There are many kinds of non-profit organizations. Sometimes we are asked about how The Mesh Warrior Foundation is classified specifically. It's a simple answer, though terminology can be confusing. According to Mollie Cullinane of the Cullinane Law Group,
"The terms of nonprofit entities can be so confusing … public charity … private foundation … private nonoperating foundations … private operating foundations … public charities that act as foundations. What are they, and how do you tell which is which?
The Internal Revenue Code distinguishes Section 501(c)(3) nonprofit organizations into various tax categories, including private foundations and public charities.
The term 'foundation' can be especially confusing, since a nonprofit organization can use the term in its name, even if it is not an official private foundation."
What is a Public Charity?
A public charity is a charitable organization that (a) has broad public support, (b) actively functions to support another public charity, or (c) is devoted exclusively to testing for public safety. Many public charities rely on contributions from the general public. Donations to public charities are fully tax deductible to the extent of the law.
The Mesh Warrior Foundation for the injured provides some of the above services, but not all. We are (c) "devoted (though not exclusively) to testing for public safety." This terminology is broad, as we do not perform "tests" per se, but we are vigilant in watching the scientific community and the manufacturers of mesh and their testing as it relates to our community of mesh-injured patients. We are ever-watchful to source Tier One Ethics* in research design and testing for public safety. We advocate and source sound science, with disclosures, to share with the mesh-injured community, specifically as it pertains to the marketing and use of medical devices, and more specifically polypropylene mesh. While we do not "rely on contributions from the general public," we do accept donations from the general public. Some examples of public charities are churches, universities, hospitals, and medical research groups.** (*Source: National Bioethics Advisory Council, Georgetown University; **www.irs.gov)
What is a Private Foundation?
A Private Foundation is a charitable organization that does not qualify as a public charity. Such foundations are usually nonprofits established with funds from a single source or specific sources, such as family money or money from other entities – instead of funding from the general public. This is the case for TMWF. We were established with family money, and our main sources of income are from entities, not individual persons. Click to view the TMWF SPONSORS | UNDERWRITERS | PARTNERS page. TMWF invests our funding for charitable purposes. We do not have endowments at this time.
According to Joanne Fritz, a nonprofit charitable organization expert, an endowment is:
"A fund that is made up of gifts and bequests that are subject to a requirement that the principal be maintained intact and invested to create a source of income for an organization. Donors may set up an endowment to fund a specific interest; and a nonprofit's governing body may set up an endowment. In any case, an endowment requires that the principal remain intact in perpetuity, or for a defined period of time, or until sufficient assets have been accumulated to achieve a designated purpose."
Sounds pretty great, but TMWF is just over a year old, and we're not quite there yet!
The IRS recognizes two types of private foundations: private nonoperating foundations and private operating foundations. The principal difference between a private nonoperating foundation and a private operating foundation is how each distributes its income:
- A private nonoperating foundation grants money to other charitable organizations. This is the more common type of private foundation. These foundations do not directly perform any charitable programs or services.
- A private operating foundation distributes funds to its own programs that exist for charitable purposes.
"Both types of private foundations are subject to restrictions and requirements. For example, they cannot do business with their major contributors; they are subject to excise taxes and can face penalties for self-dealing, making risky investments, and for failing to distribute adequate funds to charitable endeavors, among other regulations."
Why is the Word “Foundation” So Confusing?
"Not every organization that uses the word 'foundation' in its name is a private foundation, and the word 'foundation' has no legal meaning in and of itself," according to Mollie Cullinane, who also says, "To look further to discover an organization’s actual tax-category, review the organization’s IRS filings: public charities will file Form 990; private foundations file Form 990-PF."
We use our funds to create programs that exist for charitable purposes in support of our TMWF Mission to EDUCATE | ADVOCATE | and BUILD COMMUNITY for the mesh injured and their families.
As a private operating foundation, the IRS allows us to back-date tax-deductible donations to our date of incorporation (March 11, 2014). Our donors have until June 11, 2016 to file their tax deductions, upon our receipt of 501(c)(3) status, well before that date.
". . . only from the date it files its application, rather than the date that it was created or first became described in section 501(c)(3). The organization may obtain retroactive exemption, however, if it establishes that it qualifies for relief from the 27-month deadline."
Below are some of our programs that exist for charitable purposes in support of our mission:
- Education through published writings - We write for patient advocacy outlets including WeGo Health, Mesh News Desk, other charities, media outlets, and as a guest blogger for other entities.
"Color for a Cause" - We attend patient advocacy events, wearing turquoise blue, sometimes even on our lips, to create awareness and spark conversation so that we may educate others face-to-face when they ask, "Why are you wearing blue lipstick?!" We have also created mesh-injury awareness items sold online via our Yes M.A.M.Market. We sell these items to generate awareness and get people asking questions about mesh-related injury. 100% of the proceeds from the sale of these items go to the foundation.
- We chose the turquoise shade of blue because manufacturers used this color to market to doctors, when it was discovered that the clear mesh was eroding, causing pain, causing fistulas, roping and fraying. The manufacturers used a change of color to assure physicians that this "improved" mesh, blue in color, would be easier to place properly because its color could more easily be differentiated from human tissue. The manufacturers' theorized that coloring the mesh would make it easier to see upon placement, and it did. It also made it harder for physicians and manufactures alike to deny the mesh was eroding through organs; was becoming dislodged from its original placement; and that it was breaking off and migrating to other parts of the body. (Source: Batiste vs. Ethicon, 2014)
- Public Speaking - Our founder speaks to organizations who may benefit from our collective expertise. These organizations include women's groups, church groups, assisted living communities, other nonprofit entities, private gatherings, in short, any organization that believes their community will benefit from our growing knowledge base and resources.
Trial Attendance – We attend the trials of injured patients to advocate for them during a very delicate and difficult part of their journey with mesh. In our experience, patients have received our support in this way as a great encouragement and as a representation of the community at-large. We write about trials in an effort to educate mesh-injured women who may have an upcoming trial or who may simply benefit from knowing the details and inner-workings of the trial process. At each trial we’ve attended, we’ve had mesh-injured women and men who want to attend with us to show their support for the plaintiff. In this way, we find trial attendance advocates for the plaintiff standing trial and for the injured community as well. In the absence of media coverage, our attendance at trials and our subsequent writing also provides a greater understanding to the community as to how defective mesh products made it to the marketplace with no testing and very little oversight.
- Media Outreach - Many of you know that the mainstream media has not reported on the details of mesh injury. For reasons unknown to us, polypropylene mesh injury and the havoc it wreaks on millions of people has not been of particular importance to the media. TMWF often contacts mainstream media to educate them and ask them to "cover the issue" so that our voices are amplified and so that we may be of service to those individuals outside our core community who do not know of the dangers of mesh. In seeking out appropriate media (health, business, and trade reporters), we are able to educate the public at no cost to the foundation, other than the time spent contacting media, following up with media and providing interviews and facts for their stories. See or media outreach efforts and accomplishments here: IN THE NEWS.
- Conference Attendance - Because of the generosity of our donors, we have attended and will continue to attend Stanford Medicine X, our country's preeminent medical conference for patient advocacy. At Med X, we are able to join forces with other outstanding individual patient advocates and other patient advocacy organizations, including those that are for-profit and those which are nonprofit entities. As patient advocates, we share many of the same goals, and our voices are louder together. We learn from one another, and the conference gives us one-to-one access with doctors who have a heart to listen and change their relationships with patients, once they truly understand the healthcare system from the patient's point of view.
- Blogging and Social Media - The internet is a powerful tool when it comes to patient advocacy. So many individual patient advocates are doing great work in their spheres of influence. As a part of the active health-blogging community, we are able to write stories that educate and advocate for the mesh injured to those outside our core community, so that others understand the MESH MESS and how it happened. We write educational blogs for WeGo Health, a community of almost 19,000 active patient advocates and bloggers with an online presence and we participate and contribute to the Stanford Medicine X Online Community. The resources of social media enable us to communicate about current events, write research-oriented, patient profiles, and blogs simply for encouragement. We belong to a large community of internet health writers, and our relationships with them help to further the message and mission of TMWF. Our social media presence (via Twitter, Facebook, Google +, Tumbler, Instagram, Pinterest and through the TMWF Blog) helps us connect with other like-minded patient advocates and patient advocacy organizations whose goals are in line with those of TMWF.
Partnerships and Alliances - When we combine forces with others' advocacy efforts the message of both organizations are amplified and reach others. Some examples of our alliances are:
- Rachel Brummert, executive director of The Quinolone Vigilance Foundation whose MISSION is "to understand and reduce Quinolone Toxicity as a cause of human suffering in the world." (SOURCE: www.saferpills.org). Rachel and her team work to warn other about harmful antibiotics in the quinolone and fluoroquinolone class of antibiotics (Cipro, Levaquin, etc.). Our alliance with QVF allows us to educate their community about the harms of mesh, while they are able to educate our community about the dangers of certain antibiotics, which are used often for mesh-related infection.
- The Lown Institute - This nonprofit organization's mission is "Do as much as possible FOR the patient and as little as possible TO the patient." Click to read the Lown Institute Brochure. The organization addresses over treatment of patients by the healthcare industry, which is of special significance to the mesh-injured community, as many patients received this faulty medical device when another procedure, with much less risk, could have been performed, or in some cases; no procedure at all was necessary.
BUILDING COMMUNITYWe refer to our community at-large as our "Family of Chance." None of us would wish the life-changing, profound and devastating complications of mesh injury on ourselves, our loved ones, or any human being, but mesh injury has brought us together nonetheless.
Our goal in building community through TMWF has always been to create and foster face-to-face, lasting friendships rather than Facebook-to-Facebook online "friends."
Still, we understand that Facebook and other online platforms are a stepping stone to connecting injured persons who would like to have real-world friendships and support by others in this "Family of Chance." TMWF has experimented with a number of ways to build community, and we haven't quite found THE answer, but we continue to seek the best ways to connect mesh-injured people with others who are experiencing the same complications - similar issues with the healthcare community and doctors; similar symptoms; similar family dynamics; and great similarities in the loss of quality of life. We want those in our community to know "You are not alone."
- The Mesh Warrior Facebook Page - Our founder, Aaron Leigh Horton/The Mesh Warrior, maintains a public Facebook page for a very specific purpose. The population that uses Facebook is overwhelmingly comprised of women, specifically, and of both sexes - ages 30 and older. Virtually free, Facebook is unmistakably, an incredible online resource for reaching the injured and those who have not been injured yet or those who have an injured family member. Though we maintain a public Facebook page in support of TMWF, we no longer host a “closed, private or secret” page on Facebook, as we found that this method did not serving our mission well – to build community.
- TMW Foundation's Page (www.tmwfoundation.org) - Once we became aware of the limitations of Facebook, we sought out another platform for connecting the mesh-injured community. The TMWF website is built using a platform called NationBuilder, a software platform created for non-profits, by two-time cancer survivor and programmer, Jim Gilliam. View Jim's TED Talk to learn more about his story and inspiration for creating the NationBuilder software. He was seeking a way to provide non-profits with an affordable alternative to developing a website from scratch. He wanted those non-profit communities to have a way to connect to one another, around a common health condition or other issue. The TMWF website has been useful to connect our community in many ways, and we are grateful for Jim's vision, but because many members of our "Family of Chance" have a pending legal settlement or are involved in a legal proceeding or cause of action, we have found that the public nature of the forum has been a source of fear and confusion for some users in our community. Some feel it exposes them to possible harm, either by inadvertently being a resource for defense attorneys to mine, or by the way the NationBuilder platform's personal profile "Go-Fund-Me" type fundraiser function works. Unfortunately, NationBuilder does not have the ability to remove just the personal funding function/page, though each member can choose to make this part of his/her profile "private" by simply checking the box, "I do/do not want this page displayed on my public profile." With regards to the personal funding page, NationBuilder is a binary system. Either the community function (including the personal fundraiser page) is ON or it's OFF - globally, for each individual user, site-wide. So, for now, TMWF has turned the community function OFF, as we work with NationBuilder and/or search for another (more private) way to connect to one another.
- Voice-to-Voice and Face-to-Face - Our founder and board members have spoken with hundreds and hundreds, likely thousands of women and men by now, who need support, education, advocacy and community. Our founder makes her personal phone number public (214 [dash] 415 [dash] 0415) because our organization is committed to providing words of encouragement or pointing an injured person or family member towards resources and others who can help. The TMWF board members do the same. As a result, our board members have built friendships with many injured men and women, and we am thankful for their friendships and for their courage. Some have been willing to share their stories, so that others may understand the catastrophic injuries that mesh implant can cause. For those who participate in our "Family of Chance" and have shared their stories with the public, we are most grateful. It should be noted that we obtain WRITTEN AUTHORIZATION from each person who wishes to share his or her story via "The Mesh Warrior" Blog or via the TMWF website under Patient Profiles: THE FACES OF MESH. Stories are NEVER posted without written without consent, which we keep on file. Stories are written in partnership with injured patients, with the hope that others will be educated and warned because of another's courage to share their journey and experience with mesh. We also provide a SHARE YOUR STORY OPEN-SOURCED BLOG, for those who wish to share their stories via our site.
TMWF is a private operating foundation with a simple mission:
To Educate, Advocate and Build Community for the mesh-injured and their families.
WHAT WE ARE NOT: TMWF is not a 501(c)(3) organization YET, but that doesn't mean there are not laws and rules that govern our operation. There certainly are. Becoming a 501(c)(3) is a big step and, to do it the right way, takes careful evaluation of what we hope to accomplish through the foundation now and in the future. It's also not cheap, no matter what anyone says. The fee for filing is a sliding scale, based on an entity's projected operating budget and income. It is not a flat fee. Further, to prepare the documentation correctly and as to-the-letter-of-the-law as is humanly-possible, it is best to employ the help of a professional, which also costs money.
TMWF does have the intention of becoming a 501(c)(3) nonprofit entity, but we will do so in the proper time with the proper resources. See below for documentation of the legal operation of TMWF as a PRIVATE OPERATING FOUNDATION.
3/11/2014 - Texas Secretary of State issued Texas 202 Form (Officers noted here were officers when the non-profit entity was formed. Some officers have changed.) See current officers and board here: TMWF-WHO WE ARE.
4/7/2014 - IRS EIN (Employer Identification Number) Issuance - Whether for profit or not-for-profit, the IRS REQUIRES and automatically issues every entity making financial transactions an EIN to track taxes, including employment taxes, that must be paid by the organization.
*Note that under the Pension Protection Act of 2006, "Small nonprofits should file the Form 990-N if they had been exempt from filing the Form 990 because their annual gross receipts were $25,000 or less (the thresh hold has been since raised to $50,000). *SOURCE: Nonprofit Coordinating Committee of New York
IRS: Private Foundations