Spotlight on Expanding Access to Rural Communities in West Virginia

EFWV presents at Children's Health Fair

From left to right: Executive Director of the Epilepsy Foundation West Virginia Chris Mullett and advisory board members Barbara Hannig and Dr. John Magruder discussed the brain and seizures at a children's health fair.

Epilepsy News From:

Tuesday, June 25, 2019

Epilepsy Foundation West Virginia

This month, we shine a spotlight on the Epilepsy Foundation West Virginia (EFWV). This new local Foundation with a staff of one works around the clock to reach out to rural and underserved communities in the state to build awareness and support. Expanding access and services to underserved communities is a key part of our cooperative agreement with the Centers for Disease Control and Prevention.

Raising Epilepsy Awareness in the Mountain State

As West Virginia prepares to acknowledge its 156th birthday as a state, EFWV is also celebrating the six-month anniversary of its formation as a chapter. As with any new organization, they have primarily focused on establishing relationships with those affected by epilepsy, their family members, and providers.

As the executive director and only staff member, I have traveled around much of the state to interview families and determine what is needed from our organization – EFWV executive director Chris Mullett

"With over 24,000 square miles to cover, this experience has allowed me to meet some wonderful families, medical professionals, and support networks who are very excited to learn that the Epilepsy Foundation is now in the Mountain State," Chris continued.

This first six months has been all about awareness. Chris has presented to area civic organizations, participated in health fairs, created brochures for local school nurses to distribute, and established support groups. The whirlwind of training has inspired EFWV to create fundraisers and develop a network of professionals whose values align with the Epilepsy Foundation.

Team ICE Out Epilepsy at Walk to End Epilepsy D.C.
Team #ICEOutEpilepsy at the Walk to END EPILEPSY® in Washington, D.C.

Teens Speak Up! and Walk to END EPILEPSY – D.C.

One of the highlights for EFWV so far was attending the Walk to END EPILEPSY and Teens Speak Up!/Public Policy Institute in Washington, D.C., with their EFWV teen representative, Carlie Ice.

“Carlie has not only become an effective advocate, but has given a face to our chapter,” said Chris. “She, along with others who suffer from epilepsy, have given me insight into the disease’s effect on mental as well as physical health.”

EFWV meets with Senator Shelly Moore
Nancy Ice, Dana Richter from Senator Shelly Moore's staff, Carlie Ice, and Executive Director of EFWV Chris Mullett

Building Relationships to Expand Access

The EFWV advisory board has been instrumental in helping to establish objectives and timelines for upcoming projects. They continue to offer support and suggestions on raising awareness throughout the state.

Chris has met with pharmaceutical representatives and doctors to ensure EFWV resources and information are up to date and relevant.

Establishing relationships with those who serve people with epilepsy has been vital in helping me to develop a vision for our chapter that will meet the needs of West Virginians – Chris

“I presented at the state school nurses conference in June to raise awareness of our Foundation and the resources we offer,” Chris continued.

“As volunteers get established, I am planning additional support groups in underserved areas throughout the state,” said Chris. “Because our state has many rural areas, I plan to also create awareness of resources and events via social media. I will continue to work with school systems to provide training and plan to begin training law enforcement and emergency personnel as well.”

EFWV Support Group
Epilepsy Foundation West Virginia Support Group

Engaging the Local Community

Recently, EFWV partnered with a high school program to fundraise for Lemonade for Livy and plans to continue selling frozen lemonade at various events. They also began planning for the first EFWV Walk to END EPILEPSY®, which will be on October 6, 2019, in Morgantown, WV.

To encourage broad participation, EFWV is working on a virtual gala and silent auction so that people from all over the state can take part. They are also working with a local nail salon to do manicures and pedicures with purple nail polish, with proceeds benefiting EFWV.

Thank you to the Epilepsy Foundation West Virginia for expanding access and services to people living with epilepsy in the Mountain State!

Related Links

Authored by: Chris Mullett on 6/2019
Reviewed by: Liz Dueweke MPH on 6/2019

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
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