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Epilepsy Support Network of Orange County

 1500 Adams Ave, Ste. 301
 Costa Mesa, CA 92626
[P] (714) 916-0456 x none
[F] (657) 215-8402
www.esnoc.org
[email protected]
Janna Moore
FOUNDED: 2009
INCORPORATED: 2009
 Printable 1 Page Summary
 Printable Profile
Organization DBA Epilepsy Support Network of Orange County
Former Names --
Organization received a competitive grant from the community foundation in the past five years No
Employer Identification Number 27-0681680 00000

Summary


Mission StatementMORE »

The Epilepsy Support Network of Orange County is committed to building a community of support to improve the lives of those affected by epilepsy through education, programs, and advocacy.
 
Compassion drives our organization to urgently help children, teens and adults with epilepsy find relief from Seizures.
 
Our Vision is a Seizure Free Community. 

Mission Statement

The Epilepsy Support Network of Orange County is committed to building a community of support to improve the lives of those affected by epilepsy through education, programs, and advocacy.
 
Compassion drives our organization to urgently help children, teens and adults with epilepsy find relief from Seizures.
 
Our Vision is a Seizure Free Community. 

FinancialsMORE »

Fiscal Year 2018
Projected Expenses $284,555.00
Projected Revenue $315,900.00

ProgramsMORE »

  • Epilepsy Expert Series- Parents and Adults (English/Spanish)
  • Teen Club
  • Friday Friends Club
  • Intake and Referral (English/Spanish)
  • Community Outreach
  • Emotional Support Group for Parents

Revenue vs. Expense ($000s)

Expense Breakdown 2017 (%)

Expense Breakdown 2016 (%)

Expense Breakdown 2015 (%)

For more details regarding the organization's financial information, select the financial tab and review available comments.


Overview


Mission Statement

The Epilepsy Support Network of Orange County is committed to building a community of support to improve the lives of those affected by epilepsy through education, programs, and advocacy.
 
Compassion drives our organization to urgently help children, teens and adults with epilepsy find relief from Seizures.
 
Our Vision is a Seizure Free Community. 

Background Statement

The Epilepsy Support Network of Orange County is a 501(c)(3) nonprofit organization founded in 2009 by a committed group of compassionate, vision-driven people determined to provide crucial support and essential services to the estimated 32,000 Orange County residents living with epilepsy and their families. Epilepsy is a neurological disorder characterized by recurrent, unprovoked seizures. A seizure can be slight, such as staring and not being conscious of one's surroundings, to the most dramatic experience, a tonic-clonic (grand mal) seizure, in which the person may uncontrollably convulse, cry out, or lose consciousness. Many episodes can cause irreversible brain damage. Epilepsy is the third most common neurological disorder in the United States after Alzheimer's disease and stroke (Hauser, 1997). The challenges faced by people with epilepsy are unique and include improper diagnosis; ineffective treatments which cause many devastating side effects; social stigma; lack of education about epilepsy among patients, caregivers, doctors, and the population as a whole; and the life-altering effects that sudden, unpredictable seizures can cause. Our mission is to guide patients and families with epilepsy through the medical, psychological, social, and educational challenges that epilepsy uniquely presents until there is a cure. Today, ESNOC provides much-needed epilepsy-specific information and support to children, teens, and adults diagnosed with epilepsy, as well as their family members. We achieve our mission by offering information, support, and community made accessible through our eight monthly support groups/programs, three community outreach presentations, an annual fundraising walk, telephone and internet support. Driven by a strong sense of purpose, the leadership of ESNOC uses their knowledge to help families find relief from the vicissitudes of an epilepsy diagnosis. Our leadership team is comprised of 6 paid staff and 5 board members who, combined, have over 95 years experience working with epilepsy organizations in volunteer, staff, and board capacities. Today, we offer 26 epilepsy specific programs for individuals and their family members who are braving uncontrolled seizures.  

Impact Statement

Many of our new members with epilepsy come to us with difficulty understanding and managing their health care, complex insurance plans, hospital protocols, and physician procedures.  There is critical need for experienced and compassionate delivery of educational support services in our county.  We expeditiously guide parents and adults through the complex nature of this often-progressive disease in order to stop the seizures before brain damage occurs. Moreover, we are able to make a stronger impact by holding all of our support groups on the same evening and at the same location, thus serving the whole family. This reinforces our community while offering social opportunities for those who are often isolated due to their epilepsy. Additionally, we are able to make a greater impact while lessening our financial and volunteer resources.

Needs Statement

Epilepsy Support Network of Orange County is building its infrastructure and capacity to meet the demands for our services. Currently, the agency has identified the need to fund two new staff positions.  Our first priority is a part-time fund development staff position, which will be a newly created position. This individual will focus on securing corporate sponsorships for our annual Epilepsy Walk. This position is essential as the Epilepsy Walk generates unrestricted support to sustain our programs and operations. By adding this position, our Program Director, who is now coordinated the Walk,  will be able to more fully focus on delivering ESNOC's 26 programs.  The second position is an Intake Specialist who will provide a welcome and safe entry point to our organization and immediately assess the priority needs for the caller.  Many times our callers are facing an immediate seizure emergency and need direct help with finding epilepsy specialists, centers and emergency services.  ESNOC is always recruiting board and committee members. 

CEO Statement

Compassion drives our organization to urgently help children, teens and adults find relief from uncontrolled seizures. The Epilepsy Support Network of Orange County (ESNOC) was founded in 2009 by parents of children with epilepsy who were anguished by the inability to stop their children’s seizures, side effects and cognitive decline. They turned their heartbreak into action and have dedicated themselves to improving the lives of children, teens, and adults diagnosed with epilepsy in Orange County. ESNOC is the only organization of its kind in Orange County specializing in epilepsy, linking the community to specialty care and offering hope for a life free from seizures. We provide invaluable educational and supportive programs and services that advocate for the necessity of specialty care provided by epilepsy specialists at epilepsy centers.

Since our founding, ESNOC has developed a number of critical programs to provide epilepsy-specific information on treatments, professionals, research and resources delivered with compassion and experience. ESNOC programs include Information & Referral, Epilepsy 101, emotional and educational support groups for parents, children and adults, a Teen Club, and community presentations on Seizure Recognition and First Aid, as well as Building a Healthy Brain. These groups are facilitated by professionals who are qualified to address the specific epilepsy topic presented.

ESNOC works closely with epileptologists, neurologists and psychologists from CHOC, UC Irvine Epilepsy Center and Hoag Epilepsy Center, all of which refer patients to our organization. Physicians from these institutions serve on ESNOC's Advisory Board.

ESNOC expeditiously guides parents and adults through the complex nature of this often progressive disease, in order to stop the seizures before brain damage or death occurs.

Our cause is urgent as individuals with complicated epilepsies (35-40%) face a mortality rate four times that of the average population with most of the deaths occurring within five years of diagnosis. It is the youngest children in our community who have the highest incidence of epilepsy, ages 0-2 years. Because of our efforts, pediatric seizures are being identified and diagnosed quicker allowing for early intervention and expedited and effective treatments. There is much hope for individuals with epilepsy and we want to help each and every person braving this condition.


Board Chair Statement

ESNOC is able to make a meaningful difference in the lives of children, teens, adults and their caregivers, thanks to the dedicated commitment of many volunteers and donors.  Each year, our annual Epilepsy Walk brings thousands of people together, who have been impacted by epilepsy, to raise support for our work. From corporate sponsors to teams, and from group volunteers to individuals, this event is a reflection of the powerful impact that ESNOC has made since its founding in 2009. As Board President, I am so proud to be part of this exceptional organization--the only agency in Orange County solely focused on epilepsy advocacy, education and support. The work of ESNOC -- which directly impacts the health and well-being of infants, children teens and adults who struggle with epilepsy -- is solely supported by philanthropy. We are grateful for all of our partners and supporters...you!  
Kristy Kendle, President 
 

Other Ways to Donate/Volunteer

Epilepsy Support Network of Orange County welcomes involvement by the community through financial giving and volunteerism. Tax deductible donations can be made to Epilepsy Support Network of Orange County at 1500 Adams Ave., Ste. 301, Costa Mesa, CA 92626. We welcome volunteers to assist us with our annual Epilepsy Walk which is our major annual fundraising event as well as our programs and projects.  

Geographic Area Served

In a specific U.S. city, cities, state(s) and/or region.
Central Orange County
West Orange County
South Orange County
North Orange County
Epilepsy Support Network of Orange County serves all of Orange County, California with 20% of our members traveling to Orange County from surrounding counties (Los Angeles, Riverside, San Bernardino, Ventura, Santa Barbara) to partake in our unique and effective monthly programs. 

Organization Categories

  1. Diseases Disorders & Medical Disciplines - Epilepsy
  2. Human Services - Children's and Youth Services
  3. Health Care - Health Support

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Programs


Epilepsy Expert Series- Parents and Adults (English/Spanish)

Many individuals with epilepsy have a very difficult time understanding and managing their health care; the learning curve for epilepsy is very long and many treatment opportunities are missed due to delays in acquiring important information. This program provides a monthly meeting, as an educational and social forum, with epilepsy specific topics from expert speakers. Because 1 in 50 children and 1 in 100 adults will be diagnosed with epilepsy, our goal is to help parents stop their children's seizures and to help our adults obtain seizure control.  We provide information that will improve the quality of life for the individual with epilepsy and their family.
Budget  $68,000.00
Category  Human Services, General/Other Parenting Education
Population Served Adults
Program Short-Term Success  After attending our series, members will know the importance of being under the care of an Epileptologist and take action. 
Program Long-Term Success  For the majority of our members who attend our monthly Epilepsy Expert Series, they will learn best outcomes for seizure control or seizure freedom. 
Program Success Monitored By   Many of our members report seizure control and improved quality of life. 
Examples of Program Success  Parents are sending their kids of to college seizure free.

Teen Club

This group is a social skills support group -- just for teens -- is organized and facilitated by a staff member experienced in recognizing early signs of depression and anxiety, the two most common co-morbidities for teens and adults with epilepsy.  Most teens that do not gain seizure control do not have a peer group in which they can find acceptance and understanding. The ESNOC Teen Club provides a teen-focused social activity once per month where teens with epilepsy interact with other teens some who have epilepsy and some do not. In this setting, teens with epilepsy learn appropriate social communication skills by interacting with “typical” teens in a safe and supportive environment. While teens attend this support group, parents attend the Parent Educational Expert Series or the Emotional Support Group for Parents and siblings attend the Friday Friends Club.
Budget  $16,000.00
Category  Youth Development, General/Other Youth Development, General/Other
Population Served Adolescents Only (13-19 years)
Program Short-Term Success  After attending a few Teen Club sessions with their peers, teens begin to improve their self confidence, gain appropriate social skills helping to reduce social anxiety. Appropriate social skills gained from neurotypical teens attending the Teen Club, allow teens affected by epilepsy to transfer and generalize these skills in their social settings. 
Program Long-Term Success  For teens attending Teen Club, they gain appropriate social skills and report making new friends with these skills. 
Program Success Monitored By  Parents report the changes and growth in their teens at home and school and continue to bring them to teen club.  When teens stop coming to the teen club we call an inquire and most responses indicate teens have been able to make and retain friend in their community.  
Examples of Program Success  A number of our teen 'graduates' have been able to create their very own support system of friends, attain jobs, go to college and live independently. These are all tremendous accomplishments. 

Friday Friends Club

Friday Friends Club, is offered to parents attending concurrent support group meetings.  We have two special needs professionals supervising the care for children affected with epilepsy and their siblings.  The Friday Friends Club offers these children a safe, supporting, nurturing environment where children meet with their friends monthly. The availability of this group enables parents to attend the concurrent support group meetings without the worry for their children’s well-being while away from them.
Budget  $26,000.00
Category  Youth Development, General/Other Youth Development, General/Other
Population Served Children and Youth (0 - 19 years)
Program Short-Term Success  After joining us at Friday Friends Clubs for the first time, the children already begin to make friends and experience self worth. 
Program Long-Term Success   

For children attending our Friday Friends Club monthly, they stay socially connected and prevent or overcome the debilitating effects of isolation and depression that can follow them into adulthood and diminish their quality of life. 

Program Success Monitored By  Parents report that their children attending Friday Friends Club, have grown socially and developed crucial skills they were lacking. 
Examples of Program Success 

 Friday Friends Club has grown from averaging 10 children on a monthly basis to about 20.  


Intake and Referral (English/Spanish)

Callers to ESNOC will receive immediate support and education through individualized attention for best possible seizure and symptom control.  Callers, often traumatized by the experience of watching their loved one have a seizure and highly fearful it will happen again, are connected to our most appropriate programs and community of support.  Our epilepsy specific educational programs and services, referrals to insurance/medication resources, epileptologists and counseling groups can forever change their lives for the better.

Budget  $62,350.00
Category  Health Care, General/Other Health Care Referrals
Population Served Adults
Program Short-Term Success  After making initial contact, our callers are offered hope and given the tools to navigate the chronic condition of epilepsy. 
Program Long-Term Success 

With our patient advocacy, individuals with epilepsy are overcoming the barriers of care, and receiving the proper diagnosis and treatment they deserve at one of our local Epilepsy Centers, under the care of an Epileptologist. 


Program Success Monitored By   Our programs continue to increase in attendance. 
Examples of Program Success  Families' quality of life have improved since connecting with our group.

Community Outreach

Our Community Outreach includes Epilepsy 101, Seizure Recognition and First Aid, and Building a Healthy Brain. All outreach programs are available to individual, group or organization that seeks to educate themselves about epilepsy. We tailor our 90-minute presentation to the attendees, provide informative handouts, show a video if applicable, and provide questions and answers. These following presentations are available to any sized group, free of charge, at the convenience of their location.
Budget  $21,000.00
Category  Education, General/Other Teacher & Faculty
Population Served Adults
Program Short-Term Success  Epilepsy Support Network of Orange County has educated over 5,000 community members in 2017.  
Program Long-Term Success  For schools and organizations who schedule our presentation, their staff who attend report feeling more confidant and comfortable in responding to a various types of seizures. 
Program Success Monitored By 

Presentations are being referred and requested by organizations and schools that have seen the impact on staff that have attended. 

Examples of Program Success  Evaluations are completed with overall satisfaction of presentation and epilepsy knowledge.

Emotional Support Group for Parents

A free, one hour group session with a clinical psychologist allows parent to discuss the issues specific to raising a child with epilepsy. This is a once a month meeting.
Budget  $26,000.00
Category  Mental Health, Substance Abuse Programs, General/other Peer Counseling
Population Served Adults
Program Short-Term Success  We watch countless parents go from denial to acceptance of their child's diagnosis, and begin to use the emotional tools to navigate epilepsy and no longer be overwhelmed by fear and/or depression. 
Program Long-Term Success  Parents report home life improving for their family, and sense of community for all members. 
Program Success Monitored By  Medial and school staff report parents being more emotionally stable after joining our group and attending sessions with our clinical psychologist. 
Examples of Program Success  Everyday we see parents mentoring other parents, sharing their experience, strength and hope, after attending our sessions and working their struggles and challenges of having a child with epilepsy. 

Management


CEO/Executive Director Mrs. Janna L. Moore MPA
CEO Term Start Feb 2013
CEO Email [email protected]
CEO Experience

Janna L. Moore has been the Executive Director for the Epilepsy Support Network of Orange County since February of 2013.  She is one of the founders of the organization and served on the board of directors before becoming the Director of Programs in 2009.  She became Acting Executive Director in 2012 and was then promoted to her current position. Janna leads the Epilepsy Support Network with passion and conviction to make positive and lasting changes for all people with epilepsy. She has 30 years experience working for non-profits.  She attended Portland State University and earned a Bachelor's of Science Degree.  She attained her Master's Degree in Public Administration from California State University, Long Beach.  

Former CEOs and Terms

Name Start End
Jennifer Gunther -- --

Senior Staff

Name Title Experience/Biography
-- -- --
Ms. Meghan Metzger Director of Programs --
Mrs. Janna L. Moore MPA Executive Director --

Awards

Award Awarding Organization Year
Professional Achievement Award Janna L. Moore, MPA 2005
Women Who Make a Difference in Orange County Janna L. Moore, MPA 2005
Golden Oak Leaf Service Award California Parents and Teachers Association 2004

Affiliations

Affiliation Year
United Way Member Agency 2014

External Assessments and Accreditations

External Assessment or Accreditation Year
-- --

Collaborations

ESNOC collaborates with a number of organizations including Hoag Memorial Hospital Presbyterian, Children's Hospital of Orange County, UCI Medical Center, Kaiser Permanente, and community partners including 211, Help Me Grow, Children and Families Commission, OC Dept. of Education, OC School Nurses Organization, Regional Center, MOMS Orange County, school districts and Orange County Nurse's Organization.

Staff Information

Number of Full Time Staff 3
Number of Part Time Staff 3
Number of Volunteers 11
Number of Contract Staff 3
Staff Retention Rate % 100%
Staff Professional Development Yes

Staff Demographics

Ethnicity African American/Black: 1
Asian American/Pacific Islander: 1
Caucasian: 3
Hispanic/Latino: 1
Native American/American Indian: 0
Other: 0
Other (if specified): 0
Gender Female: 6
Male: 0
Not Specified 0

Plans & Policies

Organization has Fundraising Plan? Yes
Organization has Strategic Plan? Yes
Years Strategic Plan Considers --
Management Succession Plan Yes
Organization Policies And Procedures Yes
Business Continuity of Operations Plan Yes

Risk Management Provisions

Nondiscrimination Policy Yes
Whistle Blower Policy Yes
Document Destruction Policy Yes
Directors and Officers Insurance Policy Yes

Reporting and Evaluations

Management Reports to Board? Yes
CEO Formal Evaluation and Frequency Yes Annually
Senior Management Formal Evaluation and Frequency Yes Annually
Non Management Formal Evaluation and Frequency Yes Annually

Government Licenses

--

CEO Comments

--

Foundation Comments

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Governance


Board Chair President Kristy Kendle
Board Chair Company Affiliation Sales and Marketing Operations VP for QBE North America
Board Chair Term Jan 2018 - Jan 2020
Board Co-Chair --
Board Co-Chair Company Affiliation --
Board Co-Chair Term -

Board Members

Name Company Affiliations Status
Malena Clements MEd -- --
Treasurer Tracy Dizon-Salazar PhD -- --
President Kristy Kendle President --
Debbie Merced -- --
Secretary Kathy Nichols J.D. -- --

Constituent Board Members

Name Company Affiliations Status
-- -- --

Youth Board Members

Name Company Affiliations Status
-- -- --

Additional Board Members and Affiliations

Name Company Affiliations Status
Dr. Tracy Dixon-Salazar Founder of Innovations, LLC NonVoting
Dr. Richard Kim Neuro-Surgeon NonVoting
Dr. Phyllis Larkin Clinical Psychologist NonVoting
Dr. Mona Sazgar Epileptologist for UCI Epilepsy Program NonVoting
Dr. Mary Zupanc Director of CHOC Epilepsy Program NonVoting

Board Demographics

Ethnicity African American/Black: 0
Asian American/Pacific Islander: 0
Caucasian: 4
Hispanic/Latino: 1
Native American/American Indian: 0
Other: 0
Other (if specified): 0
Gender Female: 5
Male: 0
Not Specified 0

Board Information

Board Term Lengths 2
Board Term Limits 2
Board Meeting Attendance % 90%
Written Board Selection Criteria Yes
Written Conflict Of Interest Policy Yes
Percentage of Monetary Contributions 100%
Percentage of In-Kind Contributions 100%
Board Orientation Yes

CEO Comments

The Epilepsy Support Network of Orange County takes great care to live by our mission, values and vision.  Our standard of "best practices" ensures the highest quality of programs and services delivered to our members.  Our Board of Directors and our collaborative partners share and instill these values which provide an enriching cross-fertilization of information and ideas that provide for healthy and sustainable growth.   Epilepsy has several unique challenges that must all be addressed.  No one entity can address the all the issues and that is why we collaborate all of our epilepsy centers and many non-profit entities.  Our biggest challenge is funding from affected families/members as epilepsy most often strikes infants, ages 0-2 years, when families are just starting out and many are hard hit with the financial burden of a chronic disease.  We work diligently to be the easiest part of epilepsy, not wanting to add to a family's financial burden.   Our organization relies on unique fundraisers allowing families to participate, donating what they can while helping cultivate new donors. We also rely on grant funding, third party funders, corporate donations and individual donors to help us fulfill our mission.
 
Lingering stigma associated with epilepsy is addressed in every program we provide.  Eradicating stigma is essential in attracting committee and board members who can increase the momentum of our progress.
 
Everyone knows someone with epilepsy: uncontrolled seizures, seizure disorder.  One in twenty six people, this year, will be diagnosed with epilepsy.  In the United States, fifty thousand people will die this year due to a seizure that did not stop or an accident related to a seizure.  We invite you to join our cause because every seizure is urgent.  It is our goal for each member's last seizure to truly be their last seizure.  
 
 
 

Foundation Comments

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Standing Committees

  • Advisory Board / Advisory Council
  • Board Governance
  • Finance
  • Program / Program Planning
  • Special Events (Golf Tournament, Walk / Run, Silent Auction, Dinner / Gala)

Financials


Revenue vs. Expense ($000s)

Expense Breakdown 2017 (%)

Expense Breakdown 2016 (%)

Expense Breakdown 2015 (%)

Fiscal Year Jan 01, 2018 to Dec 31, 2018
Projected Revenue $315,900.00
Projected Expenses $284,555.00
Form 990s

2017 990

2016 990

2015 990

2014 990

2013 Form 990

Audit Documents --
IRS Letter of Exemption

IRS Letter of Determination

Prior Three Years Total Revenue and Expense Totals

Fiscal Year 2017 2016 2015
Total Revenue $247,787 $188,957 $194,801
Total Expenses $236,054 $195,474 $183,831

Prior Three Years Revenue Sources

Revenue By Revenue Source
Fiscal Year 2017 2016 2015
Foundation and
Corporation Contributions
$34,793 $30,908 $47,190
Government Contributions $0 $0 $0
    Federal -- -- --
    State -- -- --
    Local -- -- --
    Unspecified -- -- $0
Individual Contributions -- -- --
Indirect Public Support -- -- $0
Earned Revenue $1,300 -- $0
Investment Income, Net of Losses $104 $90 $106
Membership Dues -- -- $0
Special Events $167,804 $128,109 $147,505
Revenue In-Kind $43,786 $29,850 $0
Other -- -- $-125,921

Prior Three Years Expense Allocations

Expense By Type
Fiscal Year 2017 2016 2015
Program Expense $195,892 $162,048 $126,120
Administration Expense $28,086 $29,544 $40,252
Fundraising Expense $12,076 $3,882 $17,459
Payments to Affiliates -- -- $0
Total Revenue/Total Expenses 1.05 0.97 1.06
Program Expense/Total Expenses 83% 83% 69%
Fundraising Expense/Contributed Revenue 6% 2% 9%

Prior Three Years Assets and Liabilities

Assets and Liabilities
Fiscal Year 2017 2016 2015
Total Assets $173,119 $160,572 $171,537
Current Assets $171,530 $157,492 $170,145
Long-Term Liabilities -- -- $0
Current Liabilities $5,086 $4,303 $3,580
Total Net Assets $168,033 $156,269 $167,957

Short Term Solvency

Fiscal Year 2017 2016 2015
Current Ratio: Current Assets/Current Liabilities 33.73 36.60 47.53

Long Term Solvency

Fiscal Year 2017 2016 2015
Long-term Liabilities/Total Assets 0% 0% 0%
Endowment Value $0.00
Spending Policy Income Only
Percentage(If selected) --
Are you currently in a Capital Campaign? No
Capital Campaign Purpose --
Campaign Goal --
Capital Campaign Dates -
Capital Campaign Raised-to-Date Amount --
Capital Campaign Anticipated in Next 5 Years? --

CEO Comments

--

Foundation Comments

Summary financial data is per the Form 990s and consultation with the organization. Foundation/corporate and individual contributions are combined under Foundation and Corporation Contributions.