As the semester is quickly coming to a close for many high schools and colleges across the country, Peer 2 Peer (P2P) is getting up and running in a number of affiliates across the country. The goal of P2P is based in the idea that adolescents living with epilepsy are going through a tremendous amount of transitions during these years and with some support from each other we can all not only face these transitions and get through them, but we can have adventures beyond our wildest dreams.
I look back on my freshmen year of college now, and I never thought that I would be taking road trips and running marathons. I knew it would be a blast, and that I would meet incredible people, but these last four years have nothing short of awesome. The one facet that I think was missing was the peer support that I believe P2P can offer. I knew having epilepsy would affect my college years, but if I had the support and friends that I have now with the National Youth Council earlier, I think I would have begin to adventure much sooner. These past two years thanks to the love and support of these close friends, I have plunged into some pretty wonderful opportunities. In fact, I traveled so much this semester, that this past week was the first week that I was actually home for seven days in a row (do not worry, I still am pulling a 4.0 semester). I have been at numerous conferences, visiting friends, traveling with the Saint Louis University Pep Band for March Madness (Go Billikens!), and just having a blast. As a freshmen, with a lot of concerns about the negative effects of epilepsy on my independence, I never would have dreamed of this semester ever happening.
I encourage those living in the Central & South Texas, Florida, Northeastern New York, Greater Cincinnati and Columbus-Cincinnati, and Greater Cincinnati and Columbus - Columbus regions to please reach out if you are a high school or college student looking to have a great time and meets some new people! Having a group to bounce ideas off and challenge you is great way to make you face some of your fears and just explore! Take the first step and become a part of this year's P2P groups adventure! The greatest regrets in life come from the opportunities we choose to ignore!
Happy end of the semester!
Maureen
Monday, April 21, 2014
Monday, April 14, 2014
A Little Bit of the Backstory
Hi y'all!
My name is Abby and I first became involved with the epilepsy foundation several years ago. You might ask why I became involved though. Well, I was diagnosed with juvenile myoclonic epilepsy my freshman year of high school. I had no idea what epilepsy was. I had never experienced a grand mal seizure. My first thought was that everyone had their something and this was my something. I had no idea what I was in for.
Quickly, I started having grand mal seizures and I was just trying to figure out my body and all the changes I was going through. I had seizures multiple times a week and even several times in a day. I tried multiple medicines over this time and had zero luck. It was discouraging and this was when my mom began reaching out to our local affiliate for support and to gain more knowledge. Our motto was always that your doctor can only do so much. The more knowledge we have the more we could work as a team to help get me healthy! My senior year of high school in April was my first year seizure free.
It was a long few years with ups and downs but I started to see the light at the end of the tunnel. I realized that I could use all of my experiences to help others who are going through those struggles I had dealt with. This was when I really got involved and started working with my local hospital and affiliate to connect with other young people. I wanted them to know that no matter what they might be struggling with right now there was that light for them too. They could overcome and do anything they put their minds to.
Had it not been for my parents supporting me and telling me this I don't know I would be where I am now. I recently graduated college and now have a job doing what I love. This April marks my 5th year being seizure free. I have been so blessed in these past few years working with the National Youth Council. My goals are just to inspire and encourage young people not to let their diagnosis of epilepsy to define them. Had I not had people push me to believe I was capable of anything I might not be where I am today. It has not always been easy to push through, but I am proud that I never gave in to the struggles.
Though every person with epilepsy has different experiences, we are all connected in a way that is almost indescribable. I wouldn't trade my diagnosis for anything because it has given me the ability to meet amazing people and make a difference. Some people may not understand how I could say that, but I have met many people through the epilepsy foundation who totally understand! I look forward to continuing my work with the epilepsy foundation and helping young people take control of their diagnosis. Hopefully, we can not only help people who are diagnosed but those who know nothing about epilepsy.
It is so important that not only do we help those with epilepsy learn more and do well but that we educate others. I had no idea what epilepsy was. I was thankfully young enough that I did not have any stigmas about it. I was just oblivious to it period! I want to change not only that but the stigmas that come along with it! There is so much to do and be done and that is why I became involved. I can't rely on others to do a job so important to me and so many others. I realized we all must do our part.
Having been blessed with my health for these past five years I have realized that I can do so much to help raise awareness and get rid of the stigmas surrounding the word epilepsy. Also, I can connect with so many amazing people. My profession is a elementary school teacher and I am truly someone who loves teaching. That is why I became involved. I knew I could teach, inspire, and educate people. All of those are what my day-to-day job entail. I hope this helps you know a little bit about me and why I am so connected to this cause. Stay tuned for more from me and several other great people with different reasons for being involved but one common goal! We want to educate and inspire people all while learning new things ourselves!
Your friend,
Abby Frame
My name is Abby and I first became involved with the epilepsy foundation several years ago. You might ask why I became involved though. Well, I was diagnosed with juvenile myoclonic epilepsy my freshman year of high school. I had no idea what epilepsy was. I had never experienced a grand mal seizure. My first thought was that everyone had their something and this was my something. I had no idea what I was in for.
Quickly, I started having grand mal seizures and I was just trying to figure out my body and all the changes I was going through. I had seizures multiple times a week and even several times in a day. I tried multiple medicines over this time and had zero luck. It was discouraging and this was when my mom began reaching out to our local affiliate for support and to gain more knowledge. Our motto was always that your doctor can only do so much. The more knowledge we have the more we could work as a team to help get me healthy! My senior year of high school in April was my first year seizure free.
It was a long few years with ups and downs but I started to see the light at the end of the tunnel. I realized that I could use all of my experiences to help others who are going through those struggles I had dealt with. This was when I really got involved and started working with my local hospital and affiliate to connect with other young people. I wanted them to know that no matter what they might be struggling with right now there was that light for them too. They could overcome and do anything they put their minds to.
Had it not been for my parents supporting me and telling me this I don't know I would be where I am now. I recently graduated college and now have a job doing what I love. This April marks my 5th year being seizure free. I have been so blessed in these past few years working with the National Youth Council. My goals are just to inspire and encourage young people not to let their diagnosis of epilepsy to define them. Had I not had people push me to believe I was capable of anything I might not be where I am today. It has not always been easy to push through, but I am proud that I never gave in to the struggles.
Though every person with epilepsy has different experiences, we are all connected in a way that is almost indescribable. I wouldn't trade my diagnosis for anything because it has given me the ability to meet amazing people and make a difference. Some people may not understand how I could say that, but I have met many people through the epilepsy foundation who totally understand! I look forward to continuing my work with the epilepsy foundation and helping young people take control of their diagnosis. Hopefully, we can not only help people who are diagnosed but those who know nothing about epilepsy.
It is so important that not only do we help those with epilepsy learn more and do well but that we educate others. I had no idea what epilepsy was. I was thankfully young enough that I did not have any stigmas about it. I was just oblivious to it period! I want to change not only that but the stigmas that come along with it! There is so much to do and be done and that is why I became involved. I can't rely on others to do a job so important to me and so many others. I realized we all must do our part.
Having been blessed with my health for these past five years I have realized that I can do so much to help raise awareness and get rid of the stigmas surrounding the word epilepsy. Also, I can connect with so many amazing people. My profession is a elementary school teacher and I am truly someone who loves teaching. That is why I became involved. I knew I could teach, inspire, and educate people. All of those are what my day-to-day job entail. I hope this helps you know a little bit about me and why I am so connected to this cause. Stay tuned for more from me and several other great people with different reasons for being involved but one common goal! We want to educate and inspire people all while learning new things ourselves!
Your friend,
Abby Frame
Sunday, April 6, 2014
Words from Steve
Hello All!
My name is Steven Mszyco and I am a member of the National Youth Council. Here’s a little backstory about how I became connected with epilepsy….
Growing up I had very little exposure to epilepsy or any condition that required one to take medications. In elementary school through junior high, I do not recall knowing anyone with epilepsy or ever witnessing a seizure (most likely because no one TALKED ABOUT IT). I can say that when I came across the word ‘epilepsy’ it always seemed unique to me for a reason I cannot completely explain. I think it is because ‘eh-pill-ehp-see’ doesn’t sound like any other word in the English language and certainly shares no similarities with the word ‘seizure’ other than by definition. Thus, it had been a mystery to me; a puzzle persay. And I am a person that finds great joy in solving puzzles. As strange as it seems, I feel that my view of the word itself was the beginning of a lifelong connection.
In high school, my younger brother befriended a kid up the street who experienced occasional tonic-clonic seizures. They’d often play in the backyard or in the house, and I quickly realized that this kid seemed completely normal. So what was all this hub-bub about medication and seizures? To be honest, at the time I didn’t care. After my brother witnessed one of his seizures, I asked my parents for more information about epilepsy, and I got vague answers. Basically they told me to get his mom or dad if I saw him fall down and move abnormally… but fortunately that day never came.
College is where everything came together. I had decided that my love of problem-solving would best be suited with a career in medicine. My university’s neuroscience program happened to be one of the best in the country and my experience with an introductory course in neuroscience immediately got me hooked. But it wasn’t until I met Jordan Hinds, sitting at a table labeled “Epilepsy Foundation Youth Council” in my school’s volunteer fair, that epilepsy once again re-entered my life. Here was a group that openly TALKED ABOUT IT. It was in this way and only through this way that I came to learn more about youth living with epilepsy. As I researched the science of epilepsy in school, I also became aware of the need for youth support, advocacy and education while volunteering for the Pittsburgh’s Epilepsy Foundation Youth Council. I realized that the program had an amazing cause and desperately needed help regarding leadership and longevity. These were two pillars that I felt I could offer.
As I became more involved with Youth Council, I certainly became more attached to epilepsy. I came to understand that making a difference all came down to this attachment. I began to participate in research in pediatric epilepsy around this time as well. Our Youth Council was extremely successful in starting up education and advocacy projects, providing a voice for the challenges that youth with epilepsy face, giving support to those that needed it, and overall growing as a council. I even got to see my neighbor at many of the Epilepsy Foundation events that we volunteered in. We accomplished so much in those couple years that it remains a constant inspiration to me as to what a group of passionate like-minded people can achieve in the right environment. Needless to say, there were many difficulties along the way, but I hardly remember them in light of the strides forward that we made.
Things were certainly good. But not all good things last. Toward the end of my college career some major changes happened. Emily, one of our most dedicated leaders, moved away from Pittsburgh and became involved in National YC. Then Bridget, our President, had to move away as well. Two of the brightest and most passionate leaders in our Youth Council were gone. Nonetheless, we pushed on and were still able to move forward with various projects. However, the day finally came when the guy in charge had to move on with his career. Jordan, the one that introduced me to Youth Council and our affiliate leader, had to leave as well. I knew I had to step up and that is exactly what I tried my best to do. I made sure our Youth Council stayed active and continued with projects. We were even able to reach out and recruit new members.
When I had to leave Pittsburgh for medical school to follow my dream of becoming a neurologist, I realized that my attachment with epilepsy and the Epilepsy Foundation had many years still ahead of it. It was far from over because I was lucky enough to become a part of the National Youth Council and make a difference on a larger scale. I realize that I left my local Youth Council back in Pittsburgh in a bit of a struggling state. But I found out through my work at National that many regions don’t have ANY means of youth support. Also, I realized that internationally the stigma can be even worse, and it was about time to do something about that as well. Of course, National YC has been working on developing some MAJOR projects including YC networking, our SynApps campaign, Peer2Peer affiliate youth training, and much more.
So I guess you could say my connection with epilepsy is pretty complex. I still want to figure out the science behind it via research and problem-solving. I still want to help those dealing with refractory seizures via my career as a neurologist. I still want to help others find well-organized Youth Councils in their region for support and friendships. And I still want to work to eliminate the stigma both in the United States and throughout the world. Overall, I’d say my favorite part of being connected with epilepsy is getting to witness the astonishing inspiration I see in the lives of others tied in to the same great cause.
“A THOUSAND MILE JOURNEY BEGINS WITH A SINGLE STEP”
I’ve made some amazing friends on this journey, and I still feel like the journey is only beginning. As you may have guessed by now, I do not have epilepsy. And I’m sure you understand that those without epilepsy, especially your friends, will want to help you achieve your goals. Whether its opening up about your epilepsy, starting a youth council, dealing with bullying, or not being able to drive, etc… there will ALWAYS be more people to help you up than pull you down. And I think that is a mantra worth remembering.
Feel free to comment below with any questions for me.
Thursday, March 13, 2014
Updates and News
Early last month the National Youth Council met to discuss a wide variety of things on our agenda. A few of those were our future goals, the new comic book, and our local youth council outreach program. All of these things were on the fore front of every members minds when we arrived to the meeting. We were determined as a council to make great strides forward in all of these areas, and to formulate a plan of action for when we left the meeting. I can happily say that we accomplished so much at our meeting and left with an action plan that now we are trying to implement.
Our future goals were something that as a council we wanted to get everyone's input on. Where did we want to be this time next year? When we we're asked that many of us agreed that we needed to form a larger presence on the internet as a council. We want for young people to see and hear about what we are doing. Not only that, but what in general is going on in our lives and some of our struggles. That is where our blog comes into play. Not only can we update everyone on what's going on, but post things relevant to the youth living with epilepsy or dealing with it on some level. Well, we are making great strides in this area because our blog link is now on the national website! You can now stay tuned for weekly posts by a different member of the council. For every member this is a great stride in the right direction!
Next, our task was to work on what we envisioned the new and amazing comic book to contain. We reviewed the work that had been done so far, and all of us were so proud to see an idea formulated a year ago come to life. We planned out how we saw the story going, and mainly just talked about how cool it was! We are excited and hoping to give everyone more of a sneak peek at the walk as to what you can be expecting! Keep your eyes open if you will be attending, and if not stay tuned on the website for the online versions. We will try to post reminders as well!
Finally, we discussed how to connect local youth councils across the boarders. We feel that at whatever level of success your youth council might be at they can help other councils or get help and ideas. If you are struggling as a youth council or do not know where to even start one what better help then a successful youth council's advice. We want to know what makes a youth council successful and the different activities and programs youth councils have going on! Our end goal after reaching out and getting some statistics is to create a place where all affiliates can communicate and get information about other affiliates youth councils. We feel we all can reach the most success when we unite to help each other. Our overarching goal is to spread awareness and help those living with or dealing with epilepsy. It only benefits us if we do it as united as possible!
As you can see we set some high goals, but we are making great strides towards being successful and reaching them! We have so many additional things we look forward to doing in the future, but we want to start with these things and accomplish them first. We are so proud to have a blog where we feel we can really reach people. As an adult, I am so excited for the release date of the comic book! It is so cool and something we can all connect to. Overall, we are just pumped for what the future holds. Stay tuned folks, great things are on the horizon!
Your friend,
Abby Frame
Our future goals were something that as a council we wanted to get everyone's input on. Where did we want to be this time next year? When we we're asked that many of us agreed that we needed to form a larger presence on the internet as a council. We want for young people to see and hear about what we are doing. Not only that, but what in general is going on in our lives and some of our struggles. That is where our blog comes into play. Not only can we update everyone on what's going on, but post things relevant to the youth living with epilepsy or dealing with it on some level. Well, we are making great strides in this area because our blog link is now on the national website! You can now stay tuned for weekly posts by a different member of the council. For every member this is a great stride in the right direction!
Next, our task was to work on what we envisioned the new and amazing comic book to contain. We reviewed the work that had been done so far, and all of us were so proud to see an idea formulated a year ago come to life. We planned out how we saw the story going, and mainly just talked about how cool it was! We are excited and hoping to give everyone more of a sneak peek at the walk as to what you can be expecting! Keep your eyes open if you will be attending, and if not stay tuned on the website for the online versions. We will try to post reminders as well!
Finally, we discussed how to connect local youth councils across the boarders. We feel that at whatever level of success your youth council might be at they can help other councils or get help and ideas. If you are struggling as a youth council or do not know where to even start one what better help then a successful youth council's advice. We want to know what makes a youth council successful and the different activities and programs youth councils have going on! Our end goal after reaching out and getting some statistics is to create a place where all affiliates can communicate and get information about other affiliates youth councils. We feel we all can reach the most success when we unite to help each other. Our overarching goal is to spread awareness and help those living with or dealing with epilepsy. It only benefits us if we do it as united as possible!
As you can see we set some high goals, but we are making great strides towards being successful and reaching them! We have so many additional things we look forward to doing in the future, but we want to start with these things and accomplish them first. We are so proud to have a blog where we feel we can really reach people. As an adult, I am so excited for the release date of the comic book! It is so cool and something we can all connect to. Overall, we are just pumped for what the future holds. Stay tuned folks, great things are on the horizon!
Your friend,
Abby Frame
Thursday, January 16, 2014
Second Semester Check In
Second semester for high schools and colleges are off to a running start. I am already deep in homework and immersed in my new studies; however, it is time for that usual check in to see if I am moving in the direction that is going to make me happy.
After being diagnosed with epilepsy, I struggled to take my own path towards happiness. I had a diagnosis which made me feel incredibly separate from the rest of the world. Many days I worried that I would drop in front of everyone and seize, losing time and more independence. I cried often about not being able to drive or to have my own children. To make up for it, I tried to fit in with the rest of the world in every way possible. This momentarily provide comfort to the struggles that I was facing every day; yet, it was not enough to compensate for the dependence that epilepsy brought to my life.
Somewhere in my second semester of freshmen year of college while working on an assignment for a course, I started to put together the puzzle that was happiness and peace. with my life and my diagnosis. I took a writing course that spring, and one of the assignments I had to complete include filling a two hundred page journal. Sometimes my professor would give us prompts to help us write. Other times, he just told us to find a wonderful cafe and just be in the moment. The writing would flow, if we could just release.
Somewhere between the various cafes I found myself occupying and many cups of tea, I found the crumbs to follow. I begin to recognize the little bits of life which made me instantly happy. Talking to my then boyfriend (now fiance) could in a single heartbeat improve my day. Walking up and down campus breathing the fresh air calmed my nerves. Songs magically improved my mood. Volunteering took away my worries. All the happiness I could have ever wanted had been always right in front of me. It just took writing it down on the page and seeing it with my eyes to believe it.
Now, I still write in journals like that one freshmen year, but I have a different take on it. I no longer have to see it to believe it. The simple trick to finding that happiness in spite of a disability, setback, diagnosis, or whatever is bothering you in life is to simple believe it. Once you believe it, you will see it.
So every new spring semester since freshmen year, I check in with myself to make sure that I am still in focus with those simple graces in life which bless me every day. As of today, I am wrapping up my senior year, have made sometime to volunteer each week, run to keep my mind at peace, and make sure I spent at least a bit of each day with the people I hold most dear. I could not ask for a more beautiful start to 2014.
After being diagnosed with epilepsy, I struggled to take my own path towards happiness. I had a diagnosis which made me feel incredibly separate from the rest of the world. Many days I worried that I would drop in front of everyone and seize, losing time and more independence. I cried often about not being able to drive or to have my own children. To make up for it, I tried to fit in with the rest of the world in every way possible. This momentarily provide comfort to the struggles that I was facing every day; yet, it was not enough to compensate for the dependence that epilepsy brought to my life.
Somewhere in my second semester of freshmen year of college while working on an assignment for a course, I started to put together the puzzle that was happiness and peace. with my life and my diagnosis. I took a writing course that spring, and one of the assignments I had to complete include filling a two hundred page journal. Sometimes my professor would give us prompts to help us write. Other times, he just told us to find a wonderful cafe and just be in the moment. The writing would flow, if we could just release.
Somewhere between the various cafes I found myself occupying and many cups of tea, I found the crumbs to follow. I begin to recognize the little bits of life which made me instantly happy. Talking to my then boyfriend (now fiance) could in a single heartbeat improve my day. Walking up and down campus breathing the fresh air calmed my nerves. Songs magically improved my mood. Volunteering took away my worries. All the happiness I could have ever wanted had been always right in front of me. It just took writing it down on the page and seeing it with my eyes to believe it.
Now, I still write in journals like that one freshmen year, but I have a different take on it. I no longer have to see it to believe it. The simple trick to finding that happiness in spite of a disability, setback, diagnosis, or whatever is bothering you in life is to simple believe it. Once you believe it, you will see it.
So every new spring semester since freshmen year, I check in with myself to make sure that I am still in focus with those simple graces in life which bless me every day. As of today, I am wrapping up my senior year, have made sometime to volunteer each week, run to keep my mind at peace, and make sure I spent at least a bit of each day with the people I hold most dear. I could not ask for a more beautiful start to 2014.
Monday, January 6, 2014
What a Ride!
If you asked me 5 years ago I would have said that soccer is my life and I imagine my college life being centered around soccer. At the time I was recruited to play soccer for Towson University, I was SO pumped and I thought everything was lined up perfectly. The day before signing day I was told I could not play soccer again due to my seizures. At this point in time I was devastated. I thought there was nothing worse in the world then to take soccer away from my life. Now, a semester away from graduating, I can say that I was crazy. Yeah, of course it would have be awesome to see what my soccer college life would have held for me, but I believe everything happens for a reason, and I definitely would not have been in my special education program at Arcadia University, if it weren't for my Epilepsy. Throughout this ride I learned that above all else, special education and working with children with disabilities is my dire love and passion in my life.
As I approach the ending, as well as the beginning, of a new chapter in my life I feel as though I can finally look back at my Epilepsy and really capture it and call it my own. After all it is my story. It's very much a part of me. The relationships I have made and deepened, the passions I have found, the experiences and journeys that I endured, all stemmed from my own path, a path that was unwillingly changed, I don't want to say for the better, but certainly for a thrilling ride that I love to call my own ride. I am now graduating with a duel certification in Early Childhood Elementary Education and Special Education, both of which allow me to go after my deep passion of working with children with disabilities and that I would not change for the world.
Last night I was reading a book called The Spark by Kristine Barnett. It is a true story about a woman who explains her sons story through her eyes. Her son has Autism and the story is absolutely beautiful. Reading last night motivated me to write about my story. After all every one has a story and everyone enjoys and lives through their own beautiful, sometimes crazy and unexpected, but nonetheless beautiful ride.
As I approach the ending, as well as the beginning, of a new chapter in my life I feel as though I can finally look back at my Epilepsy and really capture it and call it my own. After all it is my story. It's very much a part of me. The relationships I have made and deepened, the passions I have found, the experiences and journeys that I endured, all stemmed from my own path, a path that was unwillingly changed, I don't want to say for the better, but certainly for a thrilling ride that I love to call my own ride. I am now graduating with a duel certification in Early Childhood Elementary Education and Special Education, both of which allow me to go after my deep passion of working with children with disabilities and that I would not change for the world.
Last night I was reading a book called The Spark by Kristine Barnett. It is a true story about a woman who explains her sons story through her eyes. Her son has Autism and the story is absolutely beautiful. Reading last night motivated me to write about my story. After all every one has a story and everyone enjoys and lives through their own beautiful, sometimes crazy and unexpected, but nonetheless beautiful ride.
Sunday, December 29, 2013
In Need of Public Opinion
As the national youth council meeting approaches, I find myself thinking about restructuring/reprioritizing YC projects based on goals. Re-evaluating our mission to have the greatest national (and international) impact is essential in the upcoming year. A communication network between youth councils seems key. I also want to make sure money being spent is being put to its best use. Once again public opinion is considered in depth! So for those of you reading this post, I want to hear your thoughts and ideas! Please comment if anything comes to mind… such as a fundraising idea you’ve toyed with or lack of youth support in your community.
On a festive note, there is nothing quite like the excitement of heading home for the holidays. Struggling through finals week, as horrible as it seemed, reminds me of those youth that never really got the chance to excel academically due to their epilepsy. Of course the number of people in this group is small compared to all people that have epilepsy. Nonetheless, it made me realize that Youth Council is about more than just socially supporting youth with epilepsy… it is about defeating the condition as a whole. And we won’t stop fighting until there is a solution for every issue caused by epilepsy.
On a festive note, there is nothing quite like the excitement of heading home for the holidays. Struggling through finals week, as horrible as it seemed, reminds me of those youth that never really got the chance to excel academically due to their epilepsy. Of course the number of people in this group is small compared to all people that have epilepsy. Nonetheless, it made me realize that Youth Council is about more than just socially supporting youth with epilepsy… it is about defeating the condition as a whole. And we won’t stop fighting until there is a solution for every issue caused by epilepsy.
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