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Epilepsy Foundation New England Inc.

 335 Main Street, Unit 8
 Wilmington, MA 01887
[P] (617) 506-6041 x 100
[F] (617) 506-6047
www.epilepsynewengland.org
slinn@epilepsynewengland.org
Susan Linn
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INCORPORATED: 1984
 Printable Profile (Summary / Full)
EIN 22-2505819

LAST UPDATED: 01/10/2019
Organization DBA 22-2505819
Former Names Epilepsy Foundation MA RI (2010)
Organization received a competitive grant from the Boston Foundation in the past five years No

Summary

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Mission StatementMORE »

Our mission is to help people and families affected by epilepsy in New England. Epilepsy Foundation NE is an independent affiliate of Epilepsy Foundation of America, whose 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. Our Vision is "Help for today, Hope for tomorrow."

Mission Statement

Our mission is to help people and families affected by epilepsy in New England. Epilepsy Foundation NE is an independent affiliate of Epilepsy Foundation of America, whose 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. Our Vision is "Help for today, Hope for tomorrow."

FinancialsMORE »

Fiscal Year July 01, 2018 to June 30, 2019
Projected Income $1,686,250.00
Projected Expense $1,685,966.00

ProgramsMORE »

  • Community Education
  • Epilepsy Resource and Support Center
  • The Purple Camp

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

Our mission is to help people and families affected by epilepsy in New England. Epilepsy Foundation NE is an independent affiliate of Epilepsy Foundation of America, whose 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. Our Vision is "Help for today, Hope for tomorrow."

Background Statement

Epilepsy Foundation New England (EFNE) is a 501 (c) (3) nonprofit organization whose 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. EFNE is an independent affiliate of Epilepsy Foundation of America; we serve the approximately 100,000 people in Maine, Massachusetts, New Hampshire, and Rhode Island effected by epilepsy and the people who care for them. Our vision statement is "Help for Today, Hope for Tomorrow."

The services we provide are employment services; camp for children and teens; Youth Councils; Helpdesk; Resource Center; retreats for adults; scholarships; emergency financial aid to people in need; community education for children, school personnel, first responders, and employers; conferences for health care providers and for families; fundraising for research; public policy advocacy; support groups; bereavement support; community connections; and, public awareness and engagement.

Established in 2009, the EFNE Donation Center is an LLC of EFNE. Thanks to a partnership with Savers, the Donation Center collects clothing and household items that are resold through 14 regional thrift stores. Proceeds fund approximately $500,0000 in EFNE programs and services per year.

EFNE is governed by a 20-member volunteer Board of Directors. A 30-member Professional Advisory Board provides Strategy, Advice, Outreach to EFNE and act as Ambassadors for our mission. ME, NH, and RI Leadership Councils provide leadership for the epilepsy community in their regions and ensure that EFNE is attuned to each area’s strengths and challenges. Staffed by regional Field Service Managers, Councils contribute to networking and community-building activities for the epilepsy community in their area; conduct outreach to help build a network of people with epilepsy and their loved ones in their area; select and help run programs and activities that engage and connect people with epilepsy and their loved ones to each other and to the Foundation; support fundraising activities such as our Walk for Epilepsy; act as ambassadors for EFNE; support advocacy work in the region/state; and work as individuals and as a Council to implement strategies that decrease the stigma of epilepsy.

EFNE’s FY18 operating budget is $1.8 million; this is an 80% increase from FY17. The Foundation has invested $2 million to begin building an endowment.


Impact Statement

The Foundation has been under major transformation over the past two years. Major milestones that mark the resulting transformation are:

Epilepsy Resource and Support Center: A 2016-2017 evaluation and rethinking of our resources and supports led to a relaunch of the Resource and Support Center in 2017. The new center provides live help desk services alongside a comprehensive library of online tools and resources to educate and support individuals, families, and caregivers. In the 1st half of 2017, we helped more than 1,000 people through the Center.

Young Adult Leaders: Last fall EFNE launched three new programs focused on engaging and empowering young adults. To-date, more than 100 individuals ages 13-29 have gotten involved in our Athletes vs. Epilepsy®, Teens Speak Up®, and Leadership Council programs. We are connecting young people to each other and encouraging our next generation of leaders.

Tripled Camp Programs: Over the past year, we have tripled the size and number of our camp offerings (nearly 200 campers), which have been rebranded as The Purple Camp. Day and sleepaway camps are available for children, families, young adults, and adults.

Employment Services: In December 2016, we relaunched our Employment Services Program. Now serving 60 people, services include assessment, coaching, workshops, job placement, and more. We also established a supported job training program based on employer needs and we are developing strategic employer partnerships.

Volunteers: From our epilepsy runs and walks to our programming and services, EFNE’s hundreds of volunteers bring passion, optimism, creativity, and experience to our organization. In October 2016, EFNE hired its first Volunteer Coordinator to work with our volunteers, providing support and leveraging their expertise. Volunteers now approach 300 giving individuals.


Needs Statement

Our top 5 most pressing needs are: (1) Growing our programs for children, teens, and young adults, including camps; (2) Expanding our program reach into Central and Western Massachusetts; (3) Providing emergency financial assistance and scholarships to more of our constituents; (4) Educating individuals, school personnel, nurses, and first responders on the basics of epilepsy; and (5) Growing our endowment.

CEO Statement

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Board Chair Statement

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Geographic Area Served

STATEWIDE
STATEWIDE

We serve Massachusetts, Rhode Island, New Hampshire, and Maine.

Organization Categories

  1. Human Services - Family Services
  2. Diseases Disorders & Medical Disciplines - Epilepsy
  3. Education - Alliances & Advocacy

Independent research has been conducted on this organization's theory of change or on the effectiveness of this organization's program(s)

Under Development

Programs

Community Education

Working with our 30-member Professional Advisory Board and world class epilepsy centers, we provide an array of educational programs that include My Friend Matty, a curriculum for preschoolers and elementary school aged children, to credit-bearing classes for nurses, and training for police, fire, and paramedics.
Budget  $236,714.00
Category  Education, General/Other School Health Services
Population Served General/Unspecified Children Only (5 - 14 years) Other Health/Disability
Program Short-Term Success 

Over the past year, we provided 31 trainings attended by 600 people. In addition, educational conferences in each state are tailored to meet the needs of the community.

We customize trainings on request and we provide workshops online. Free! This summer, we were pleased to support Massachusetts General Hospital to convene a conference on Sunflower Syndrome, a rare epilepsy, bringing together 50 families, most of whom had never met anyone else affected by the syndrome.

Program Long-Term Success 

Our new middle school curriculum is rolling out this fall alongside our Kids Connect programming for grades 5-8, launching in each state.

Thanks to a grant from Epilepsy Foundation of America, we are working to reach underserved communities in urban centers in Western MA, Boston, and Providence, including outreach to Faith Based Organizations with predominantly Spanish-speaking and African American congregations.

Program Success Monitored By  --
Examples of Program Success  At the Burlington, MA public schools, 29 school personnel were trained on the basic facts about epilepsy and how to respond to a person having a seizure. At the Greene School in Rhode Island, 20 high school students learned about tolerance and understanding of people with epilepsy.

Epilepsy Resource and Support Center

“Help” is at the core of EFNE. A 2016-2017 evaluation and rethinking of our resources and supports led to a relaunch of the Resource and Support Center in 2017. The new center provides live help desk services alongside a comprehensive library of online tools and resources to educate and support individuals, families, and caregivers.We help about 2,000 people per year through the Center.
Budget  $107,996.00
Category  Human Services, General/Other
Population Served General/Unspecified Elderly and/or Disabled Families
Program Short-Term Success  A listening ear and advice by phone, online Knowledge Center, 40+ online and in-person SHARE groups a year, connecting families to resources, scholarships - Epilepsy Foundation NE helps thousands of people. Over the past 12 months, we assisted 38 families with $50-$1,000 one-time emergency aid gifts when epilepsy caused dire financial stress.
Program Long-Term Success  We will continue to try and meet the needs of as many individuals and families as we can, within the restraints of our budget.
Program Success Monitored By  --
Examples of Program Success  For example, we helped Annie, age 29, who became significantly physically disabled following status epilepticus requiring a 2-month medically induced coma. Annie's Occupational Therapist contacted us to request help with medical supplies after she was discharged from short-term rehab because her insurance ran out. Annie was sent home to live with her bedridden mother who suffers from MS, without much needed supplies, which are not covered by her insurance. We were able to provide the medical equipment (e.g., bed rail) she needed and have it shipped to her house.

The Purple Camp

The camps provide a traditional, yet safe and medically supervised, camping experience for nearly children and their families living with epilepsy in Massachusetts, Rhode Island, New Hampshire, and Maine. Children from other states are also welcome to attend. Campers’ seizure control varies. Some children experience a small number of seizures over an extended period. Other children experience frequent or daily seizures.

For many children, their epilepsy has prevented them from attending any other summer camp. One of the difficulties that children with epilepsy face is not being allowed to participate in the activities of their peers. Frequently, recreational camps do not have the physician and nursing coverage necessary to permit children with frequent seizures to attend. Unlike many other camps, acceptance to Purple Camp is generally free of restrictions due to seizure control and/or functioning level.

For many of our campers, the Purple Camp is their first experience away from home and family. Indirect populations who benefit from our camp include families who have a brief respite from the on-going responsibilities of caring for a child with a chronic disability and the many adults with epilepsy who serve as volunteer counselors and role models for our campers.

Budget  $155,559.00
Category  Recreation & Sports, General/Other
Population Served Children and Youth (0 - 19 years)
Program Short-Term Success 

The Purple Camps provide both traditional camping experiences (e.g. swimming, paddle boats, a rock climbing wall, arts and crafts, team building sports, and other activities) and unique epilepsy specific features:

  • Unique focus: The Purple Camp is the only camp in New England specifically for children with epilepsy
  • Specialized staff training: In addition to first aid and CPR training, staff is trained in issues specific to the needs of the children with epilepsy including their medical needs, social needs, and the treatment of epilepsy and seizures
  • Role models with and without epilepsy: A major staff component is comprised of adults with epilepsy who interact with campers as positive role models with the remaining staff provided by our host camp organizations
  • Twenty-four hour specialized health care staffing: Medical coverage is provided by local neurologists and nurses with an expertise in epilepsy. Social workers and other professional staff supplement this team
  • Epilepsy Education: An epilepsy education component is integrated into the camp program. Epilepsy education increases a child’s ability to cope with their disorder, achieve a better understanding of their epilepsy, participate in their own seizure management, and connect with children like themselves
  • Broad Support from Community Partners: This camp demonstrates the benefits of collaboration, combining the unique resources and talents of community organizations, in this case, hospitals and health care providers across New England, the West Suburban YMCA, Greenlock Therapeutic Riding Center, and Oceanwood Camp and Conference Center
Program Long-Term Success 

The primary goals of the camps are to aid children in better managing their condition, supporting personal development, and promoting fun:

· Increasing self-confidence: Campers develop friendships, learn new skills and participate in group activities

· Increasing independence: Campers make choices, learn from friends, and have time away from home

· Increasing self-esteem: Campers learn that everyone has different interests and abilities and that diversity can be beneficial

· Increasing self-awareness: Campers share common experiences and concerns in a camp environment. Children have a greater opportunity to concentrate on being individuals when they are at camp, than when they are at school

· Increasing self-management of seizure disorders: Campers learn about epilepsy self-management and can begin to apply what they learn

· Increasing feelings of being understood: At Purple Camp, a child with epilepsy is more likely to feel free to share their thoughts and feelings about living with epilepsy, knowing they will be understood

We are confident that Purple Camp enables children to feel better about living with their disorder. We predict the experience of the epilepsy camp will significantly improve the children’s attitude towards epilepsy. Furthermore, we know from past campers’ experience that these changes will not just persist for a month after leaving camp but also for an entire year.

Program Success Monitored By  --
Examples of Program Success 

In a recent evaluation of The Purple Camp, % of campers who were reported to:

Have fun and enjoy him/herself 100%

Try new things & succeed at taking challenges 100%

Have a better sense of self and his/her abilities 100%

Show respect for self, others, & community 100%

Build healthy relationships & demonstrate empathy 100%

Be more confident in ability to work through health challenges 100%

Contribute to family, school, or community 100%


CEO/Executive Director/Board Comments

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Management


CEO/Executive Director Ms. Susan Linn
CEO Term Start July 2016
CEO Email slinn@epilepsynewengland.org
CEO Experience --
Co-CEO --
Co-CEO Term Start --
Co-CEO Email --
Co-CEO Experience --

Former CEOs and Terms

Name Start End
-- -- --

Senior Staff

Name Title Experience/Biography
-- -- --

Awards

Award Awarding Organization Year
-- -- --

Affiliations

Affiliation Year
-- --
Member of state association of nonprofits? Yes
Name of state association Massachusetts Nonprofit Network

External Assessments and Accreditations

External Assessment or Accreditation Year
-- --

Collaborations

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CEO/Executive Director/Board Comments

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Foundation Comments

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Staff Information

Number of Full Time Staff 8
Number of Part Time Staff 6
Number of Volunteers 400
Number of Contract Staff 0
Staff Retention Rate % --

Staff Demographics

Ethnicity African American/Black: 0
Asian American/Pacific Islander: 0
Caucasian: 14
Hispanic/Latino: 0
Native American/American Indian: 0
Other: 0
Other (if specified): --
Gender Female: 11
Male: 3
Not Specified 0

Plans & Policies

Organization has Fundraising Plan? Yes
Organization has Strategic Plan? Yes
Years Strategic Plan Considers 2
Management Succession Plan --
Business Continuity of Operations Plan --
Organization Policies And Procedures Yes
Nondiscrimination Policy Yes
Whistle Blower Policy Yes
Document Destruction Policy --
Directors and Officers Insurance Policy --
State Charitable Solicitations Permit --
State Registration --

Risk Management Provisions

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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

Governance


Board Chair Mr. Edward Bunn
Board Chair Company Affiliation Atlantic Trust
Board Chair Term July 2018 - June 2020
Board Co-Chair --
Board Co-Chair Company Affiliation --
Board Co-Chair Term -

Board Members

Name Company Affiliations Status
James Boudrot NAI Hunneman --
Jason Bourqe Creative Wealth Solutions and Insurance Services --
Edward Bunn Atlantic Trust --
Jaimee Chace Living for Kimberly Foundation --
Christine Chasse Management Research Group --
Andrew Cole MD Massachusetts General Hospital --
Nicole Desrosiers WCVB Channel 5 Boston --
Don Holmes PWC --
Audrey Kadis None --
Susan Kantor None --
Susan Linn Epilepsy Foundation New England --
Catherine McCarty Goodwin --
Richard McIlveen Iron Mountain --
Kiran Reddy MD Massachusetts General Hospital --
Francesco Salituro Sage Therapeutics --
Samantha Schmidt Dartmouth Hitchcock Medical Center --
Kimberlee Schumacher Jewish Big Brothers Big Sisters of Greater Boston --
Joseph Siravo Deloitte and Touche LLP --
Steve Siravo PWC --
Telly Theodoropoulos State Street Bank and Trust Company --
Steve Valliere Sunovion --
Alison Zetterquist None --

Constituent Board Members

Name Company Affiliations Status
-- -- --

Youth Board Members

Name Company Affiliations Status
-- -- --

Advisory Board Members

Name Company Affiliations Status
-- -- --

Board Demographics

Ethnicity African American/Black: 1
Asian American/Pacific Islander: 0
Caucasian: 21
Hispanic/Latino: 0
Native American/American Indian: 0
Other: 0
Other (if specified): --
Gender Female: 10
Male: 12
Not Specified 0

Board Information

Board Term Lengths --
Board Term Limits --
Board Meeting Attendance % --
Written Board Selection Criteria Yes
Written Conflict Of Interest Policy Yes
Percentage of Monetary Contributions 100%
Percentage of In-Kind Contributions --
Constituency Includes Client Representation Yes

Standing Committees

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CEO/Executive Director/Board Comments

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Foundation Comments

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Financials


Revenue vs. Expense ($000s)

Expense Breakdown 2017 (%)

Expense Breakdown 2016 (%)

Expense Breakdown 2015 (%)

Fiscal Year July 01, 2018 to June 30, 2019
Projected Income $1,686,250.00
Projected Expense $1,685,966.00
Form 990s

2017 990

2016 990

2015 990

Audit Documents

2017 Audit

2016 Audit

2015 Audit

IRS Letter of Exemption

IRS Letter of Determination

Prior Three Years Total Revenue and Expense Totals

Fiscal Year 2017 2016 2015
Total Revenue $7,397,128 $5,960,513 $4,338,633
Total Expenses $6,457,954 $5,262,323 $3,740,732

Prior Three Years Revenue Sources

Fiscal Year 2017 2016 2015
Foundation and
Corporation Contributions
-- -- --
Government Contributions $0 $0 $0
    Federal -- -- --
    State -- -- --
    Local -- -- --
    Unspecified -- $0 $0
Individual Contributions $1,921,227 $1,198,566 $939,312
Indirect Public Support -- $0 $0
Earned Revenue $5,124,171 $4,467,386 $3,119,539
Investment Income, Net of Losses $14,522 $11,971 $16,316
Membership Dues -- $0 $0
Special Events $311,236 $278,430 $253,596
Revenue In-Kind -- -- --
Other $25,972 $4,160 $9,870

Prior Three Years Expense Allocations

Fiscal Year 2017 2016 2015
Program Expense $4,500,340 $4,700,072 $3,599,136
Administration Expense $325,893 $322,187 $70,083
Fundraising Expense $1,631,722 $240,064 $71,513
Payments to Affiliates -- -- --
Total Revenue/Total Expenses 1.15 1.13 1.16
Program Expense/Total Expenses 70% 89% 96%
Fundraising Expense/Contributed Revenue 73% 16% 6%

Prior Three Years Assets and Liabilities

Fiscal Year 2017 2016 2015
Total Assets $4,366,391 $3,402,383 $2,443,198
Current Assets $1,707,731 $2,952,074 $2,023,702
Long-Term Liabilities $0 $0 $0
Current Liabilities $400,696 $401,086 $151,298
Total Net Assets $3,965,695 $3,001,297 $2,291,900

Prior Three Years Top Three Funding Sources

Fiscal Year 2017 2016 2015
1st (Source and Amount) -- --
-- --
-- --
2nd (Source and Amount) -- --
-- --
-- --
3rd (Source and Amount) -- --
-- --
-- --

Financial Planning

Endowment Value --
Spending Policy --
Percentage(If selected) --
Credit Line Yes
Reserve Fund No
How many months does reserve cover? --

Capital Campaign

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? --

Short Term Solvency

Fiscal Year 2017 2016 2015
Current Ratio: Current Assets/Current Liabilities 4.26 7.36 13.38

Long Term Solvency

Fiscal Year 2017 2016 2015
Long-term Liabilities/Total Assets 0% 0% 0%

CEO/Executive Director/Board Comments

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Foundation Comments

Financial summary data in the charts and graphs above is per the organization's IRS Form 990s. Contributions from foundations and corporations are listed under individuals when the breakout was not available.

Documents


Other Documents

No Other Documents currently available.

Impact

The Impact tab is a section on the Giving Common added in October 2013; as such the majority of nonprofits have not yet had the chance to complete this voluntary section. The purpose of the Impact section is to ask five deceptively simple questions that require reflection and promote communication about what really matters – results. The goal is to encourage strategic thinking about how a nonprofit will achieve its goals. The following Impact questions are being completed by nonprofits slowly, thoughtfully and at the right time for their respective organizations to ensure the most accurate information possible.


1. What is your organization aiming to accomplish?

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2. What are your strategies for making this happen?

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3. What are your organization’s capabilities for doing this?

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4. How will your organization know if you are making progress?

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5. What have and haven’t you accomplished so far?

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