National Center for ProjectAccess.org News Stories

New Epilepsy & My Child newsletter

A new issue of the Epilepsy & My Child newsletter for Spring 2013 is now available!! Epilepsy & My Child is a quarterly newsletter produced through the collaborative efforts of Epilepsy Foundation staff, National Center for Project Access (NCPA) staff, Advisory Committee members, parents and youth. To subscribe to the newsletter and learn more about how you can contribute, contact the Project Access Team at projectaccess@efa.org.

The National Center for Project Access (NCPA) was busy in the months of October and November! Mimi E. Browne, M.P.H., presented at the American Public Health Association (APHA) national convention in San Francisco and members of the NCPA Team attended that conference, as well as the annual meeting of the Society of Public Health Education (SOPHE) which was also held in San Francisco. We held the first successful Care Coordination Training of the year, in New Orleans, Louisiana on October 7, 2012. Members of NCPA attended the Health Disparities Conference, sponsored by Adventist Health Systems. Gloria Uchegbu, M.P.H. attended an epilepsy symposium on traumatic brain injury, sponsored by Epilepsy Foundation Chesapeake Region, as well as a grant writing workshop. We also completed updates for public awareness and promotional materials, including bookmarks, post cards, babysitter/caregiver note boards, and rulers.

Coming up… we are preparing for the next Care Coordination Training, which will be held in Atlanta, Georgia. The new Project Access newsletter will be published in December. We are also in the process of creating a Spanish language version of the Epilepsy & My Child Toolkit and producing updated NCPA Fact Sheets and Brochures.

Summary of Activities (by November 2012) for Community Forums for Parent/Family Networks

Community Forum for Parent and Family Networks

Affiliate: Epilepsy Foundation  North Central Illinois, Nebraska & Iowa

On August 25, 2012, the Epilepsy Foundation North Central Illinois, Iowa & Nebraska, hosted the Annual Iowa Epilepsy Conference. Individuals and caregivers affected by epilepsy were invited to participate in a day filled with opportunities for engaging in discussions on a variety of topics which impact them and their families.
 
Roxanne Cogil, the Iowa Service Coordinator for the Epilepsy Foundation of North/Central Illinois, Iowa & Nebraska, provided a brief overview of the supportive services available at the Iowa office of the affiliate, as well as a brief presentation on appropriate Seizure First Aid. Roxanne's introduction was followed by a presentation on advocacy, from staff representing Senator Tom Harkin and a local executive working in the field also addressed the audience. The Keynote speaker, Dr. A LeBron Paige, Epileptologist for the University of Iowa Hospitals and Clinics, Department of Neurology, enlightened the group with a lecture on "New Research and Treatment Options for Epilepsy".
 
In the afternoon, participants were invited to attend various sessions on topics which included "Women & Epilepsy", "Seizure 101 for Caregivers", "IEP & Health Care Plans in School", "Employment Discrimination & Epilepsy" and "Social Challenges with Teens & Epilepsy".
 
During the day, as a way to educate the children and youth and prevent them from becoming bored, Roxanne explained, "We held a Kids Camp in conjunction with the Epilepsy Conference, so parents could learn valuable information from speakers, without interference from their kids. Instead of having a daycare, like we have done in the past, we decided to hold a Kids Camp for the children with epilepsy and their siblings". Through her efforts, Roxanne was able to secure donations of food and entertainment, and the children were treated to an interactive performance of the Wizard of Oz, from a local Playhouse, in addition to arts and crafts activities, playing games and engaging in epilepsy focused learning. After only being on staff for three months, three cheers to Roxanne Cogil, and to the many volunteers and Council Members who collaborated to host this successful conference!!! Way to go!

Affiliate: Epilepsy Foundation Colorado

Also on August 25th, the Epilepsy Foundation Colorado affiliate hosted a forum entitled "Beyond Medication". Dr. Brian Grabert, a local Epileptologist spoke at the event held in Colorado Springs. Dr. Grabert spoke about new medications, surgery, VNS, the ketogenic diet, genetic testing, and took time for Q&A from the participants. Additionally, a representative from the Rocky Mountain ADA (American's with Disabilities Act) Center spoke about how the ADA can protect adults, children and families living with epilepsy. There was discussion about how to talk to schools, day care providers, employers, and loved ones about managing living with epilepsy. Jennifer Houston from the Epilepsy Foundation spoke on epilepsy resources in the state of Colorado, including how to access state Medicaid/SSI/SSDI resources. During the Forum, participants were provided with a variety of resources including a very comprehensive 'Quick Reference Guide' which provided contact numbers and websites ranging from community support groups, information on driving, employment, education, veterans benefits, legal advocacy, mental health and other services specific to people living with of caring for those with epilepsy.
Affiliate: Epilepsy Foundation Greater Cincinnati
On August 7, 2012 in Sutton, West Virginia, through collaborative efforts the Epilepsy Foundation of Greater Cincinnati participated in an event primarily for school staff and school-based health center staff. The event was organized by Dr. Richard Crespo, Director of the West Virginia School Health Technical Assistance Center and sponsored by the West Virginia School Nurse Association.

The event provided information on aspects of epilepsy and its' impact on school aged children. The audience included school nurses and other allied health professionals who were mostly unaware of the Foundation's existence. Through this gathering and information exchanges, each school-based health clinic left with brochures and other materials for their school-based health clinics.
 
Patty Trotta, Director of Counseling and Education, at the Greater Cincinnati affiliate office explained, "The focus was to educate the school nurses/allied health professionals about our existence; provide information about seizures and recognition thereof and to make them aware that the Epilepsy Foundation is not only a valuable resource for them but that we can also be very helpful to those family members who are dealing with epilepsy be it brothers, sisters or parents. This event was important because there is very little epilepsy assistance in W.V. If we can educate the school staff and school-based health clinic doctors and staff on epilepsy right in the school, we would then be reaching a lot of families of those touched by epilepsy".
 
Another event organized with Cincinnati Children's Hospital took place on Saturday, September 15, 2012. Through a partnership with the Cincinnati Children's Hospital Neurology Department, the staff hosted a forum geared towards families whose child has either had brain surgery for their seizures and/or received the VNS implant. Twenty five families attended the event with a total of approximately 80 adults and children. The event was held at Camp Kern, the location where all camp activities are offered for children. The morning kicked off with some fun entertainment by a local performance group, MoJo Circus. Following the performance, the day was organized with separate sessions for children and adults. The children engaged in games, crafts and musical activities lead by EF staff, as well as hospital staff and volunteers. Meanwhile, the parents took part in sessions that included information on school resources, supportive services, medical advice and resources, recreational activities available in the community and opportunities for networking with others. In the afternoon families reconvened for outdoor recreational fun which included: canoeing, archery, a zip line and more. The theme for the day was HOPE and this message was woven throughout the talks, games and activities. All participants seemed to enjoy the day, found the resources helpful and expressed appreciation for the opportunity to meet other families going through similar challenges.
 
(Note: Not a Forum activity) The last event hosted by the Cincinnati affiliate during that month was The Autism Expo, held on September 26, 2012 at the Live Oaks Campus in Milford, Ohio. The Expo had over 68 child health care agencies represented and approximately 2,500 participants in attendance.  Patty reported that "approximately 250 people stopped by the booth to take brochures, and sometimes engaged in lengthy conversation about how epilepsy has touched their lives. Through collaborating on activities with the Autism Society thousands of people have been connected to providers, therapists, doctors and organizations that offer services for autism and related issues like epilepsy". Patty expressed her strong conviction in this partnership and has "witnessed the benefits of collaborating through sharing resources to strengthen networks across the community all in efforts to improve access to care for children, youth and adults living with epilepsy".

Grantee Meeting in March 2012

Our annual meeting of Project Access Grantees was held on March 1 and 2, 2012, in Arlington, VA. It was a successful conference, which allowed for the exchange of many ideas and experiences, as well as the exploration of ideas related to the implementation and expansion of Project Access.

Grantee Newsletters from New Hampshire and Nebraska

Two grantees presented newsletters giving insight into what they're doing in the on-going effort to ensure that children and youth with epilepsy have the access to the services they need. Nebraska wrote about Project Access' utilizing the telehealth network in their state. The New Hampshire grantee presented a newsletter outlining the FACETS of Epilepsy Care, which serves New Hampshire in areas of primary pediatric care, educational forums, and youth engagement.

New National Center for Project Access Team!

It is our pleasure to present the new NCPA Team for Project Access. The new team lineup includes Mimi E. Browne (Director of HRSA Programs), Phyllis George (Program Manager), Gloria Uchegbu (Program Manager), Franny Lerner (Program Manager), and Elizabeth Musick (Administrative Coordinator). Phyllis and Gloria both joined the Team in March, with Franny rounding out the Team in June. All three have a substantial mixture of talent and experience and bring to the Team a fresh outlook into accomplishing the goals of the National Center for Project Access. Phyllis is responsible for managing the Demonstration Grant program, where we are building a learning collaborative network. Gloria is heading up our promotional materials and publications, including newsletters (Epilepsy & My Child and Project Access), giving them a new look and incorporating more input from our extended family! Franny is overseeing the development of our parent and family networks, to connect families of children and youth with epilepsy with each other and health care officials which will contribute to a greater quality of life for those with epilepsy. Mimi Browne and Elizabeth Musick continue in their roles as Director and Administrative Coordinator, respectively. We look forward to a wealth of plentiful contribution and dynamic progress with our new team!

New Epilepsy & My Child newsletter

A new issue of the Epilepsy & My Child newsletter* was released on Thursday, June 14, 2012!! Epilepsy & My Child is a quarterly newsletter produced through the collaborative efforts of Epilepsy Foundation staff, National Center for Project Access (NCPA) staff, Advisory Committee members, parents and youth.  NCPA's most recent publication of the newsletter was shared electronically with more than 64,000 recipients; nearly 8,000 recipients forwarded a copy of the newsletter to at least one additional individual.  The widespread distribution resulted in more than 100 emails from recipients interested in receiving future editions of the newsletter, contributing to future newsletters, and individuals who want to assist other ways, such as sharing the newsletters at local, regional, and national events.  Hard copies of the newsletter are also available upon request.  To subscribe to the newsletter and learn more about how you can contribute, contact the Project Access Team at projectaccess@efa.org. 

Newly Redesigned Toolkits Available Upon Request

Since its release in 2010, the Newly Diagnosed Parent Toolkit has been a stunning success. We've delivered close to 2000 toolkits, and counting! The Epilepsy & My Child Toolkit: A Resource for Parents with a Newly Diagnosed Child provides parents with a general introduction to epilepsy and addresses the most common concerns a parent has when their child is newly diagnosed with epilepsy. This toolkit was developed by the National Center for Project Access (NCPA) at the Epilepsy Foundation to help parents better understand epilepsy, answer questions, and direct them to other resources for additional support. The toolkit has undergone two separate revisions and the newly redesigned toolkits are available now, upon request. They are one of our most valuable assets in the on-going effort to enrich the lives of children living with epilepsy.

New CEO at Epilepsy Foundation

This July, we welcomed a new CEO for the Epilepsy Foundation National Office. Philip M. Gattone, M.Ed., was selected by the Board of Directors to lead the Foundation as its President and CEO. He previously served as the President and CEO of the Epilepsy Foundation of Greater Chicago, before coming to the Foundation's home office.

For over 20 years, Phil has been involved in the campaign to educate people about living with and caring for those with epilepsy, as well as the fight to develop a cure for the enigmatic disease. He has also been instrumental in raising the standards of affiliates and solidifying the relationship between the Home Office and the Affiliates. We look forward to Phil's continued success and the direct benefits that means for the Foundation as a whole.

For more information regarding our new CEO, click here.

Community Forums for Parent/Family Networks for Children and Youth Living with Epilepsy

On June 22^nd, the National Center for Project Access (NCPA) made an announcement through eFlash offering incentive awards to fund up to eight affiliates a total of $10,000 for one year (August 1, 2012 – July 31, 2013) to organize and host at least four Community Forums for Parents and Families of Children and Youth Living with Epilepsy. The purpose of these forums is to foster conversation between parents and professionals and service providers in order to increase awareness of epilepsy and access to care and reduce barriers within underserved communities. A total of 12 applications were submitted on July 15, 2012. The proposals were reviewed by staff at the Epilepsy Foundation Home Office, members of the Advisory Committee, and external reviewers who participate in other aspects of the Foundation on a voluntary basis. The 8 awardees were contacted on July 25, 2012. We are very pleased to present the awardees for the Community Forums for Parent/Family Networks of Children and Youth Living with Epilepsy:

§  Epilepsy Foundation of Kentuckiana

§ Epilepsy Foundation of Massachusetts, Rhode Island, New Hampshire and Maine

§ Epilepsy Foundation of Colorado

§ Epilepsy Foundation Chesapeake Region

§ Epilepsy Foundation of Greater Cincinnati

§ Epilepsy Foundation of Greater Los Angeles

§ Epilepsy Foundation of North Central Illinois, Nebraska, Iowa

§ Epilepsy Foundation of Western Wisconsin