Epilepsy Foundation of Oklahoma

Transcription

1 Epilepsy Foundation of Oklahoma Nonprofit Profile Contact Information Nonprofit Epilepsy Foundation of Oklahoma Address N. May Ave, Ste 108 Oklahoma City, OK Oklahoma County Phone (405) Fax Website Contact Name Jenniafer Walters Contact At a Glance Organization's type of tax exempt status Former Names Public Supported Charity Epilepsy Association of the Sooner State Epilepsy Association of Oklahoma Year Founded 1978 IRS Ruling Year

2 Registered with the Secretary of State? State Registration Expiration Jan 2015 Other ways to donate support, or volunteer Mail a check Volunteer opportunities Donate with PayPal on our website Donate through GiveSmartOKC Statements Mission Our mission for the Epilepsy Foundation of Oklahoma 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. Background The Epilepsy Association of Oklahoma began as a support group which was part of the Wesley United Methodist Church in Oklahoma City. However the mission soon expanded to include the enlightening of all the people of Oklahoma about epilepsy, including those who have epilepsy and their families and friends as well as police, firemen, employers, schools, etc. 2

3 Impact MORE PEOPLE DIE FROM EPILEPSY THEN BREAST CANCER! 65 MILLION: Number of people around the world who have epilepsy.3 MILLION: Number of people in the United States who have epilepsy.1 IN 26 people in the United States will develop epilepsy at some point in their lifetime.150,000: Number of new cases of epilepsy in the United States each yearone- THIRD: Number of people with epilepsy who live with uncontrollable seizures because no available treatment works for them. 6 OUT OF 10: Number of people with epilepsy where the cause is unknown. DOLLARS IN OKLAHOMA: Emergency Seizure Medication Assistance & Discount Drug Cards CDC Program - Education About Seizures For Schools & Nurses, Communities & Work Force Annual Epilepsy Camp & Health Fairs To Educate Epilepsy Literature Support Groups Throughout Oklahoma Website With Resources & Social Media Office Staff & Monthly Newsletter CAN Program CAN MISSION: A S A P A - Raise Awareness S - Service To Community A - Advance / Fundraising P Participate Needs Volunteer's for Events and Health Fairs, On going funding partnership with Companies or related Organization, Medical assistants with pharmaceuticals. 3

4 CEO/Executive Director Statement Update from the Executive Director of the NEW "Epilepsy Foundation of Oklahoma" Welcome and thank you for visiting the Epilepsy Foundation of Oklahoma GiveSmart site. We are honored that you have joined us, and I hope you will find all the information you need here. This year 2016, the Epilepsy Foundation of Oklahoma celebrated a great victory. After 38 years of operating independently we became a chapter of the Epilepsy Foundation of America. With their unwavering support and assistance we'll be able to make tremendous strides in our community. In my role as Executive Director, I have the privilege of working with wonderful doctors and members of our community who strive to improve the lives of those living with epilepsy every day. I will continue my fight in raising AWARENESS, SERVICE to our community, our ADVANCEMENT in fundraising and PARTICIPATION in activities throughout the state, with the help and support of the Epilepsy Foundation of America. We are committed to operating with an abundance of energy to bring our members information and referral services they need. We are passionate about educating the community about seizures and epilepsy, in order to reduce the stigma that many individuals face. Thank you for your on going support throughout the years and always remember YOUR NOT ALONE and we're here to help. I'm very excited for the future of the new Epilepsy Foundation of Oklahoma Jenniafer Walters Executive Director Board Chair Statement I challenge each and everyone of you to speak out about Epilepsy and NOT be afraid of Epilepsy. A tongue has NO bone but it can BREAK a heart, so...watch what you say to someone. Epilepsy is Not a MENTAL illness, Epilepsy is Not a CURSE, Epilepsy is Not CONTAGIOUS, Epilepsy is a Disorder, Not a DISEASE. So don't be unaware, educate yourself. Area Served Area Served Geographic Area Served Oklahoma - Statewide State of Oklahoma Service Categories Primary Organizational Category Secondary Organizational Category Diseases Disorders & Medical Disciplines/Epilepsy Diseases Disorders & Medical Disciplines/Epilepsy Programs Educational Programs 4

5 Description Category CDC Seizure Training for School Personnel, School Nurses, Law Enforcement (We have our CLEET #), First Responders and our new Senior Program. We provide FREE seizure training for schools, living centers, work place, law enforcement people any facilities to educate on seizures. We will leave a seizure kit, DVD's and material to help each place long after our training. We also provide seizure helmets and AmTrykes for people in need. Diseases, Disorders & Medical Disciplines, General/Other Epilepsy Strategy Population Served Program Short-term Success Program Long-term Success Program Success Monitoring Examples of Program Success General/Unspecified People/Families with of People with Disabilities EFO is educating schools, work places, senior living centers, people and our first responders on seizures and how to take care of people with epilepsy, signs to look for and that their ordinary people too. EFO has provided CDC Seizure Training to over 1200 school personnel and nurses, over 65 Law Enforcement and over 160 senior in centers. EFO has given away 5 AmTrykes to children with epilepsy and 75 seizure helmets to families with child that have epilepsy and to schools. Epilepsy Foundation of Oklahoma and the CDC We have served almost 1500 Oklahoman's educating them on epilepsy, help 5 children get mobile and out of their homes and provided 75 helmets to protect children's head. Epilepsy Awareness & Brochures Description Category We provide awareness in our communities and out reach programs. Our website provides links to key educational resources and opportunities available in the community in the State of Oklahoma.Social networking through Facebook is also provided on our website. EFO are partners in 7 On The Road conferences across the state in rural areas, we help with Health Fairs for all ages, Doctors Educational Classes 4 a year, Epilepsy Symposium each year and Epilepsy Webinars. EFO are partners with Sooner Start, we help with transitioning of children with disabilities into school also apart of Caregivers Coalition helping caregivers with their loved ones that have a disability of all ages. EFO can mail out epilepsy material across Oklahoma. At the State Capitol each year for Disability Awareness Day. Support Groups across our state. Diseases, Disorders & Medical Disciplines, General/Other Epilepsy Strategy Population Served General/Unspecified People/Families with of People with Disabilities Program Short-term Success Program Long-term Success Program Success Monitoring Examples of Program Success EFO has reached over 5000 people in the state of Oklahoma educating on epilepsy, providing resources and material/brochures for families, caregivers and individuals. Epilepsy Foundation of Oklahoma, Sooner Success, Sooner Start, Caregivers Coalition and Epilepsy Foundation of America EFO goes where we are needed to provide materials, resources for families, caregivers and individuals needing help. 5

6 Community Action Network Description Category The core principle of the Community Action Network for Epilepsy is to establish volunteer groups across the country. The groups will support individuals living with epilepsy by enabling and advancing the mission of the Epilepsy Foundation. The Foundation s mission 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. Involvement where you live and work creates partnerships that raise awareness about epilepsy and the programs the Foundation provides. You have the opportunity to support those with epilepsy by bringing programs and services directly into your communities. Whether it s creating awareness, informing people about services, discovering new fundraising opportunities, or participating in innovation and public policy advocacy, these powerful Community Action Networks build lasting relationships in your neighborhood. Diseases, Disorders & Medical Disciplines, General/Other Epilepsy Strategy Population Served Program Short-term Success General/Unspecified People/Families with of People with Disabilities Our CAN groups raised over $5000 in 6 months to benefit the EFO and our programs here in Oklahoma. Program Long-term Success EFO has 5 regions set-up in Oklahoma with 9 Team Leaders and 25 Epilepsy Ambassadors to help the leaders. Having these wonderful volunteers across Oklahoma that understand the struggles of EPILEPSY and what families go through, they help the EFO connect with them and get resources to people with epilepsy. We fight together in educating and letting everyone know "They are not alone in this battle". Program Success Monitoring Epilepsy Foundation of Oklahoma and our National office. Examples of Program Success A - S - A - P A - Raise Awareness S - Services to our Community A - Advance Programs P - Participate in Fundraising Annual Epilepsy Walk Description Category Each year in OKC there is an Annual Walk, that we sponsor and support. Philanthropy, Voluntarism & Grantmaking, General/Other Fundraising Strategy Population Served Families Children and Youth (0-19 years) General/Unspecified Program Short-term Success Program Long-term Success Program Success Monitoring Examples of Program Success Let Oklahoma families know we are here to help support them, let them know their not alone, raise awareness, educate and raise funds for our programs, epilepsy material and for research on epilepsy. Epilepsy Foundation of Oklahoma EFO Walk is a family fun event for all ages. 6

7 Medication Assistance Program Description Category EFO will provide seizure medication assistance for 1 month, help with long term medication with a Personal Assist Program and our discount medication card. Human Services, General/Other Emergency Assistance Strategy Population Served Program Short-term Success Program Long-term Success Program Success Monitoring Examples of Program Success General/Unspecified People/Families with of People with Disabilities Stepping in and paying for an one month prescription we have helped over 60 individuals in a year. The Personal Assist Program is for 6-12 months, we have helped over 1500 people in a year. Epilepsy Foundation of Oklahoma Our Executive Director will meet the individual at the pharmacy and pay for the medication, the Personal Assistance Program we mail out an application or set a meeting up to help the patient with getting everything filled out and processed, we can mail out our discount proscription card to anyone. Disaster Programs Voluntary Organizations Active in Disaster (VOAD) Member No Comments on Programs CEO/Executive Director/Board Comments We at the Epilepsy Foundation of Oklahoma are working hard to get the word out about "Epilepsy". It's not something to be embarrassed about,1 out of 26 people and over 3.5 million people have epilepsy in the U.S. More people die from epilepsy then Breast Cancer. So the Epilepsy Foundation is educating and training the people of Oklahoma and providing help where we can. Every donation helps our cause in getting the CDC Seizure Training Programs, literature, medication and support groups. The Epilepsy Foundation of Oklahoma personally "Thank You" for your support in our mission. Staff & Management CEO/Executive Director Jenniafer Walters Start Date Sept jwalters@efa.org CEO/Executive Director Experience I'm proud to be apart of this organization here in Oklahoma. My daughter has had epilepsy all of her life. I have walk beside her on this journey and have seen first hand the struggles and heartache she has gone through. She has endured more than a person should for a young adult. As always, I'll fight this battle with her and let her know she is not alone. I will always speak up and advocate for anyone with epilepsy. 7

8 Staff Information Number of Full-time Staff 1 Number of Part-time Staff 0 Number of Contract Staff 1 Number of Volunteers 3 Staff Retention Rate 100 % Are professional development opportunities provided? Does CEO/Executive Director have formal evaluations? Management Reports to Board? Staff Demographics - Gender Male 1 Female 4 Organizational Plans Fundraising Plan Policy against commission-based compensation for fundraising consultant Communication Plan Strategic Plan Management Succession Plan Organization Policies and Procedures No Under Development Under Development Under Development Under Development Policies Nondiscrimination Policy Whistle Blower Policy Document Destruction Policy Directors and Officers Insurance Policy No No Government Licenses Is your organization licensed by the government (federal, state and/or local)? Comments on Staff & Management CEO/Executive Director/Board Comments While we don't have a formal fundraising plan, the majority of our activities raise funds for our organization. Events such as our, annual 5K Run in March,annual Triathlon in July and an Epilepsy Walk in November followed by a dinner and our new Community Action 8

9 Network. Governance Board Chair Company Affiliation Ms. Shelly Douglas Term Jan 2017 to Jan Cyberonics,Community Health Charities,Community Foundation,Lundbeck LLC.,Eisai Inc., Supernus Pharmaceuticals,Sunovion Pharmaceuticals, Ambucs,NeuroPace Board of Directors List Current as of Feb 01, 2017 Name Affiliation Status Steve Carroll Cyberonics Voting Shelly Douglas Community Health Charities Voting Derick Mashaney Volunteer Voting Rachelle McCoy Scott Mullins Eisai Inc. Epilepsy Sales Specialist Voting Eisai Inc. Epilepsy Sales Specialist Voting Charlotte Richardson AAA Insurance Voting Jill Ryan St. Anthony Hospital Physician Voting Philip A. Schovanec Attorney Voting Ryan Sites GeneDX Voting Lisa Spencer Community Volunteer Voting Jenniafer Walters Epilepsy Association of Oklahoma Voting Kevin D. Walters Xpedx, Senior Account Manager Voting Meredith Wilkerson, PHD Lynn Institute Clinical Research Coordinator Voting Board Demographics - Gender Male 6 Female 6 Governance Information Board Term Lengths Board Term Limits 3 years 1 terms Number of Full Board Meetings Annually 6 Board Meeting Attendance % 95 % Percentage of Board Making Monetary Contributions to the Organization Percentage of Board Making In-Kind Contributions to the Organization 90 % 100 % 9

10 Board Orientation Constituency Includes Client Representation Written Board Selection Criteria? Written Conflict of Interest Policy? Standing Committees Advisory Board / Advisory Council Youth By-laws Community Outreach / Community Relations Education Capital Campaign Endowment Program / Program Planning Research Division Special Events (Golf Tournament, Walk / Run, Silent Auction, Dinner / Gala) Volunteer Student Affairs Donor Services Legislative Marketing Project Oversight Advisory Board Name Shirley Bracken Andee Cooper Derick Mashaney Cara O'Daniel Phillip Schovanec Beverly Young Affiliation Arthur TARC EAO Volunteer Cyberonics Attorney w/moricoli, Harris & Cottingham & Hurst Work Activity Center Inc. Comments on Board & Governance CEO/Executive Director/Board Comments All of our board members volunteers their time, no body gets paid. Each and everyone of our board members have been touched by Epilepsy. They have epilepsy their self or a family member, friend or on the job. The board members of Epilepsy Foundation have compassion, understanding and experience to give to others. Financials Current Fiscal Year Oct 01, 2015-Sept 30,

11 Current Year Budgeted Total Income $29,048 Current Year Budgeted Total Expenses $35,045 Prior Three Years' Financial History Income and Expenses Fiscal Year Total Revenue $48,142 $29,248 $36,385 Total Expenses $38,473 $34,891 $23,294 Revenue Less Expenses $9,669 ($5,643) $13,091 Income Sources Fiscal Year Contributions Foundation and Corporation $23,555 $21,649 $13,875 Contributions Government Contributions $0 $0 $0 Federal State Local Unspecified Individual Contributions Indirect Public Support Earned Revenue Investment Income, Net of Losses $7,668 $7,599 $6,958 Unrealized Gain/Loss Membership Dues $150 Special Events $16, $15,364 Revenue In-Kind Other $38 Expense Allocation Fiscal Year Program Expense $35,370 $31,757 $23,294 Administration Expense Fundraising Expense $3,103 $3, Payments to Affiliates Total Revenue/Total Expenses Program Expense/Total Expenses 92% 91% 100% Fundraising Expense/Contributed Revenue 8% 14% 0% Assets and Liabilities Fiscal Year Total Assets $42,575 $32,906 $38,549 Current Assets $40,521 $30,852 $36,495 Long-Term Liabilities Current Liabilities Total Net Assets $42,575 $32,906 $38,549 Short-term Solvency 11

12 Fiscal Year Current Ratio: Current Assets/Current Liabilities Long-term Solvency Fiscal Year Long-Term Liabilities/Total Assets 0% 0% 0% Top Funding Sources Fiscal Year Top Funding Source & Dollar Amount Foundation & Corporation $23,555 Foundation Corporations & $21,649 Special Events $15,364 Second Highest Funding Source & Dollar Special Events Investment Income Foundation & Amount $16,919 $7,599 Corporation $13,875 Third Highest Funding Source & Dollar Amount Investment Income $7, Investment Income $6,958 Endowment and Other Financial Information Endowment? Endowment Value $166, Endowment Spending Policy Endowment Spending Policy Percentage (if selected) Credit line? Rreserve fund? Tax Credits? Percentage 5 % No Capital Campaign Currently in a Capital Campaign? No Comments on Financials CEO/Executive Director/Board Comments As of April 2016 the Epilepsy Association of Oklahoma merged with the Epilepsy Foundation of America and our name changed to the Epilepsy Foundation of Oklahoma and we became a chapter so financials will reflect Oklahoma too. This merger will only strengthen our ability to assist our fallow Oklahoman's with our many existing programs. With the strength of our national organization, behind us we hope to bring even more programs to the state. 12

13 Foundation Staff Comments All historical financial information is from IRS Form 990s. The financial information presented is obtained from the following sources: IRS Form 990, independent audit reports, financial statements board approved when available, and supplemental information from the organization. We do not warrant or guarantee the timeliness, errors or inaccuracies. With respect to information regarding financial performance, nothing on this website should be interpreted as a statement or interpretation by OCCF staff. Organizations with a GiveSmartOKC profile are responsible for updating information annually within 45 days following the end of their fiscal year. Created Copyright 2017 Oklahoma City Community Foundation 13