Follow the Money: Where is your donation to a Food Allergy Non-Profit going?

I have been a member and/or officer of several food allergy related non-profit groups for almost 20 years. I have the hope that when I send an organization my hard-earned money, they will be good stewards of my donation.

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My review of four food allergy organizations showed me that salaries and operational expenses take up a large part of the revenue stream of many food allergy non-profit groups. As a percentage of income, only one organization is giving away large amounts of money toward research – in fact it’s 64% of their revenue! Read on for what may change the way you contribute to food allergy organizations.

First a disclaimer – I am not a Certified Public Accountant. I majored in Finance, and have a Bachelor of Business Administration from The George Washington University. I continue to work in the field of finance providing financial management to several businesses, in addition to my work with AllergicChild.com.

The 990 is just one avenue to glean information about a non-profit. Utilizing Guidestar.org and Charity Navigator can provide additional information in your search for the best organization to donate money, in addition to annual reports of the organization and information from their website.

I reviewed the 2013 and 2014 Form 990’s  – the form required for a Non-Profit organization to file with the IRS – for FARE (Food Allergy Research & Education), APFED (American Partnership for Eosinophilic Disorders), KWFA (Kids with Food Allergies Foundation) and AAFA (Asthma and Allergy Foundation of America Inc). FAACT (Food Allergy & Anaphylaxis Connection Team) wasn’t yet in existence in 2013, and therefore didn’t have to file paperwork, however they did file in 2014. KWFA was merged into AAFA on July 22, 2013, however both organizations did file 990’s in that year; and the combination of the two organizations didn’t significantly change the percentages that I will report on.

FARE – Food Allergy Research & Education

FARE’s mission, as stated on their website, is to improve the quality of life and the health of individuals with food allergies, and to provide them hope through the promise of new treatments.

FARE is the largest food allergy non-profit organization with $15.5 million in total revenue in 2013. They spent 35% of this, or $5.5 million on salaries and employee benefits. Then CEO, John Lehr, received a total of $341,968 in salary and other benefits. There were 8 other key employees listed with salaries above $100,000; and a total of 72 people employed in calendar year 2013. They gave $2.1 million (or 13% of income) in grants. The largest single grant was for $825,423 to Mt Sinai School of Medicine for “Food Allergy Programs”. The only grant listed for “Research” was $122,070 to Stanford University School of Medicine. FARE was the only organization with investments or other securities listed on their 990. They listed 2,982,570 shares in “ARC” which is Allergen Research Corporation, which develops desensitization treatments for food allergies. These shares have a book value of $2.4 million. Charity Navigator gives FARE four stars overall, but only 3 stars for “financial”.

FARE’s 2014 Form 990 was just released showing a decrease of annual income to a little under $13 million. They spent 47% of their income, or a little over $6 million, on salaries and other benefits of their employees. James Baker Jr. was the CEO from 8/1/14, and made $208,151 for 5 months until the end of 2014. There were an additional 9 employees receiving salaries above $100,000 for 2014, and a total of 81 employees during the year. There is no mention of the shares of ARC on the 2014 990 except that “Investments-other securities” now show a value of $150,505.

In 2014, FARE gave only $1.4 million away in grants: a paltry 10% of their gross income. “Research” was indicated in over $1 million of the grants. Charity Navigator has not updated their rating for the year end 2014.

AAFA – Asthma and Allergy Foundation of America

AAFA’s mission, as stated on their website, is dedicated to improving the quality of life for people with asthma and allergic diseases through education, advocacy and research.

AAFA was the next largest organization with $3.7 million in revenue in 2013. They spent $1.6 million (43%) in salaries in 2013. William McLin, President and CEO, made $274,251 in salary and other benefits. They had 2 other key employees with a salary over $100,000, and a total of 17 employees. They gave $161,500 (4%) in grants. The largest grant was $60,000. This same amount went toward “Biomedical research” to both Massachusetts General Hospital and to the University of Iowa.  I will include KWFA here because of the merger with AAFA. KWFA had $229,566 in revenue with $102,372 (44%) going toward salaries.  In 2013, there were no employees listed. Charity Navigator gives AAFA 4 stars overall.

In 2014, AAFA made $3.5 million and spent $1.9 million (54%) on salaries. Cary Sennett is the new CEO as of June 2014, and made $149,303 for that partial year. There are now 3 other key employees with a salary over $100,000, and a total of 26 employees. They gave $100,000 (2%) in the form of 3 separate grants – all for “Biomedical research.”

APFED – American Partnership for Eosinophilic Disorders

APFED’s mission, as stated on their website: To passionately embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases through education and awareness, research, support, and advocacy.

APFED was by far the best steward of its funds in 2013. With $638,083 of total revenue; they spent only $56,549 (or 8%) on salaries. Additionally, they gave away $311,990 (48%!) in cash grants. Their largest single grant was for $100,000 to Children’s Hospital of Philadelphia for research. They listed 5 employees for 2013. APFED is not rated by Charity Navigator.

In 2014, APFED made $451,942 in total revenue; spent $93,393 (20%) on salaries, had a total of 4 employees, and gave away $290,000 (64%!!) on grants; the largest of which was for $70,000 to ARTrust. Once again, APFED was the best steward of funds in 2014.

FAACT – Food Allergy & Anaphylaxis Connection Team

FAACT’s mission, as stated on their website, is to educate, advocate, and raise awareness for all individuals and families affected by food allergies and life-threatening anaphylaxis.

FAACT filed a 990  in 2014 and their total revenue was almost $136,000. They paid $10,637 in salaries, or 7%. There were no grants listed.

Summary: For the almost 17 million dollars given to these organizations in 2014, there is a little less than $1.8 million given in grants – and some of this is going toward educational grants and not toward research. The question becomes – do you believe in the mission of the organization? The vast amount of money is clearly NOT going toward research for a cure? Are you being helped by the conferences the organization provides; the educational webinars; and the lobbying efforts? Then send in a donation! However, if you thought your monetary donation was primarily going toward finding a cure for food allergies, I’d suggest finding somewhere else to donate!