org/family-suppo
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Welcome back to my Spoonie Sisters. Today I am thrilled to introduce our incredible guest. This is Kim, seasoned advocate with over 18 years of experience supporting children with special healthcare needs and their families as a dedicated mom raising children with unique needs herself. Kim's personal journey fuels her deep passion and commitment to this work. In her current role at the Child Neurology Foundation, kim oversees a network of over 80 advocacy organizations, bringing social and emotional support to families. She's also been instrumental in clinical trial advocacy and patient engagement, collaborating with researchers, clinicians and even the FDA to ensure families and patients have a voice in the healthcare system. Beyond her professional achievements, kim finds joy in reading, volunteering at her daughter's schools and spending time with her family. Kim, thank you for being here, and your dedication to making a positive impact is nothing short of inspiring.
Speaker 2:Thank you so much. I'm happy to be here today.
Speaker 1:It is such a joy to have you here and listeners. We were just complaining about the cold weather and I don't envy you right now.
Speaker 2:No, it is a balmy three degrees here in Cincinnati, and so we're just trying to stay warm.
Speaker 1:I think you need a heater next to you at all times, maybe even a blanket. I do. I have a heated blanket on right now. Let's dive in a little bit. Kim, your story as both a professional advocate and a parent is powerful. Can you describe a little bit about your personal experiences raising children with unique needs and how this led to this path of advocacy?
Speaker 2:Sure, I've always been very interested in helping children who have unique needs. I originally majored in college and early childhood and early childhood special education. I was an intervention specialist for a number of years before landing at the Child Neurology Foundation and in that time my husband and I adopted two little girls, and one of my daughters actually was diagnosed at one with two rare brain conditions schizencephaly and polymicrogyria. We just recently found out that she actually has an ultra, ultra rare condition we found out yesterday from whole genome testing. She is one of two identified to have the condition that she has. It is called Linspad syndrome.
Speaker 2:I'm probably going to be diving into advocacy in that area soon, but I really started early on, when my daughter was diagnosed with her two-year brain conditions, by trying to find interventions that would work for her, that were going to be impactful. I researched, I talked to a ton of different families and then got her involved in clinical trials. Because the one thing that I realized very early on is that my insurance would only cover 20 OT, 20 PT and 20 speech visits, as if she had had an accident, and that's per year, and so you know those visits would be gone in a heartbeat and I needed to find a way that I could afford to give her intensive therapy that was really going to move the needle for her. I found that in clinical trials. So through my work by or through my participation in the clinical trials, I then was asked to serve as a co-chair on a phase three clinical trial called I Acquire, out of Roanoke, virginia Tech.
Speaker 2:I met some wonderful people in that advocacy space who also, you know, have a heart for helping children with rare conditions, and some of those people worked at the Child Neurology Foundation, which is how I came full circle and was employed at the Child Neurology Foundation. We're myself, along with my colleagues, actually get to help others who have children with complex health care needs. We also support clinicians as well. We have our hands full. There's a lot of good work going on in the space and a lot of connections that we make with a lot of our advocacy partners, and we really kind of serve as this hub connecting our entire community together to support families and children with complex health care needs.
Speaker 1:That's an incredible journey, but I have a feeling it's extremely rewarding.
Speaker 2:It is very rewarding. Yes, for sure. I always say that my life is my work and my work is my life, because they're so intertwined. If I am doing a wonderful job at my job, then people like me are going to thrive and people like me and my family are going to benefit. It's personal for me. It's personal and professional. I think that's what gives me the drive to really do what.
Speaker 1:I do every day. I think that's what makes it better. It's better when you get it. You understand these families so you can better support them.
Speaker 2:Yes, I mean there are so many challenges that our community faces every day, some out of the blue, some that are just consistent and daily challenges that really can wear on you. And for me it's about building that community for families so that they're not feeling like they're alone all the time. A lot of people in our community it's really difficult to go outside of the home with their children, especially if they have some harmful and disruptive behavior or if they have seizures consistently that aren't controlled and it's scary. It's scary to go out into the community. So the more we can connect families who are dealing with these similar things, the better our families do, the greater their mental health is and the more connected they are to the resources that they need in the community.
Speaker 1:That's a really important point that you brought up is connection is crucial because it's easy for these families to find themselves living on an island.
Speaker 2:Because it's easy for these families to find themselves living on an island? Yes, for sure, and you think you're the only one you know when you're going through it. You think you're the only one because you're dealing with the same things over and over and over every day and maybe your old friends don't get this new life that you live. But in all reality, yes, having a rare condition, you know it's rare sort of for your condition, but there are a lot of families out there who have children with rare conditions. It might not be identical to yours but they deal with a lot of the same challenges and rewards that you deal with every single day. And so you know it's important to have that community.
Speaker 2:My daughter is enrolled in CP Soccer and it is just a lifeline for us to be able to connect with these other families. And you know, when my daughter was really, really struggling, I knew that when we went to CP Soccer those moms there were going to treat her like you know they were her own, and I got a little bit of a break to just get to be with other moms and connect. And if she was throwing a fit or having a tantrum, one of the other moms would help out. You know it was nice because they got it, they understood it, and a lot of times my daughter would listen to them better than she would listen to me. Right, because that's how it works with children.
Speaker 1:Most definitely and, like you said, it doesn't have to be the exact same rare condition, as long as you find people that support you, listen to you and get it Absolutely.
Speaker 2:Yeah, there's something to be said about that and you know we have educational courses at the Child Neurology Foundation and so I'll get on and I'll hear some of the conversations that the families are having and you know it's ironic the connections that people can make and what they're connected by as well. So you know, you know seeing birthdays or you know that kind of a thing. It's just, there's something about it that really you can tell fuels these families when they make these connections. I think we all need a little bit more fuel behind us to help us get through the day, the week, the month, the year. It's so important, so important to connect. I think sometimes we don't do it because it's one more thing to do when in all reality, that connection is actually going to help you be better at caring for your child with complex healthcare needs or your family member that you're caring for. So, so important to make those connections and go through it with someone instead of by yourself.
Speaker 1:Absolutely. You also oversee an incredible network of over 80 advocacy organizations. What does collaboration look like within this network and how do these connections make a difference for?
Speaker 2:families. Sure, now we actually have over 90 since the last time. We're growing astronomically, and we're growing because there is value in what this network does. Our Neurology Social Services Network basically gathers together the rare disease community and provides emotional and social service support to families. We send out an annual needs assessment here at the Child Neurology Foundation. One of the things that we heard loud and clear a few years back was that families are really struggling to get connected to other families who are walking a similar journey. They're also really, really struggling to get connected to social service support. So they're struggling financially because insurance is getting more expensive, health care is getting more expensive. Health care is getting more expensive. The needs that they have for equipment and supplies go beyond a typical child, and so they need that support. They need respite care, they need sometimes food, housing, employment. We've met so many families who can't, where one parent or the other cannot hold a job because the school keeps calling and saying the child is having recurring seizures and they can't have them at school because it's not safe. You know those things happen consistently and so when you have the loss of income, it is absolutely impactful to a family. It can make it difficult to pay your mortgage or your rent.
Speaker 2:We at the Child Neurology Foundation have this network where we can anyone who comes to us or any doctor who refers a family to us. They fill out a simple assistance request form. Then we get them connected to the resources that they need. We utilize that network of advocacy organizations. We also have connections to over 25,000 different social service organizations around the United States. That network is really important. We also work with our network to collaborate on different trainings. We will help our network train their family support specialists that work directly with their families in their community. We also provide education for caregivers for their mental health so that they learn strategies to survive, not just thrive. That's to thrive, not just survive. The opposite there, that's actually the name of our course from surviving to thriving. Because we want to support our family's mental health, we want to have them think about these challenges in a different way so that they can be successful with you know, everything that kind of gets thrown at them throughout the year and throughout, you know, day in and day out.
Speaker 2:With our network we've also created a ton of resources and a ton of supports, like a transition of care toolkit. So those families that are transitioning from pediatric to adult care. We have resources for that. We have seizure action plans that will be helpful if your school is, you know, really struggling to get on the same page with. How do we handle a child having a seizure? What are the proper steps that we should be taking?
Speaker 2:I've actually used our child neurologist new visit toolkit with a couple of different neurology appointments that we've had for my daughter, just to collect my thoughts beforehand and make sure I have all the information that I want to communicate to the neurologist right there in front of me, because we know when we get in these meetings they only have a limited amount of time and you're trying to give them all the information that you have about your child, and it's overwhelming and it's hard, especially the older they get and the more history they have. Finally, we have a respite care notebook as well, which, if you can find respite care, if that is available to you in your area, it basically allows you to put all the information down about your child so that your respite care provider knows what to do. What do they do if your child has a seizure? What are some calming strategies for your child? You know anything and everything you can think of that would help make that care successful for your family?
Speaker 1:What does it look like when a family receives this diagnosis and they come to you? Where do you go from there at the beginning?
Speaker 2:Good question. Some families reach out to us through our assistance request form. Some call. Regardless of how they get into contact with us, they can be referred from their clinician. We pick up the phone and we call them and we say you know, tell us your story. You know, we want to hear what's going on. Maybe they have very little information. If they have very little information, it's our job to give them education, to give them all the information that can be helpful to them, but, more importantly, to connect with them because, again, it can feel so lonely, especially initially on this journey. But there are lots of facebook groups out there. There are a lot of other families who are dealing with these challenges, so we get them connected. We actually have a social worker on staff. She speaks English and Spanish, which is really helpful, so she can kind of be that intermediary between a family and whatever resource it is that they need, so she can help find those resources for families.
Speaker 2:A lot of times families will come to us and they'll say you know, I'm just looking for another family. And then we get to hear their story and we realize, wow, they're about to lose their house, or they really need to put food on the table, or they're struggling to just get school supplies for their child at the beginning of the school year, whatever that may be. We then say, hey, we can help with you know, we can help with those extra things that you weren't initially probably calling about, but we can support you if you want us to help you. That is wonderful. We actually had a family who called us. They were looking for care from a specialist for their child and they had to fly, and it was very expensive and that can be a huge barrier.
Speaker 2:A lot of people in the rare disease community do not have a doctor in their area that specializes in what they're going through or what their specific condition is, and so it's really important to get them to the doctor that is researching that condition, if possible, that has the clinical trials that are happening with that condition or just has the most experience with that, has seen a lot of other kiddos with that condition, and so we have several partners in our network that can help fly families from one area of the country to the other we partner with, and that is also, you know, free of cost for the family.
Speaker 2:There's also transportation gift cards for when they hit the ground and they have to take an Uber or something to get. You know it's not just a flight, there's also an Uber to get to the doctor's office and then there are inevitably other costs that they have to stay overnight. You know we partner with Ronald McDonald Houses and other organizations that can help with housing and really make this affordable for families to be able to get the best care that they actually need. You know we go above and beyond, we try to be supportive and we try to listen as much as we can to what the family's going through, because we truly believe that when we listen we're going to hear the family and be able to support them in the ways that they need support in.
Speaker 1:I think it's great that you mentioned all the different moving parts A lot of times. To those of us that don't have a rare kiddo, we don't realize that. Okay, we got you there on a flight, but what's next? What do you need next? What do you need to get there? Because there are a lot of moving parts and there are those things you are going to need once you get to the location. Absolutely.
Speaker 2:I mean just traveling, you know, if you have a wheelchair or you know any sort of extra equipment, you have to think about those things. There are inevitably going to be barriers, and so families do have to really, really, really plan ahead. I think the group that we have amongst 90 advocacy organizations all of the organizations, are willing to step up and help families get whatever they need at that point, and so there are lots of different options. We even have for those families who don't have a diagnosis. We have another organization called the Undiagnosed Diseases Network Foundation that can help families get to the bottom or the root of the issue as close as they can.
Speaker 2:Anyways, sometimes you know there aren't reasons for things or we can't get to the bottom of it or it's too unknown right at this point in time. But genetic testing is evolving and we're finding out more and more and more every single day. So we have partners as well that help with genetic testing to try to find some of those answers to our questions, and I think sometimes those answers are comforting to families. To know the why behind it might not change treatment, or it very well may change treatment for your child. Going forward, you might be more aware that this condition might be associated with a heart condition or something else down the road that we need to be proactive about, and so it's really good to have as much of the picture as you can have for a family, definitely.
Speaker 1:You also played a key role in establishing the parent council for I Acquire clinical trial. Why is it important to have family voices in clinical research and what impact have you seen from this work?
Speaker 2:Yeah, great question. I was actually approached to be on the council shortly after my daughter completed one of the predecessor trials to this one. So I acquired clinical trials a phase three constraint-induced movement therapy trial and it is one of the trials that, since it is a phase three, my daughter participated in the predecessor trials, baby Champs and Champs and so I was familiar with the process. I was also very involved in my daughter's treatment and so they said, hey, will you come on and be the patient voice? And from very, very early on I learned that this wasn't going to be any old trial where there is hierarchy between the professionals. On this trial we were equal partners. All of the parents on the council were equal partners with the researchers and with the therapists, with everyone, and they wanted us at the table in every committee meeting and whenever decisions were being made they wanted to hear our opinion. And that was so important because there were key decisions that were made because of our input, the very first being actually within 24 hours of myself joining myself and another person joining the council. We completely revamped the brochure that was supposed to go out to families, recruiting them for the trial. Initially, when it was sent to us. It was full of so much language that I had a difficult time understanding and I felt like I was pretty knowledgeable on the subject to having had my daughter in the predecessor trials, and so I said it would be really nice if we had some pictures of kiddos in here, if it was laid out in language that families could understand. They were super open, went home and completely redid it and they said this is wonderful. Thank you so much. From there it took off. We've done the assessments, the six month and 12 month assessments for the child. We have actually just concluded our fifth year and enrolled our final patient.
Speaker 2:Even through COVID we were able to help with recruitment. We hit our recruitment numbers, which is absolutely wonderful, even through the challenges of COVID. One of the things that we recommended to the researchers right away was that we utilize social media to our benefit. They were very worried about that because social media there's so much bias. Typically people are telling their experiences. They're saying, yes, this is great or no, this isn't. And what we found is, as a council, we had a response that we could give to families who are inquiring about the trial that was not biased, that gave them the information they needed and got them in contact with the people who could help give them even more information about the trial, so that allowed us to actually eliminate some bias. What we had seen in the trials before that was people saying, oh this is the best, we love this, and they would go on and on and on and on and on for a long time. And we didn't have that with this trial, which is amazing because that does. It limits the bias there, and we were able to help researchers in that way by utilizing social media.
Speaker 2:We created housing pamphlets for families so they knew where to stay, because there were 13 different locations across the United States and families needed they were going to travel. Some families inevitably had to travel Where's the closest Ronald McDonald house? Are there Airbnbs that are affordable? What can we do to make this experience able to be had by as many people as possible? So you know, those are just some of the ways you know we really helped. We actually just had a publication that was published in the American Academy of Pediatrics journal, pediatrics, on the entire process of the parent council and how it got started. What are some things that would change if we were to go back again? And so you know we're really proud of the work that we've done on the council and are now looking forward to working on how the results are disseminated. So we're really excited about that and, you know, looking forward to the next trial.
Speaker 1:This sounds like another incredible resource for those that are in need of it to be able to take that pamphlet, dive in and tweak it how it needs to be. That's incredible.
Speaker 2:Yeah, and I always tell people, you know, clinical trials are the most underutilized resource that we have. When insurance fails you, you have this opportunity to go to a clinical trial site. And it's not just medication trials, right? Yes, those are great as well, but there's also things for, you know speech therapy, physical therapy, occupational therapy all of these different opportunities and a lot of times it is things that researchers really have a question about Is this going to work for this population of people? And sometimes these are the therapies that end up, you know, making it out into the community and really proving to be successful and impactful therapies for patients. You know, I highly highly recommend checking out Clinical Trials. Clinicaltrialsgov is amazing and you can find so many different resources all over the nation. We've done several and we've actually stayed at Ronna McDonald Houses when we do clinical trials.
Speaker 2:I think in my daughter's lifetime we spent well over six months in a Ronna McDonald House. You know, getting my child therapy. She had spinal surgery. We stayed there. Clinical trial work Like there's just. There's so much good that comes from staying at a Ronald McDonald House. And again, you get community, you get people who are experiencing challenges and also successes and, you know, getting over hurdles together, and that's important as well. It's so valuable it's needed. That's important as well. It's so valuable it's needed. It is, it is very needed. It is absolutely needed. I think connection and the right treatment options for people and everyone's going to be different, and so I think you know it's your job as a family to decide what is doable for your family, what is going to be the most impactful for your family, and go from there. I don't think you know everything is going to be perfect for everyone, but it is worth, you know, looking for things that could and that are novel and you know could have significant impact on the health and well-being of your child and your entire family.
Speaker 1:Yes, yes, you contributed to initiatives that focus on improving health care accessibility in rural areas. What are some of the challenges these families face being further away and how are you working to address them, especially with well, really across the board, I would say.
Speaker 2:For certain things like respite care, almost anywhere you go, it's pretty challenging to find respite care, but in rural areas there's even more of a hurdle because there often aren't doctors, hospitals, therapists close by, and so a lot of people just go without. Traveling is expensive, can be very expensive. That is hard. One of the benefits to our Neurology Social Services Network and our Family Support Program is that it doesn't matter where you live. We can connect you to resources. Anywhere in the nation. We can get you financial assistance. There's even telehealth therapy for occupational therapy and things along those lines now, so telehealth is really contributing to being able to make some of these therapies more accessible as well. One of the things that we really saw in rural communities is that they want to, they have to trust you, they want to know that you are there to support them and they want to actually know who you are. Who is it that's providing these services to our families? One of the best things we did is go into the community. Go into the community, have an event for them, provide education along the way, give support while you're there, because when you develop those relationships with people who can get them the things that they are in need of. Relationships are incredibly important and you know we have to get back to you know meeting people where they're at, instead of expecting people to go elsewhere for that care. And we can do that, especially at the Trinerology Foundation. Like I said, having our network if you have a cell phone or a phone attached to a wall, it doesn't matter. We can connect you with other resources that are out there. Now you can ship things anywhere. You can provide financial assistance in a variety of different ways. We're able to get into those areas a little bit more and connect those people to a larger community.
Speaker 2:The other thing, as I said, about going into the community, you're kind of pulling people out of their houses and meeting other people in the community that have similar needs. When you do that, you're creating community within the community. That is important. Making sure that kids with unique needs are included in sports activities or recreational activities, that they're going to these after-school events, that they're made accessible for all families that's really, really important. I think going into the communities is number one. I know that's hard for some people, but I think people want to be around other people ultimately, and they want to feel connected to people. I think it's kind of mostly in our nature to want to find other people who are experiencing similar things. If we can get into communities and show them that we understand their challenges, we have solutions for those challenges. That's even better for them.
Speaker 1:Could you explain, because I'm sure there's listeners out here that are not familiar with some of the terms that I have discussed, like respite care? Would you mind talking about what these terms mean? Yeah, sure.
Speaker 2:So respite care is essentially someone who comes into your home, or there are some organizations where you can drop your child off for a period of time so that someone else can care for your child and give you a break. Someone else can care for your child and give you a break. We as human beings especially if we're dealing with trauma or things that are really challenging, over and over and over again, it starts to impact our mental health. Sometimes, getting a couple hours of a break is super, super beneficial and can reset you. That's really the point of respite care. My daughter has an amazing respite care provider that comes in and not only does she give us a break, but she also teaches my daughter different skills. She'll bring her out into the community. My daughter is really fearful of things that are high, like buildings that have high ceilings, so she'll take her to those buildings and help her cope and work through some of those things that she is fearful of. It can really help your family holistically Help the child learn new skills, but also help you get a breather. Maybe you want to go get something done. You want to go to the grocery store by yourself? You can do that when you have a respite care provider.
Speaker 2:Let's see some of the other terms. I may have said CIMT, that's constraint induced movement therapy. That is when you actually cast your non-affected side to force you to use your affected side. That is a form of therapy that has shown to kind of rewire the brain and really get kids to start utilizing their side that is more difficult for them to use than the other. That's common with hemiparesis, when one side of your body is weaker than the other. What other terms have I said?
Speaker 2:I know we've talked a little bit about clinical trials. Just most of the time, participating in clinical trials it's really where a researcher has a hypothesis. They want to test it, and see is what I think. I suspect this may happen, but I want to test it and I want to see, and so you know, just for an example, in my daughter one of my daughter's therapies they were testing to see. You know, if they casted one hand, what is the progress they would make in the right hand. One of the things they actually found, though, is that it actually improved the left hand as well, the one that was casted. So the the non-affected side, and so mind-blowing Something that came out of research that they never anticipated happening. They didn't predict that, but they were really, really surprised by those findings and it's encouraging and exciting to let those things happen. But you just never know with clinical trials, you don't know what the outcome is going to be, and so it is a test. It is simply a test.
Speaker 2:A lot of these tests have good thoughts behind them. They're not just random. They don't come out of nowhere. A lot of times there are predecessor trials that lead up to that, up to that clinical trial, and so they want to try and see the effectiveness of their hypothesis and whether you know it is going to be beneficial if they release that treatment option to the entire community. So it's exciting to be a part of a clinical trial.
Speaker 2:One of the things you do have to think about is the cost associated with it. Even though they are free most of the time, there are costs associated as far as taking off time from work or travel time. Those kinds of things that you have to think about, and these are actually things that researchers are getting a lot better about thinking about and are compensating families for their time. Many are, and so that's a good sign because they value the time of the patients. That's important to note, because time is limited, it's always hard to come by time. It's nice when someone does reimburse you for the time it takes, but there can be benefits, obviously to the patient as well, if the therapy is effective or the treatment option is effective.
Speaker 1:Exactly Some of the terms and some of the programs, of course, we're not going to be familiar with because, hello, we didn't have a rare kiddo or a rare condition. Exactly In the work that you do, do you sit down with these families and explain to them okay, this is what the illness is. We're going to learn more and these are what your options are within the programs.
Speaker 2:We do Absolutely. One of the other things that we have created and we're actually updating and adding a lot more conditions is our disorder directory. It has a ton of different disorders in there and it has signs, symptoms, therapy that may be recommended. It has advocacy organizations that you can get connected with as well, so it is one of the first things that comes up when you Google a condition. It'll have our disorder directory on there. We take a lot of pride in that, because we actually saw someone who posted on social media a printout of our disorder directory on there. We take a lot of pride in that because we actually saw someone who posted on social media a printout of our disorder directory page and said this is where I learned about my child's condition, and we were like yes, thank you, like we're so happy that you utilized that resource for your child and we hope that that's the beginning for you, right?
Speaker 2:There's even more information out there, and the thing about rare conditions is that they're ever-changing, they're evolving, we're finding out more and more information, we're getting more treatment options, and so it's really important to be connected to these advocacy organizations because oftentimes they're working directly with the researchers and they know the best treatments.
Speaker 2:So, even if you just get on their newsletter, you'll be up to date on some of the things that are happening in your space and be able to take advantage of some of the new therapies and treatments that are available for your family and, if nothing else, you're also able to find support groups and you're able to find other people who you can connect with as well. So it's really important, I think, to get as much information, to fill yourself with as much knowledge about the condition and also do what you can do. I think it's unfair to say because it says here that I can do this therapy and that therapy and that therapy that you have to do it all. It can be overwhelming and that's not good for anyone, right? So there are times when we have to step back and go what can I do? Right now?
Speaker 1:I'm going to do the thing that I can do right now, and later I'll do something maybe different, but that's okay, there's services within the organization that support the families, but then you also are aware of these other organizations that they can get involved with that probably offer family services. Now you're looking at all these options of support and support groups, like you said.
Speaker 2:Yeah, absolutely. We have a partner called Courageous Parents Network and they have a wonderful resource called Neurojourney. That's another resource that we really guide people to, because it is an extensive look at different conditions from a lot of different perspectives. So a gastro perspective, so diet, how do things move through your body? It can be from just like a schooling perspective too right, does it impact your eyes? Does it impact your learning Cognition, what is it that it impacts? And Neurojourney does a great job of breaking down different conditions so that it's understandable to the average person in multiple languages, which is fantastic as well.
Speaker 2:We have the Pediatric Epilepsy Surgery Alliance as a partner and they have and I'm saying this as a former intervention specialist or special education teacher they have one of the most incredible school resources I have ever seen. If you are going through the IEP process, if your child is on an IEP or gets additional instruction from a speech pathologist or an occupational therapist or a physical therapist at school or needs academic testing, whatever that may be they have you set with their resource. I mean, they literally will tell you what goals that could potentially help your child. They really help you understand the process and that's wonderful. Your child doesn't have to have epilepsy surgery to benefit from their school resource, so I highly recommend going to them for anything educational. They have a wonderful wealth of resources on their website.
Speaker 1:Thank you for sharing about that. We're going to talk about patient engagement Now. You serve on the FDA's Patient Engagement Collaborative and Advisory Committee positions that play such a critical role in bridging the gap between families and healthcare systems. What insights have you brought to these platforms and how do they influence change?
Speaker 2:Great question. So whenever you have something like a patient engagement collaborative or an advisory council, you're really looking for the insights from patients, their challenges, their struggles, things that they really want to make. They want someone to help them make improvements in certain areas, and so I think what the FDA has done with some of these collaboratives is they have allowed patients to have a seat at the table to voice their concerns, to say, hey, we really would like to see this happen or hey, we can work together in these ways. One of the things that I presented on through the Patient Engagement Collaborative is decentralized clinical trials. That is a lot. It basically just means a clinical trial that is not housed in a traditional location like a hospital. So, for instance, maybe the therapist comes to your house and the therapy is virtual and it's not in that hospital setting. So that's decentralized. It's not always going to occur in the same location. So that's one of the things. The other thing that is really neat about these collaboratives is that different professionals from different areas join together and share their experiences and find ways that they can collaborate together to move the needle forward. I think whenever we're working together we get further. When we are just kind of siloed into our own individual disease states. We move a lot slower, we don't go as fast. So the more commonalities we can find amongst each other, the more we're going to be able to make progress, to make change that's impactful for patients.
Speaker 2:So, you know, I think it's really important what the FDA has done in creating these councils and PCORI. They do a lot as well patient-centered, a lot of patient-centered clinical trial work to really move the needle forward and have patients with lived experience, people with lived experience engaged in, you know, clinical trials and in, you know, making treatments and therapies that patients want and that patients need, instead of just looking at it from a research side and saying, what do the researchers want to work on today? Right, it's really involving the people that are going to be impacted by it, because if those people don't care about that therapy that you're researching, it's not going to be utilized. It's not going to be utilized, it's not going to be beneficial. So we've got to put things out there that make a difference for patients.
Speaker 2:I think you know it's really important. It was really important for me to also hear from the FDA how their system works, because it's hard to understand sometimes, being a patient that there are limitations amongst you know some of these organizations and there are ways that we can work together to move past some of these limitations, or ways that we can be creative together to get around some of these limitations. Right, but whenever we have the systems and the people working together, that's when the real change happens. It can't happen separately. It has to happen together in order to make a big impact for the community.
Speaker 1:Yes, absolutely, I could not have said it any better Edited parenting and balance With all of your advocacy, work and professional commitments. How do you balance this with being present for your family, especially your daughters?
Speaker 2:Yes, this is difficult, very, very difficult, especially because, as I said earlier, my life and my work are kind of intertwined and some people say that's not healthy. It is healthy for me because I feel like I'm doing something to help my family and families like mine. So for me it fuels me. It really does. It makes me work really hard when I'm at work. But I have had to get a lot of coaching from my bosses about stepping away. I am so fortunate to work at an organization that talks the talk and walks the walk as far as taking care of yourself. If my daughter's in the hospital or there's something going on that's big or impactful, they literally say step away, step away, take care of yourself. They mean it, they live by that and follow that, so they model that as well.
Speaker 2:I've now worked at a foundation for three years and I for the first time checked out during our two-week shutdown at the end of the year. It took me that long to learn to just check out for a period of time and I spent more time playing games with my children and puzzles. We love to do puzzles and different things, making memories, and so I had to learn to compartmentalize a little bit better rather than it all weaving in and out together At our work. We have time to volunteer. If I need to volunteer at my daughter's school for a party or something I can do that, I can step away. I'm supported to do those things. I think employers need to know their employees need to know what they have going on and they need to provide opportunities for people to take care of themselves. If you're an adult, I think you can manage that right. You can decide for yourself when you need to walk away and when you're just giving your all and you are good to go right. But sometimes getting that rest and that rejuvenation is gonna make you do better work. That's really, really important and our leaders truly do believe that at our organization. That really helps.
Speaker 2:With my personal life and taking care of my daughters. There are times where I've had to work a little bit. Later at night, when we have educational courses, my daughters will sometimes come in and sit and listen. I think it has opened their eyes even more so that there are people like them out there in this world, that not everyone has a perfect life and that we all have challenges. We all have struggles and we can do something about it too. There are resources, there are people to connect with that can help us live a fuller life and really be the best people that we can be.
Speaker 2:I do. I talk about my work with them. I invite them in to listen to the things that I do, because I think I want them to do something that is going to benefit the world. I want them to help people who are like them and different from them. I think the best way to do that is to model it for them. And what does that mean and what does that look like for people? If I can model it, maybe they will follow in my footsteps a little bit and help people, and maybe they'll go a different path, and that's fine too. I just want them to be kind people that are caring about all kinds of people.
Speaker 1:It sounds like an incredible place to work. You get to help people, you get to help your daughters and you get to show them what it's like to be an amazing support system to others.
Speaker 2:Yes, there's beauty in that there is, and I think everyone needs someone that they can lean on. I want them to realize it's okay to lean on other people, because we can't do everything alone. I don't want them to be isolated. I want them to make connections and I want them to find support that they need when they need it. So I try to model that for them. I try to live that for them, hopefully it works.
Speaker 1:Catch up with me in 10 years. It's so true. I think that most parents feel that way, don't we?
Speaker 2:Yes, for sure.
Speaker 1:For families who might be listening today. What advice, what encouragement would you offer as they navigate their own healthcare journeys and advocacy paths, whether it be for themselves or for their children?
Speaker 2:I think one of the things that I have learned along the way is to just take one step at a time. So a lot of times it's easy to look at the big picture and get really overwhelmed and think what's going to happen. You know, 20 years from now with my child, and I think we have to stay in the here and now. We have to make sure that what we're doing now will support them moving forward. But we can't get overwhelmed by this is coming up and this milestone and they're not going to meet this or that.
Speaker 2:Love them in the moment. Love them for who they are now and find the positive in who they are right now. And also give yourself grace, because you're not going to do everything perfectly at every step of the way and you shouldn't second guess yourself. Just keep moving one step forward. Do the next right thing that you need to do in the moment and give yourself grace along the way. You're doing the best that you can and your child is going to be okay. Your child is going to be all right. We can't fret about you know what 20 years brings.
Speaker 1:You believe in making every moment count and leaving a positive impact that shows, through everything that you say, what continues to fuel your passion and drive for this work.
Speaker 2:Without a doubt it's my children. I think you know I've always had that passion. Obviously I went into special education initially, but helping other people so that they don't experience the same challenges that we've experienced. If I can make it better for the next person, then whatever challenge I went through was worth it because someone else can benefit from it. So for me it is making things better for those around me. If I can teach someone something that I've learned along the way, why not? I want someone else to have that same information that I had and use it to work for their family if it helps along the way.
Speaker 1:This is the fun and the personal. On a lighter note, I know you love reading. Do you have a favorite book recommendation, either for learning or just purely for pleasure?
Speaker 2:I have one that I just read that was so fascinating to me. It is actually called Brain on Fire. It is about this reporter for the Post who had a rare condition that I don't want to give away too much, but the condition impacted her and completely changed who she was, and it took doctors quite some time to figure it out to the point she almost died but didn't, and she lived to tell about it and they were able to get treatment for her. But that book is wonderful. And then just another one that's not in the neurology space that I have loved is actually a series. Are the Hunger Games? Totally off, but I just think that is a fascinating concept and just kept me on my toes at all times. So I love to read. So I have lots of books that are, you know, are good ones that I've read in the past, but those are the ones that kind of are on top of my mind right now.
Speaker 1:Those are some good ones. I love to read too. I think I love all kinds of books. You're going to find me reading everything from a adventure to romance to something more serious. I actually just looked up Brain on Fire because I felt it sounded familiar, and it does, because it's actually a movie too yes, yes, I have not seen the movie yet, so I'm really excited about that, but it's.
Speaker 2:I'm really really excited to watch the movie. I hope the movie is really, really good. I have a love-hate relationship with watching movies after you've read the book, or vice versa, I don't know. I always end up, I think, liking the books more.
Speaker 1:We tend to want to kind of pick apart the movie afterwards and be like, okay, you forgot this, this and this, this was important. Why did you destroy this Absolutely?
Speaker 2:Yes, absolutely Good recommendations recommendations, I think.
Speaker 1:For anyone that's listening to this, I'm going to give you a little snippet. Here's the summary. It says a rare autoimmune disorder popularized by the autobiography movie brain on fire is triggered by an attack on the mda receptors. The disease occurs when antibodies attack mda receptors in the brain, leading to memory loss, intellectual challenges or changes, seizures and even death.
Speaker 2:Yes, it's wild. She was completely typical and then transformed into a completely different person before she had treatment. So it is absolutely unbelievable. It just goes to show how truly remarkable the body is and also how cool our healthcare professionals are for being able to figure out something so rare in a timely way, you know, in a timely manner. So she got the help that she needed quickly and that's what's important she lived to tell the story.
Speaker 1:The story is mind boggling, yes it is Absolutely.
Speaker 2:You will hear some wild things that she did during that time where she doesn't remember an entire month of her life and tore her family apart. So you can really relate to as a caregiver, because watching your child go through something so horrific and at some points not having medical professionals believe you is really challenging. It can be devastating. It goes through all of that and it's fascinating. Great book. Highly recommend it and I'm going to watch the movies. Make sure you let me know what you think, okay, I will.
Speaker 1:Well, kim, it's been an honor to have you here and to share all of your expertise, along with some of your personal journey. I feel like we barely dipped our toes into the waters and I'm sure we're going to have to have you back to discuss more. What I want to leave listeners with is don't be afraid to reach out. Don't be afraid to reach out and ask some questions and just say I'm drowning right now and I need some help. I know that Kim would be happy to talk with you and help you.
Speaker 2:Absolutely yeah. Reach out anytime. You can email us at programs at childneurologyfoundationorg. I check that every single day, so feel free to reach out there. You can also go to our website and fill out an assistance request form. If you need support or help, we're happy to help you. That's what we do, that's what fuels us, so give us fuel.
Speaker 1:Yes, now remember, listeners, that your story matters, your voice matters and together we are stronger. Until next time, don't forget your spoon.
