I need some input

[DAVE1967]

if the efa says they help towards searching for a cure for epilepsy howcome they target the people who have epilepsy for the cash, when they know the people that have siezures don't have the cash to help towards the cure? I just don't see the logic in thier thinking there. They best get thier acts together & not hit people with epilepsy for the cash when they can't even afford to live on thier own at times.(atleast i'm one that can't live on my own due to my siezures & yet the efa still hits me for cash no sense there.) they best get thier heads cleared & not target the ones who have epilepsy for cash but yet ask others who don't have it. How they can tell is the ones not signed up with the efa for newsletters or postal mail aren't ones who are on meds for it. I'm just not one who cares to get email from the efa alot so i'm not signed up.

[hawke86]

David quit complaining and do something about it.

[Heather]

I've never been hit up for money by efa. I posted on those forums and got newletters emailed to me for about 5 yrs. So I don't really know how to answer that. I know they have "walk for epilepsy" and other fundraisers. I don't know about being hit up for money though.

I know I don't like their new forums now. That's part of the reason I started posting here.

[alivenwell]

Change your email address. They can continue to send it to your old email address, but you'll not be reading it.

[Bernard]

if the efa says they help towards searching for a cure for epilepsy howcome they target the people who have epilepsy for the cash ...

Like all large non-profits (including foundations for diabetes, cancer, etc.), they target anyone who contacts them. If they get your mailing address, you will get solicitations for donations. It's the nature of all the non-profit beasts.

If it makes you feel any better, they also solicit funds from corporations (including big pharma) and governments. They had a budget of around $ 79.7 million in 2006 (.PDF).

The folks in New Zealand recently split off their association with the EF because of the way the economics were working out:

After many years of co-operation, the Epilepsy Association of New Zealand Inc (Epilepsy New Zealand) has severed it’s ties with the Epilepsy Foundation.

Epilepsy New Zealand’s Board met in December 2008 and passed a resolution to disestablish the relationship.

The Board’s concern was that donors were given the impression by the Epilepsy Foundation that donations were being retained in the donor’s local area and supporting the Association. Donors believed they were helping local Epilepsy New Zealand Branches and the local community, which was not the case.

In fact over the last three years the Epilepsy Foundation has received donations of $2.82 million, and was paying approximately 75% of donations to the telemarketer, whilst approximately 22.5% went to the Foundation for managing its office in Hamilton, and only approximately 2.5% (i.e. two and a half cents in every dollar) was going to the local Epilepsy New Zealand Branch to enable it to assist people with epilepsy.

Eplilepsy Foundation Relationship Ceases

[RobinN]

Thank you for posting that Bernard. It is a great eye opener as to what goes on behind the scenes. It is so important to research the organization that you want to give hard earned $$ to.

[brain]

This might paint a totally different picture here when you
see this entire view here below, the "Latest" information:



June 2008 Epilepsy Foundation of America's Report - full report and accountability - BBB

BBB For Consumers

BBB Wise Giving Report for
Epilepsy Foundation

BBB Wise Giving report issued January 2009.
BBB Wise Giving report expires January 2011.

This BBB Accredited charity meets all 20 Standards for Charity Accountability and is a Seal Holder. Find out more...


Find out more about this charity:

* Charity Contact Information
* BBB Wise Giving Alliance Comments
* Programs
* Notes

* Tax Status
* Governance
* Fund Raising
* Financial

Charity Contact Information
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Name:
Address:

Phone:
Web Address:
Epilepsy Foundation
8301 Professional Place
Landover, MD 20785-2238
301-459-3700
www.epilepsyfoundation.org
also known as: Epilepsy Foundation of America

BBB Wise Giving Alliance Comments
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Year, State Incorporated: 1967, Delaware

Affiliates: Epilepsy Research Foundation and 52 affiliates throughout the United States


Stated Purpose: "to ensure that people with seizures are able to participate in all life experiences; and will prevent, control and cure epilepsy through services, education, advocacy and research."

Evaluation Conclusions

Epilepsy Foundation (EF) meets the 20 Standards for Charity Accountability.




Programs

EF serves people with epilepsy and their families by funding research seeking improved treatments and a cure; by providing educational information designed to improve treatment and quality of life; by providing support services addressing issues such as employment, education and legal rights; by conducting awareness efforts aimed at eliminating the stigma associated with epilepsy; and by advocating on behalf of individuals with epilepsy at the federal, state and local level. EF provides information via its toll free lines and on its website.

For the fiscal year ended June 30, 2008, EF's program expenses were:


Community services 5,348,678
Research 3,635,432
Public health education 2,594,291
Patient services 1,131,187
Professional education and training 371,317
Total Program Expenses: $13,080,905



Governance

Chief Executive : Eric R. Hargis, President & Chief Executive Officer
Compensation*: $360,955

Chair of the Board: Steven T. Sabatini
Chair's Profession / Business Affiliation: Chief Financial Officer, banking industry

Board Size: 38

Paid Staff Size: 75


*July 1, 2007 - June 30, 2008 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.



Fund Raising

Method(s) Used:

Direct mail, telemarekting, special events, print advertisements, radio, grant proposals, Internet appeals, planned giving, cause-related marketing, and membership appeals.

Fund raising costs were 10% of related contributions. (Related contributions, which totaled $14,771,504, are donations received as a result of fund raising activities.)
EF incurred joint costs of $653,132 for informational materials and activities that included fund raising materials. Of those costs $351,016 was allocated to program expenses and $302,116 was allocated to fund raising expenses.



Tax Status

This organization is tax-exempt under section 501(c)(3) of the Internal Revenue Code. It is eligible to receive contributions deductible as charitable donations for federal income tax purposes.



Financial

The following information is based on EF's audited financial statements (combined with Epilepsy Research Foundation) for the fiscal year ended June 30, 2008.

Source of Funds
Contributions 9,149,979
Government grants 4,309,637
Special events (net) 1,311,888
Affiliate fees 547,827
Other 534,441
Sale of materials 122,472
Investment income -1,055,099
Total Income $14,921,145






Uses of Funds as a % of Total Expenses

Programs: 78% Fund Raising: 9% Administrative: 13%


Total income $14,921,145
Program expenses $13,080,905
Fund raising expenses 1,521,359
Administrative expenses 2,174,673


Total expenses $16,776,937

Expenses in Excess of Income (1,855,792)
Beginning net assets 25,364,922


Ending net assets 23,509,130
Total liabilities 5,543,682

Total assets $29,052,812





An organization may change its practices at any time without notice. A copy of this report has been shared with the organization prior to publication. It is not intended to recommend or deprecate, and is furnished solely to assist you in exercising your own judgment. If the report is about a charity and states the charity meets or does not meet the BBB Standards for Charity Accountability, it reflects the results of an evaluation of information and materials provided voluntarily by the charity. The name Better Business Bureau is a registered service mark of the Council of Better Business Bureaus, Inc.

This report is not to be used for fund raising or promotional purposes.

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[Bernard]

Whoa... Their budget went from almost $80MM down to ~$17MM in the span of two years.