Project Seizure Free


By Jody Eaton Iorns, CEO

April 23th, 2018

 

The Vision

Recently, at one of our conferences, a young girl was asked, “what do you want to be when you grow up?”  Her answer stunned us, yet made perfect, clarifying sense.  She said, “I want to be seizure free.”

Having been on board with the Foundation now for about 2 ½ years, I and the team have been working to develop a long-range vision/plan for the Foundation.  Where are we going?  Where do we want to be?  How are we going to get there?  What are our obstacles?  What are our strengths?  And once identified – can we make this work?

Yes, we can and I am pleased to share with you, in honor of that young lady who made that statement along with everyone else living with epilepsy, the inspirational and motivational result of these conversations, planning and vision:  Project Seizure Free.

Project Seizure Free is a five+ year vision that is intended to be both solid and fluid concurrently.  First, we identified our major obstacles:  geography and resources (both fiscal and human).  Next, we determined which of the many needs/programs we want to perfect:  the High Five (description to follow.)  And, finally, we assessed our strengths and opportunities for growth:  our human and fiscal capital.

 

Regionalization

In terms of geography and resources, we serve an extremely large territory:  44 counties with over 15.6 million people to support.  While 180,000 of those live actively with epilepsy, anyone with a brain can develop epilepsy and, therefore, it falls on us to recognize that each one of the 15.6 million is someone we need to touch.  This cannot be done by 4.25 FTE (equivalent of full-time staff) even when supported by an amazing cadre of volunteers!  Our solution is to Regionalize.  We have split up our territory into 5 regions and are embarking on an effort to develop Regional Advisory Boards in each area.

We have already put this into motion with the North Coast Cascades Region led by Julee & Curtis Gould.  You can check out their Facebook page here.  We have no set timeline for the implementation of the other regions as we want to be responsive yet responsible in our ability to support and sustain each area.

High Five Programs

We recognize the many ways in which our community needs our support:  education, information, support groups, transportation, financial assistance, medical referrals, IEP, and so on.  With input from our community, we identified the five(plus) programs that we would like to focus on during this regionalization:

  • Support Groups
  • Peer2Peer
  • Living with Epilepsy Conferences
  • Seizure First Aid/Youth Board
  • Case Management

The concept is that by focusing this attention in these five areas, we can assure that the support we are providing is of the highest quality and can be replicated easily by each Region.

A constant program that will continue to build and expand is, of course, our camp program:  Camp Coelho and Camp Christopher!

Strength and Opportunities

Through all of our research, conversations, considerations, and assessments, one thing resonated loudly – that we are incredibly blessed and strengthened by our community and volunteers.  Without the many folks who serve on our Board, PAB, local committees, Seizure First Aid Trainers, Youth Board, and so many more, we would not be able to provide the critical programs and support that we do.  This is what we call our Human Capital:  priceless and essential to our success.

In addition, throughout my 30+ years of non-profit experience, I have never been involved with as strong and passionate a community as that which is the epilepsy community.  On average, not a day goes by where we do not get a call offering to help or a financial donation in the mail or online.  This, of course, is the Fiscal Capital: equally essential in this 21st century as we aim to operate with integrity and transparency as Stewards of the Donor Dollar.  And while the revenue is generous and consistent, we still do not generate enough to provide the important direct services throughout our region that are essential to every person with epilepsy’s quality of life.

As such, we believe that through this effort to regionalize and expand our direct services, we will be able to connect more, support more, and generate more in both fiscal and human capital.

Please Join Us!

I hope you can tell how excited and motivated we here at the Foundation are about this Project.  As stated earlier, we need your help and engagement to realize it in totality.  We are looking for folks to work with us as we build out each region; to host fundraising/awareness events; to point us to the right resources in their areas; to make connections to people of significant means who might be interested in investing in this vision; and to broaden our volunteer base of speakers, Peer2Peer Mentors, Trainers and so on.  If you are interested, have thoughts on this vision, or any other inquiry, please feel free to send an email to my attention (Jody Iorns, CEO) at: efnca@epilepsynorcal.org.  I look forward to hearing from and working with all of you!

 

Project Seizure Free

by Jody Eaton Iorns, CEO