Epilepsy Foundation of Middle and West Tennessee

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1 Epilepsy Foundation of Middle and West Tennessee General Information Contact Information Nonprofit Epilepsy Foundation of Middle and West Tennessee Address 95 White Bridge Road Suite 215 Nashville, TN Phone (615) Fax Web Site Web Site Facebook Facebook At A Glance Year of Incorporation 1979 Former Names Epilepsy Foundation Middle and West Tennessee 1

2 Mission & Impact Statements Mission The Epilepsy Foundation of Middle and West Tennessee is dedicated to ending epilepsy and its consequences and to helping persons with epilepsy and their families overcome the problems associated with the disorder. Background The Epilepsy Foundation of Middle and West Tennessee (EFMWT) was chartered as a 501(c)(3) not-for-profit organization in It is dedicated to the prevention and control of epilepsy and its consequences and to helping persons with epilepsy and traumatic brain injury, their families, and other concerned individuals overcome the problems associated with the disorder. An independently incorporated affiliate of the Epilepsy Foundation of America, EFMWT serves the sixty-one counties of middle and west Tennessee and provides an array of free programs and services to persons with epilepsy, traumatic brain injury and/or other disabilities, including free information and referral, individual and group counseling, a parent support network, advocacy, summer camp, therapeutic recreation and service coordination for individuals with traumatic brain injury. Since chartered, the EFMWT has experienced solid growth and has demonstrated fiscal responsibility by skillfully managing programs, grants and contracts. During its first year, the Foundation contracted with the Department of Health to provide community education about epilepsy, referral and information and support groups. The contract has been renewed on a yearly basis for the past 29 years. In 1991 the Foundation received a threeyear grant from the Developmental Disabilities Council to offer a Parent Support Network to parents of a child with any disability. Even though funding from DDC ended in 1994, the Foundation has continued to provide this much-needed service. In 1998 the Foundation received a grant from the Tennessee Department of Health Brain Injury Program to provide Service Coordination for brain injury survivors and their families in four counties of the South Central Development District. In 2001 the service area was expanded to include eight additional counties in the SCDD. In the 2002 the Service Coordination contract was amended to include the Upper-Cumberland and Mid-Cumberland Development Districts for a total of forty counties. In 2004 the service area for the Foundation was expanded to include the twenty-one counties of west Tennessee. Impact More than 3.4 million people in the U.S. have epilepsy. Because of the likelihood that you will know someone who has epilepsy or see someone having a seizure, the Epilepsy Foundation is committed to educating children and adults about seizure recognition and first aid, and how to best assist a person having a seizure. We believe that by raising the level of awareness and teaching the general public about epilepsy, we can help reduce the fear and stigma associated with the disorder. It is our hope that people with seizures will be able to participate in all life experiences without fear of having a seizure in public and how others will react to them. We make great efforts to ensure that people have information about laws and about legislation that affects them. One of our most significant goals for 2008 is passage of the Diastat Bill (HB3268/SB2798), which states that there will be two trained volunteer lay people who are willing to administer this life-saving drug to a child having a seizure lasting more than five minutes without fear of liability or harm to the child. If a school nurse is not available when a child has a prolonged seizure that can cause brain damage and event death, this will allow non-medical school personnel to administer the Diastat. One of our most significant accomplishments of 2007 was the passage of the Patient Protection Act. Tennessee is the only state in the U.S. that passed this bill. The Patient Protection Act states that a pharmacist must notify the prescribing physician when a different brand or generic anti-epileptic drug is filled than originally prescribed. Passage of this bill was vital to protect those living with epilepsy to ensure they would not have breakthrough seizures when they are switched from one version of a medication to another. 2

3 Needs Our 2 state grant contracts support epilepsy awareness education and service coordination for traumatic brain injury. The state does not fund programs that directly address our communities' unique needs and we must fill this void. Many in our community lack health insurance and cannot afford expensive anti-seizure medication. Many cannot drive and miss medical appointments. To counter sudden unexplained death due to epilepsy, we launched our seizure watch program which makes seizure watches and service plans available to adults living alone, with or without children. We want to expand the program to provide seizure watches and service plans to everyone who can benefit. We are also building a medication and transportation program. Veterans with Epilepsy and traumatic brain injuries are very underserved. We have partnered with Fort Campbell to offer workshops for veterans and for those on active duty and their families. We need additional funding to expand our workshops to other military bases in Tennessee. Other ways to donate, support, or volunteer epilepsyfoundationmwtn Service Categories Primary Organization Category Diseases Disorders & Medical Disciplines / Epilepsy Secondary Organization Category Diseases Disorders & Medical Disciplines / Epilepsy Tertiary Organization Category Education / Areas of Service Areas Served TN - Bedford TN - Cannon TN - Cheatham TN - Clay TN - Coffee TN - Cumberland TN - Davidson TN - Dekalb TN - Dickson TN - Fentress TN - Franklin TN - Giles TN - Hickman TN - Houston TN - Humphreys TN - Jackson TN - Lawrence TN - Lewis TN - Lincoln TN - Macon 3

4 TN - Marshall TN - Maury TN - Montgomery TN - Moore TN - Overton TN - Perry TN - Pickett TN - Putnam TN - Robertson TN - Rutherford TN - Smith TN - Stewart TN - Sumner TN - Trousdale TN - Van Buren TN - Warren TN - Wayne TN - White TN - Williamson TN - Wilson We offer services and programs to rural areas which are under served in Tennessee. CEO Statement The Epilepsy Foundation of Middle and West Tennessee is committed to serving individuals with epilepsy, traumatic brain injuries, their family and loved ones. Many in our community cannot afford their anti seizure medications, transportation to jobs, support groups, and doctors are unique to our community who often cannot drive. Respite and support services for families are much needed since the disorder is often life long. Our mission, to improve the lives of those with epilepsy their families and caretakers is our guide. Many of our board members and staff struggle with epilepsy themselves or have a loved one with epilepsy or a traumatic brain injury. 4

5 Programs Programs Community Education Services Description The Epilepsy Foundation reduces fear and stigma about the disorder through education and awareness. By partnering with organizations like the Nashville Sounds and the Titans, we raise epilepsy awareness and also build community. Educating the public is key to dismantling fear about seizures. We provide free seizure workshops at schools, health fairs and at civic organizations. We also educate professionals such as nurses, law enforcement, and first responders. To counter SUDEP, we pay for seizure watches and a 1 year service contract with the FDA approved Embrace seizure watch. We lead 3 support groups in Nashville, one for individuals with epilepsy or a traumatic brain injury a second for parents/caregivers and a third for parents of children with these disorders. Support groups are held in Cookeville, Cordova, and Murfreesboro. Determined to involve our teens, we have a Facebook page, an Instagram account and will take a teen to Washington, DC in April for Teens Speak Up- an advocacy building program. We provide funding for medication and provide free legal guidance on employment discrimination and educational issues. We also conduct a weekly recreation program for adults with traumatic brain injuries in Shelbyville. Group activities include games, crafts, art and physical therapy with an emphasis on fun and friendship We serve 61 counties in middle and west Tennessee. Budget Population Served Short Term Success Examples of Program Success,, Adults We implemented our seizure watch program in October, 2018 and will monitor its success using data analytics from our case management system. Vanderbilt Hospital has advised that several patients have been requesting documentation to submit to the seizure watch program. We will monitor recipients by county using data analytics. Therapeutic Recreation Services Description Our weekly therapeutic recreation program is for adults with a traumatic brain injury. The group meets every Tuesday in Shelbyville for a day of recreation and camaraderie. As of January, 2018 more than 75 clients are participating in our rec program. Budget Category Population Served Long term Success Education, General/Other Extracurricular Activities People/Families with of People with Disabilities, Other Health/Disability, Adults Our recreation program is well attended and feedback from members say the group builds camaraderie and nurtures new friendships. Participants feel welcome and find strength in learning how their peers are dealing with brain injuries. 5

6 Service Corodination for Traumatic Brain Injury Description Approximately 6,000 Tennesseans suffer each year from Traumatic Brain Injury (TBI). After a person is treated and leaves the hospital or rehabilitation facility, they are often left to face the world with impaired cognitive, behavioral and emotional difficulties. The Tennessee Traumatic Brain Injury Program provides eight service coordinators across the state to help TBI survivors and their families. Cookeville and Shelbyville coordination is provided by the Epilepsy Foundation Middle and West Tennessee. Service coordinators help people with various needs such as obtaining free or discounted medicine, applying for Social Security or other benefits, recommending trained counselors or assistance with finding recreational social services. The service coordinator also helps identify survivor goals, develops a comprehensive care plan and monitors the person s progress. From , the Epilepsy Foundation provided service coordination to 50 individuals with TBI. Budget Category Population Served Diseases, Disorders & Medical Disciplines Epilepsy Adults, Children and Youth (infants - 19 years.), Direct Services Description The Epilepsy Foundation of Middle & West Tennessee provides direct services including therapeutic recreation, service coordination for persons with traumatic brain injury, referral and information, liaison services and advocacy. Population Served Adults,, Parent Support Networks Description Category Population Served The Epilepsy Foundation of Middle & West Tennessee provides parent support networks to parents who have a child with any disability or who is at risk. Diseases, Disorders & Medical Disciplines Epilepsy Adults, General Public/Unspecified, 6

7 Governance Board Chair Board Chair Company Affiliation Gwen Hammer Term Jan 2013 to June Director of Education and the Development Coordinator of Civil Rights Compliance for the State Division of Clinical Leadership. Board Members Name Affiliation Status Ms. Ann Koresdoski Ms. Linda Booker Ms Gwen Hamer Ms. Chrissy Hood Mr. Thomas E. Hunter Ms. La'Wanda Jenkins Ms. Katherine Jordan M.D. Assistant Professor Robert Partlow Naftel Ms. Betty White Mr. Ben Worthington D&D Transportation, Inc and Venture Worldwide, Inc. Dept. of Mental Health, State of Tennessee Vanderbilt University Medical Center Dept of Neurological Surgery Vanderbilt Children's Hospital Board Demographics - Ethnicity African American/Black 4 Asian American/Pacific Islander 0 Caucasian 6 Hispanic/Latino 0 Native American/American Indian 0 Other 0 Board Demographics - Gender Male 3 Female 7 Unspecified 0 Governance Board Term Lengths 3 7

8 Board Term Limits 3 Board Meeting Attendance % 80% Written Board Selection Criteria? Written Conflict of Interest Policy? No Yes Percentage Making Monetary Contributions 80% Percentage Making In-Kind Contributions 25% Constituency Includes Client Representation Yes Number of Full Board Meetings Annually 12 Standing Committees Executive Nominating Risk Management Provisions Workers Compensation and Employers' Liability CEO Comments 8

9 Management Executive Director/CEO Executive Director Term Start July Ms. Elisa Hertzan Experience Attorney with over 25 years of experience as litigation counsel for underrepresented groups. Admitted in TN, NY, NJ. Former CEOs Name Term Mrs. Joyce Whitmer Jan Mar 2017 Staff Full Time Staff 3 Part Time Staff 3 Volunteers 8 Contractors 0 Retention Rate 90% Plans & Policies Does the organization have a documented Fundraising Plan? Under Development Does the organization have an approved Strategic Plan? Under Development Number of years Strategic Plan Considers 4 When was Strategic Plan adopted? 2017 In case of a change in leadership, is a Management Succession plan in place? Under Development Does the organization have a Policies and Procedures Plan? Under Development Does the organization have a Nondiscrimination Policy? Yes Does the organization have a Whistle Blower Policy? No Does the organization have a Document Destruction Policy? Yes 9

10 Affiliations Affiliation Affiliate/Chapter of National Organization (i.e. Girl Scouts of the USA, American Red Cross, etc.) - Affiliate/chapter Year 1988 CEO Comments The Foundation works with the Epilepsy Foundations of Knoxville and Chattanooga to bring services to all counties in TN and to advocate for favorable legislation. 10

11 Financials Fiscal Year Fiscal Year Start July Fiscal Year End June Projected Revenue $287, Projected Expenses $281, Endowment Value $0.00 Endowment Spending Policy N/A Endowment Spending Percentage (if selected) 0% Detailed Financials Revenue and Expenses Total Revenue $235,087 $274,065 $211,047 Total Expenses $256,093 $257,039 $244,714 Revenue Sources Foundation and Corporation $0 $0 $0 Contributions Government Contributions $180,322 $246,000 $173,000 Federal $0 $0 $0 State $0 $0 $0 Local $0 $0 $0 Unspecified $180,322 $246,000 $173,000 Individual Contributions $70,766 $27,563 $32,898 Indirect Public Support $0 $0 $0 Earned Revenue $0 $0 $0 Investment Income, Net of Losses $5 $12 $0 Membership Dues $0 $0 $0 Special Events $5,000 $490 $4,350 Revenue In-Kind $0 $0 $0 Other $0 $0 $799 11

12 Expense Allocation Program Expense $2,017,136 $217,631 $219,927 Administration Expense $27,951 $39,408 $24,787 Fundraising Expense $0 $0 $0 Payments to Affiliates Total Revenue/Total Expenses Program Expense/Total Expenses 788% 85% 90% Fundraising Expense/Contributed Revenue 0% 0% 0% Assets and Liabilities Total Assets $107,697 $96,766 $88,675 Current Assets $105,116 $93,834 $84,205 Long-Term Liabilities $0 $0 $0 Current Liabilities $16,134 $26,209 $35,144 Total Net Assets $91,563 $70,557 $53,531 Short Term Solvency Current Ratio: Current Assets/Current Liabilities Long Term Solvency Long-Term Liabilities/Total Assets 0% 0% 0% Top Funding Sources Top Funding Source & Dollar Amount Government Grants $180,322 Government Grants $246,000 Government Grants $173,000 Second Highest Funding Source & Dollar Contributions, Gifts, Contributions, Gifts, Contributions, Gifts, Amount and Grants $70,766 and Grants $27,563 and Grants $32,898 Third Highest Funding Source & Dollar Amount Fundraising Events $5,000 Fundraising Events $490 Fundraising Events $4,350 Capital Campaign Is the organization currently conducting a Capital Campaign for an endowment or the purchase of a major asset? No Capital Campaign Goal $0.00 Capital Campaign Raised-to-Date Amount $0.00 as of 0 Capital Campaign Anticipated in Next 5 Years? No State Charitable Solicitations Permit TN Charitable Solicitations Registration Yes - Expires Dec 2018 Registration No 0 GivingMatters.com Financial Comments Financials taken from 990. Prepared by Frasier, Dean, & Howard, PLLCComments by Nicole Rose 04/26/

13 Created Copyright 2018 The Community Foundation of Middle Tennessee 13