What You Can Do Today to Stop Misophonia Suffering

Since writing a post about how we could benefit from having a patient advocacy non-profit with integrity (and, by that, I mean one that is run by misophonia patients and/or their families), a number of questions have come up in connection with that endeavor.

To get some answers, I turned to Amanda LeFew, a rare disorder non-profit elder. Ms. LeFew is one of the original co-founders of The FPIES Foundation, a patient advocacy non-profit launched essentially by a small group of women who had children with another rare disorder which revolves around triggers that can wreak physical and emotional havoc. TFF was incorporated in 2011 but did not receive its non-profit status until the first part of 2013. Less than a year later, the organization was honored with a Top-Rated Nonprofit award from Greatnonprofits.org, a distinction given to less than 10% of eligible foundations. TFF is going to be an active participant in Rare Disease Day USA, which is part of a February 28th international awareness-raising event designed to give patient populations like ours an opportunity for creative expression and networking with government and local community leaders who may be willing to help advance our cause.

Here are excerpts from part one of two-part post covering my interview with Ms. LeFew:

Several of my readers have expressed an interest in getting a misophonia non-profit up and running, but are daunted by the prospect. What advice can you give them?

We were able to set up the initial business structure of The FPIES Foundation over the course of several months prior to our launch, though it was the product of a couple of years of discussion, brainstorming and community collaboration, as we began building resources. Turning to the community affected by the condition itself can often be a great way to locate resources. This community may present you with opportunities to work with lawyers, accountants, marketers, or other professionals that are not only well-versed in their fields, but also very invested in your cause, as they themselves (or their family members) are personally impacted. We were fortunate enough to have skilled volunteers to help us get off the ground, such as a lawyer from our community, who has experience in non-profit law and a web designer from our community, who designed our original website. Both of these professionals are also dads of children affected by FPIES and really helped FPIES Foundation to have solid beginnings. There are definitely ways to set up a non-profit without excessive financial resources but the process does certainly require a significant time commitment—especially if members of the new organization are determined to do all of the set up themselves (whether to save money or for other reasons).

Given the current economic climate, how do you obtain funding for your non-profit?

Our funding comes from a variety of sources. Though we welcome family fundraisers and offer resources for families wishing to undertake them, we do not directly request them of our community, as many families affected by FPIES often encounter significant financial burdens; we are strongly opposed to increasing their burdens! With our 501c3 distinction, there are actually several no-cost fundraisers in which we can participate, such as igive, goodsearch, project green, amazonsmile, and others. These services provide our organization with a specific percentage or amount based on an individual's online purchases (igive), submission of recyclable items (project green), or an individual's online searches (goodsearch), at no cost whatsoever to the individual. We also utilize fundraisers organized by The Foundation itself, such as partnering with various businesses for ongoing fundraisers. We do not engage in fundraisers that require us to spend any of our income on the fundraising process itself, so as to maximize the funding potential for each fundraiser.

The economic climate is certainly tricky for non-profits, particularly ones supporting individuals affected by a condition very few people have even heard of, like FPIES. Transparency, creativity, perseverance and keeping it personal are the keys we have found instrumental to helping us to raise enough funds to be operational and to bring about consistent program growth

How is the money you raise allocated, and how transparent is that process?

None of the volunteers, medical advisory board members or board of directors members at The FPIES Foundation receive any kind of compensation, monetary or otherwise.

We operate within a set mission and list of goals for current and upcoming programs—within our mission. We have decided to devote our funding to programs emphasizing educational, outreach/advocacy and research objectives. Transparency is necessary in order to have better informed supporters. When an individual knows what they are financially investing in, we believe that it is much easier for that individual to feel a personal connection, because they feel they can trust the organization. It is this trust that allows us to receive continued funding from our supporters. Any donor is welcome to request information about our financial records and we do keep very detailed records for this reason. In fact, in our annual report (soon to be published on our website) we provide a basic overview for all supporters regarding the percentage of our income dedicated to specific programs and regarding the sources of our income (what percent comes from which source).

Up Next Week: The discussion with Ms. LeFew continues with advice on how to contribute to our cause outside of the non-profit world, advocate for scientific research and sniff out snake oil salesman.