Message from the Editor
As spring forges along, I am excited as we launch a new issue of the Epilepsy & My Child newsletter. There has been somewhat of a hiatus in the publication of the newsletter for good reason. We took some time to reorganize, regroup and tweaked certain aspects of the newsletter. As a new Program Manager for the National Center for Project Access, I have taken on the responsibility as editor of Epilepsy & My Child.
Epilepsy & My Child is a quarterly newsletter produced through the collaborative effort of Epilepsy Foundation staff, National Center for Project Access (NCPA) Advisory Committee members, parents and youth. This publication is one of the primary communication channels for children, youth and parents of those living with epilepsy. It highlights opportunities, activities, events and cutting-edge information as it relates to epilepsy. The newsletter is also useful to anyone interested in increasing awareness and improving access to care for children and youth with epilepsy. In an effort to offer our readers a wealth of engaging and inspirational articles from across the nation, we are in the midst of identifying volunteer contributors and writers. As part of this inclusive approach, we welcome your input into the content of this quarterly newsletter (see announcement in News, Events…) as we strive to promote public education and understanding about epilepsy and its impact on people’s lives. The newsletter is for and about you. I will just be the conduit for getting the information out to the public.
In this issue, we are highlighting youth and events that are helping to bring epilepsy to the forefront. We ask that you keep in mind this definition of “Youth Guided” developed by Youth M.O.V.E National. Youth Guided means that young people have the right to be empowered, educated, and given a decision making role in the care of their own lives, as well as the policies and procedures governing care for all youth in the community, state and nation. This includes giving young people a sustainable voice and then listening to that voice. Youth Guided organizations create safe environments that enable young people to gain self sustainability in accordance with the cultures and beliefs with which they identify. Further, a Youth Guided approach recognizes that there is a continuum of power that should be shared with young people based on their understanding and maturity in a strength based change process. Youth Guided organizations recognize that this process should be fun and worthwhile.
In closing, I wish you a very enjoyable and safe summer. Do take advantage of opportunities to get involved and spread awareness and education about epilepsy and share your stories and photos in the next issue.
Gloria Uchegbu, MA, MPH
In This Issue
- News, Events & Views For You to Peruse
- 6th Annual National Walk for Epilepsy
- Summer Plans? Summer Camps and Summer Vacation
- Wanted: Newsletter Contributors
- Resources and Events
- Feature: In the Spotlight—Youth Reaching Great Heights
- Introducing the Triple C-Cross Cultural Corner
- Inspiring Words
News, Events & Views for You to Peruse
The Sixth Annual National Walk for Epilepsy was held on Saturday, March 31, 2012 at the National Mall in Washington, DC with an estimated 5,000 people in attendance. The National Walk for Epilepsy is a family oriented, non competitive walk event. The Walk raises awareness and funds for research, education, advocacy and services for people with epilepsy and their caregivers It is an opportunity for individuals with epilepsy, their families, friends and organizations to make a difference and support the Epilepsy Foundation. Approximately 40% of participants register from areas outside the Washington, DC metro area. Many participants register as virtual walkers and conduct walks in their local area. On Walk Day 2012, there were many family-friendly activities for those who attended the Walk. There were face painters, local mascots like the Orioles Bird and the Washington GreenHawks “Dunkin”, as well as, the Chick-fil-A Cow. In addition to all of the fun activities, the event provided on-site resource opportunities like the “Ask the Experts” session, a Q&A session with top neurologists fielding questions from Walk participants. The 2012 session featured members of the Institute of Medicine (IOM) committee of the recently released, Public Health Dimensions of the Epilepsies, who provided an overview of the IOM study results. Over the past 5 years, the Walk has engaged more than 30,000 people and raised over $5 million. More information about the Walk and how you can get involved in next year’s Walk event can be found at www.walkforepilepsy.org.
Summer Camps and Summer Vacation
Summer is around the corner! In fact, the first day of summer is June 20th and planning for summer activities has already begun. Spaces in summer camps fill up quickly as space is very limited. The Epilepsy Foundation houses summer camps each year that are sponsored by the Foundation’s Affiliates located throughout the United States and Puerto Rico. Epilepsy Foundation overnight camps are special places where children with epilepsy can play, explore and learn together. With trained counselors and medical professionals on staff, children can swim, climb and do activities that might otherwise be dangerous in other camps.
This is what one mother interviewed for an article in EpilepsyUSA had to say about its impact on her daughter: “… she would never be able to go to a normal camp because no camp takes on that liability. Here they go on boats and swimming. It is all supervised to make it a safe environment. They climb a big wall; she would never have that experience. They have top doctors, top nurses, all who volunteer their time. It is an absolutely incredible situation.”
For many, what’s even more important than the activities is the chance to make friends with others for whom seizures, medicine and frequent doctor visits are part of everyday life. Most programs are one week and offer scholarships based on financial need. Contact your local Epilepsy Foundation affiliate to find out more information about camps in your area. Visit here to locate your affiliate using your zip code and state. More information on camps can also be found by clicking here:
Wanted: Newsletter Contributors
Can you write about current trends, activities, programs and research news? Or perhaps you are aware of newsworthy awards and achievements or you just wish to share ideas for articles and themes for the publication. Here is your opportunity to get involved, tell us what’s happening in your community and help shape the direction of the Epilepsy & My Child newsletter! We are currently seeking children and youth living with epilepsy, as well as, their parents and families to write, review and edit article submissions. There are several ways that you can contribute to the newsletter content. Please write me at firstname.lastname@example.org for further information. Thank you.
Resources and Events
Teens and young adults with epilepsy face more challenges than many of their peers. The Epilepsy Foundation website has a wealth of information to help address fears and concerns. From resources on epilepsy to teen and youth support groups and forums, the website helps you stay connected with other teens and youth through Facebook and other social media channels. These forums can also serve as a place to find answers to challenging questions about driving, dating, school, alcohol and other important issues. For more information, visit epilepsyfoundation.org/livingwithepilepsy/youth.
FEATURE: In the Spotlight—Youth Reaching Great Heights
Article submitted by Christina Westra, National Youth Council Chair
In my senior year of high school in a composition class, we were asked to write a final paper on a topic that impacted our lives. I decided to write my paper on epilepsy because four years prior I had been diagnosed with it. I spent the complete second half of my semester delving into what epilepsy was and the intricacies of what was occurring within my brain. That research paper sparked something inside me as I realized the number of other people living with this disorder. It also sparked a realization that standing by passively was not doing myself or anyone else any benefit, and there was something I could and should be doing. My involvement began through Camp Discovery and now I have the honor and privilege of being the chair of the Epilepsy Foundation National Youth Council.
The Youth Council has gone through many changes, but its foundation has always remained the same. The Youth Council has been a positive guide and model for youth with epilepsy, as well as, a leader in promoting education and awareness. As 2012 gets underway, the Youth Council has added five new fantastic members and continues to work diligently on projects such as its Facebook group, Youth in Epilepsy, creating a college education program, helping local youth councils develop, and encouraging stronger online communities. Several past and present Youth Council members voluntarily contributed their time to attend and assist with the Kids Speak Up event.
Each member of our Youth Council has epilepsy or has some connection to epilepsy and all are truly passionate about the cause. We are of diverse geographical and educational backgrounds and have varying life experiences with epilepsy. But when we come together, we serve a common purpose and together, we are committed to making a difference.
How Epilepsy Has Taught Me to Live
Article submitted by Danny Rosenfeld, NCPA Advisory Committee Member
As someone who has lived with epilepsy for almost 17 years, my life has been filled with experiences that no one should have to endure. Epilepsy, however, has also brought out the best in me as a mentor and a teacher.
American psychologist and philosopher William James once said that if you believe that life is worth living then your belief will help create the fact. I believe that everyone who lives with epilepsy deserves the chance to live life to the fullest. As a Helping Other People with Epilepsy (H.O.P.E.) Mentor, I have the opportunity to share my hope with others so that they can do more than just survive with epilepsy, but truly live.
H.O.P.E. Mentors are individuals who are living with epilepsy or family members who have made a commitment to share their personal experiences with epilepsy through this program. Each mentor must successfully complete a training program to become a certified H.O.P.E. Mentor. Through this training, mentors are taught the program curriculum developed by leaders in the field of epilepsy. The program curriculum is designed to have mentors share their personal experiences and stories about living with epilepsy.As a H.O.P.E. Mentor, I’ve had experiences I will treasure forever. One such experience is Camp Boggy Creek. During the summer of 2011, I served as a Volunteer Camp Counselor at this camp designed especially for kids suffering from various disorders, including epilepsy. Also in 2011, I worked with Susan Eddins of the Epilepsy Foundation of Florida to provide Collier County School Nurses with the knowledge they need to observe and treat children in the school system who suffer from epilepsy. I’ve since done the same thing with the staff of the Golisano Children’s Museum of Naples. My hope is to continue reaching out to other groups in the community so everyone understands epilepsy and how they can help those living with the disease. These experiences are opportunities that epilepsy has given me to bring out the best in me as a mentor and teacher while giving others hope. Read more.
Introducing the Triple C-Cross Cultural Corner
The diversity and cross cultural awareness corner promotes inclusion so that all people with epilepsy can live, learn, work, play, thrive and participate fully. It provides a forum to raise awareness about how epilepsy is experienced in diverse communities across the nation, to increase knowledge, reduce stigma and improve lives. Information shared through the diversity and cross cultural awareness corner helps promote effective collaborations and partnerships between culturally diverse individuals and families impacted by epilepsy, service providers, community advocates and policy makers to ensure access to culturally and linguistically appropriate services and opportunities that support living well with epilepsy. The diversity and cross cultural awareness corner is brought to you through a partnership with a CDC cooperative implemented at the Epilepsy Foundation. Stay tuned for culturally diverse and eclectic information in upcoming issues.
“Work for a cause, not for applause. Live life to express, not to impress, don’t strive to make your presence noticed, just make your absence felt.”
This newsletter is brought to you by the National Center for Project Access. Project Access is a national effort designed to improve access to comprehensive, coordinated health care and related services for children and youth with epilepsy.