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Project Types

Raising awareness:


  • online management
  • search engine donations
  • "Casual Clothes for a Cause" - Organization members can set up a monthly day in the workplace when employees can donate $5 to wear jeans to work. These donations can rotate through a number of organizations to which the various employees have ties.

How to Engage Your Members

Encouraging members to organize fundraisers both helps financially and allows them to have some "ownership" of the group.

Because you value your name and reputation of your organization, you may choose to create an agreement with individuals who do fundraising on behalf of your organization. After having a conversation with the individuals to assess their motivation, how well organized they are, etc., The Association for Frontotemporal Dementias uses this form. PAGER's fundraising manual can also be accessed here.

In one instance, an organization wanted to know 'How do we draft a policy that allows for corporate "matching dollar" donations (to what a specific family has raised) be made to the Foundation and still allows families to "withdraw" their original fundraising dollars for their conference related expenses?

One idea is to secure corporate donations and offer scholarships to families. The idea of giving to ‘credit’ dollars to attend a conference might make securing sponsorship a bit difficult. From an accounting standpoint, it seems a very difficult policy. Nonprofit law around the policy may also be difficult to maneuver through.

However, if the funds go toward receipts to be reimbursed or monies paid to a vendor, it's okay because the family isn't financially gaining from it; they're just getting reimbursed for expenses that the organization has stated are eligible expenses to get reimbursed. The Boy Scouts are an excellent resource on this, as they do precisely this for camp expenses.

In another instance, an organization inquired about how to best aid volunteers who want to organize fundraisers but have no funds of their own to do this; they asked whether the organization's funds should be used to assist in the volunteers' effort. In order to prevent this question from becoming a perpetual issue, one option is to create a policy that all volunteers that want to organize fundraisers must be self-sufficient and thus not require any funds from the organization. There are a few ways for volunteers to reach this self-sufficiency:

  • The event's organizing committee can obtain underwriting from a donor or sponsor.
  • The organization can ask for a budget from the volunteers before they spend any money. In this case, a member of the organization may be able to help the volunteers see where they can get revenue to cover expenses or perhaps ask them to change their fundraiser if they do not have the means to cover any fees.
  • The volunteer can use a credit card to cover a fee if necessary and then pay the bill when due with money that was raised at the event.

Overall, there are many fundraisers that do not require any funds to plan and those that do can have their expenses covered by the revenue coming in either by donations, sponsors or other means.


As organizations integrate technology more and more into their day to day activities, electronic fundraising appeals are being used more frequently. There are many different companies that you can use. Some suggestions are:

  • Constant Contact - It allows you to format attractive emails. They have templates to make that easy. They also give you statistics on how many people opened your email, whether they clicked on a hyperlink that you have included in the text, if it was forwarded, if the email is no longer valid, plus others. They also offer a non-profit rate.
  • Graphic Mail - Offered a group 5,000 free sends
  • Lyris - Offered for $100/year through Genetic Alliance. Allows email campaigns, templates, tracking, etc.
  • MailChimp

Tips to consider:

  • I would not advise putting an appeal letter in a PDF. Most people will not bother to click on it – especially if they know you are asking for money.
  • Do you have the capability to accept donations online? People who are already on the computer often just want to click on a donation page to complete their contribution.
  • Sometimes these campaigns get flagged as spam. Work closely with the company to avoid having your message blocked by many people's filters.

Fundraising through Auctions

Auctioning Consignment Items

Many organizations have auctioned off consignment items in their auctions along with donated items. Consignment items may include jewelry, art, and sports memorabilia. There are trade-offs using consignment items you must consider.


You don't have to solicit the items yourself (or constantly bug your committee).
You only pay if the items sell.


If the items are big-ticket items, it may draw money away from your donated items that will yield you a full profit.
Someone needs to monitor the consignment items to make sure that no one "accidentally" walks away with something (i.e. jewelry). If there are a lot of items, you can ask the consignment company to do this for you.

A great way to keep things organized is to create an auction booklet. Group all the consignment items together and CLEARLY label them as such so that guests know you are only receiving a portion of the sale.

If you choose to use a consignment company, make sure you have a clearly written contract that specifies the percentage of the sale that you will receive. Some organizations may also charge the consignment company for their credit card fees. If a donor makes their payment to the organization via credit card, they can calculate the portion of the sale that goes to the consignment company and subtract out the credit card fee associated with that.

Tips and Foundations to Help

ABC’s of Fundraising
Prepared by the American Cancer Society with ideas for raising money for their Bike-a-thon, it includes an extensive list of fundraising event ideas.
Alliance for Justice—Foundation Advocacy Initiative
Educates grantmakers on their legal rights to support nonprofit advocacy work by providing workshops, technical assistance, and plain-language legal guides.
Charity Channel
Provides information and resources for nonprofit professionals to connect, learn from each other, share information, and work together.
30021 Tomas
Suite 300
Rancho Santa Margarita, CA 92688-2128
Phone: 949.589.5938
Email form
Council on Foundations
A membership organization of more than 2,000 grantmaking foundations and giving programs worldwide. Provides leadership expertise, legal services and networking opportunities to members and to the general public.
1828 L Street, NW
Washington, DC 20036
Phone: 202.466.6512
Fax: 202.785.3926
Donors Forum
Donors Forum is a nonprofit membership association that promotes philanthropy and a strong nonprofit sector in Illinois.
208 South LaSalle
Suite 1540
Chicago, IL 60604
Phone: 888-578-0090
Fax: 877-572-0106
The Foundation Center
Provides information on US philanthropy, conducts research on trends in the field, provides education and training on grant-seeking, and ensures public access to information and services.
79 Fifth Avenue/16th Street
New York, NY 10003-3076
Phone: 212.620.4230
Fax: 212.691.1828
Grassroots Fundraising
Creates and distributes accessible materials that teach people how to raise money.
1904 Franklin Street, Suite 705
Oakland CA 94612
Phone: 510.452.4520
Fax: 510.452.2122
Participation Matters
A guide to effectively raising money and awareness for PPMD
A guide to legal procedures when raising money for Parent Project Muscular Dystrophy (PPMD)
Media:Participation Matters Guide.pdf
Raising More Money
Trains and coaches nonprofit organizations to implement a mission-based system for raising sustainable funding from individual donors.
2100 North Pacific Street
Seattle, WA 98103
Phone: 206.709.9400
Fax: 206.352.9492

Examples of Fundraising Policies

Website Fundraising Opportunities

Use social media to simultaneously promote your organization and fundraise. Donations can be made through the Causes application and are then delivered to the organization monthly.
To learn more about Facebook Causes see the entry on Social Networking.
Flower Power is a fundraising tool that allows people to fundraise for a non-profit organization by selling plants and flowers through either a face-to-face catalog or an online fundraiser. The company offers 50% profit on every sale.
Many disease-specific advocacy organizations are using this as a fundraising measure. It takes time for your money to add up, but if you can spread the word and use it, you will get the funding. The main trick is that people have to click the sponsored links in order for your organization to receive money, so every so often I go in and click some sponsored links. It is powered by Yahoo! so it is a fairly good search engine. Basically, you don't lose anything by having it and you may actually gain some money with it!
Customize and sell your own cookbooks
Design your own keepsake awareness jewelry

Thread Topic: Fundraising/Third party

This thread is organized to answer the following question posed in 2015 by Kelly Trout, a Health Consultant with International WAGR Syndrome Association:

One of the families in our group is apparently planning a fundraiser which will raise money for both her own family's medical expenses and for our organization. I'm sure this is a violation of at least one - probably several - regs/laws. Does anyone know specifically which one(s)? And if so, where - in the labyrinth of IRS rulesnregs can I find it?

This thread does not include joint fundraising information.

Dean Suhr, President of MLD Foundation, replied:

Hi Kelly,

I am not an attorney and this is not legal or accounting advice … run this by your legal team before acting on what I write … ;)

FAMLY RUN FUNDRAISERS Families often want to hold a fund raiser where the 501c3 is not processing the individual donations. The family collects cash and checks made out to the family, keeps 50% of the funds and then sends balance to the the 501c3 in a check. In this case, the donation is deductible only to the person who wrote the final check to the 501c3 and only in the amount of the check, but it’s not deductible to the individual donors. The is because only the person writing the check actually donated directly to the 501c3. Even if the family gives their supporters your EIN number in a thank you note (families cannot write tax deductible donation receipts) that does not make the individual donations tax deductible – only the 501c3 can receipt donations and only when the 50c3 receives the funds directly from the individual donor. If the individual donors take a deduction on their taxes for cash or check given to the family, even for 50%, that is between them and the IRS … and is not legal even though the intent was right. And please note, checks made out to the 501c3 that are collected by the family are deductible to the individual writing the checks. Those checks are cashed by the 501c3 and can be receipted as donations.

"Payments to individuals are never deductible” Publication 526: You cannot deduct contributions to specific individuals, including the following. … Contributions to individuals who are needy or worthy. You cannot deduct these contributions even if you make them to a qualified organization for the benefit of a specific person. But you can deduct a contribution to a qualified organization that helps needy or worthy individuals if you do not indicate that your contribution is for a specific person. Example. You can deduct contributions to a qualified organization for flood relief, hurricane relief, or other disaster relief. However, you cannot deduct contributions earmarked for relief of a particular individual or family.

THE BIGGER PICTURE This whole area is fraught with confusing information. As we understand the law, and according to attorneys we have contacted regarding this: • a donation made to a 501c3 is generally 100% tax deductible if no goods or services are provided in return • an individual donor has no binding say about how funds are used after donating to a 501c3, as the donation transaction and the 501c3’s use of the funds are separate arm’s length transactions • donations can be made to a specific mission or program of the organization, often called a “designated” donation, are tax deductible … but note that these designations must be related to charity programs, not individuals. • a donation made to a 501c3 with the donor designating a named person or family is not tax deductible to the donor • a donation can be made to a program of the 501c3 (like a compassion or family support fund) that ends up benefitting a particular family and that family can may be used in the promotion as an example of the type of family that is supported - but the fine print must be clear the donation is going to the program, not the family. o We use an arm’s length independent Compassion Fund committee to make our family support decisions. They are arm’s length from us as leaders, the 501c3, and from the donors. So in this case all donations to our comparison fund are tax deductible and the Compassion Fund Committee (not the donor) determines which family grants are funded and in what amounts • A family cannot “borrow” your EIN to make donations their local fund raiser tax deductible. It’s your EIN, not theirs to use. • Only the 501c3 can issue tax deductible receipts, families cannot

DONOR ADVISED FUNDS The whole area gets grey when the 501c3 is a donor advised fund. Some families set these up for themselves using local Community Foundations where a fund is set up in their name. The donations are technically made to the Community Foundation and a tax deductible receipt is issued by the CF. The CF is ”independently” making disbursement decisions, however, in practice, nearly 100% of the time, they follow the donor’s recommendation and send the funds on to the family. This seems to be not consistent with the intent of the law, but we’ve yet to be told this is illegal or improper. Some 501c3s that are not donor advised funds (most of the organizations reading this are not donor advised funds) set up named family funds, and issue tax receipts … This, in our opinion and that or the IRS is not legal and you run the risk of losing your 501c3 designation.

DESIGNATED GIFTS - THE RIGHT WAY And then with all of that said regarding tax deductibility, it is not illegal for an individual to write a check to a charity stating it is for a specific person or family, however, the deduction is not tax deductible to the donor, and the receipt you issue to the donor should indicate as such. The 501c3 can then send the money to the specific person as part of their family support program. The 501c3 would report this activity as part of the same 990 program sub-total as other tax-deductible gifts. Note that 501c3s do not report on they IRS 990 whether a donation is tac deductible, only what comes in and how it is distributed. The key distinction is whether the donor can legally take a tax deduction.

SPLIT FUND RAISERS - THE RIGHT WAY Split beneficiary events are not illegal as long as the funds and receipting are handled correctly. We have found, depending on the organizer and the local community, split events can actually net both parties more money than a family only or organization only event. Some people will donate more aggressively when they get even a partial tax deduction and some people are more inclined to donate when they know a portion of the funds are going directly to the family.

So what does this mean to a split fund raiser … you can do it, you just must be clear to donors. We do this by partnering with local families since they have the connection with the local community, however, we have a very structured approach. 1. We host the event web site and state very clearly on both the information and donation processing pages that the donation is being split 505/50 and only 50% will be tax deductible since that is all that is coming to us, 501c3. 2. We, using our custom developed Event Management System, process all registrations, all of the donations are processed by us, including checks which must be made out to us. We station the receipt that only 50% of the donation is deductible. 3. Corporate sponsors and those donating goods or services to the even often will not donate to a named family so 100% of the donation is noted to the Foundation and a receipt for 100% is issued. we do not split these funds with the family, but usually they are good or services for the event or a check that is offset by expenses so we don't benefit directly, rather the event benefits and we then benefit for good event. 4. After all expenses are tallied and usually split 50/50, the amount due the family is calculated and a check is cut for them. We report 100% of the income and report the check to the family as a program activity.

I am happy to try to answer more questions. You can see one of our split fundraisers in action and how we make out statements about deductibility here <>

A similar question and thread of answers too 2014:

The thread answers are based the following question from 2014:

Danna L Mayer, Executive Director of The Cholangiocarcinoma Foundation, was interesting in knowing how other organizations handle requests to publicize events from individuals who are fundraising for personal expenses rather than the Foundation?

This thread covers the following topics:

• How organizations handle requests to publicize events from individuals who are fundraising for personal expenses rather than the foundation. This also includes family fundraisers that have been granted 501c3 status.

• IRS information (See Jim Moore’s response)

• Organizations experiences with families requesting fundraisers or funds set up for their medical expenses

• Nonprofits to help families raise philanthropic dollars for their own medical expenses

• Copyrights on organization logos and use of organization’s logos throughout family/personal fundraisers

Thread from 2014:

Dawn Williamson, President & Founder of CHERUBS (The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support), replied:

We also get requests from families to fundraise for them specifically or to set up funds for them (funneling money through our charity so donor would get tax breaks). Families sometimes actually get upset when we decline to do this because of legal and ethical implications and go to less ethical groups who will do it. It's a thin line between doing all you can to help struggling families and being the "bad guy" for not doing more.

Brenda Conger, Executive Director or CFC International, replied:

We don't publicize any personal events and do not allow the use of our logo or website linked to these events.

Susan L-J Dickinson, Executive Director of The Association for Frontotemporal Degeneration, replied:

Same here. I explain to people that we’d lose our 501(c)3 status--that this is not what our mission covers. Yes, some of them still get angry. There is a nonprofit--HelpHopeLive--whose mission is to help families raise philanthropic dollars to cover their own medical expenses. There may be other organizations like this…

Jim Moore, Executive Director of AXYS, replied:

Organizations need to be very careful about fundraising for one person’s needs.

Note that line two states: “Payments to individuals are never deductible..” So asking donors to support an individual not only saps your organization’s fundraising capacity, it also puts your organization in the position of having to explain that any donations to the individual or family are not tax deductible...even those laundered thru a charity.

I realize you are talking about individuals making direct appeals through your organization, but the best answer in those cases is for the organization to have a PROGRAM to assist individuals rather than the organization fronting appeals from individuals to your constituency.

The rules are even more convoluted, because “FEDERAL TAX LAW—Under Federal law, an existing qualified charity gener¬ally must be given full control and authority over the use of donated funds, and contributors may not earmark funds for the benefit of a particular individual or family. Contributions to qualified charities may, however, be earmarked for flood relief, hurricane relief, or other disaster relief.”

So donors should not be specifically dictating that their donations are restricted to a particular individual or family. The donors give the money to the organization, perhaps earmarked for the “family support program,” and then the organization INDEPENDENTLY doles out the money as the organization sees fit. Complex? Yes...absolutely. Suddenly, the organization is faced with raising the money, setting up reasonable criteria for applying and vetting applications, and for determining the amount of support offered to the individual.

But the rationale is simple. A direct donation from a donor to an individual is NOT a donation. It IS a gift. Individuals can give and receive gifts, but there are sometimes tax implications to gifts that I will not explore here. Gifts are not tax deductible to the giver. They may incur tax liability to the recipient. And charitable organizations should not be laundering gifts, nor should they be enabling donors to “play favorites” with who gets support. That’s the organization’s job. Please don’t shoot the messenger.

Disclaimer: I am not an attorney or a CPA. All comments shared are opinions only, and they are not, nor should they be construed to be counsel. Please seek counsel from an attorney or CPA.

Sharon Terry, President and CEO of Genetic Alliance, replied:

Indigogo has asked Genetic Alliance to help identify families that need money to cover medical and other expenses… We will be coming to you all with more info soon.

Patricia Wood, President of NBIA Disorders Association, replied:

What does everyone think of a family that started an organization and has been granted 501 c 3 status and this is their mission: “To provide ongoing financial assistance to XXXXX (name of NBIA individual) in her fight against Neurodegeneration with Brain Iron Accumulation (NBIA), a rare neurological disorder, and subsequently support research for a cure.” All board members are relatives of this person they are raising money for – including both parents and aunts and uncles. Did the IRS allow it because they tacked on that they would also raise funds for research? Here are their goals:

•Home Care support

•Wheel Chair Van

•Immersion pool with lift

•Establish fund for research – they are only interested in the disorder their daughter has, so would only be funding that particular one. Our organization’s mission is to support all of the NBIA disorders (10 and counting) and we try not to encourage splintering into separate groups just raising for one disorder. We don’t have any others yet so have been pretty successful up to now.

How can they even make any board decisions without it being a total conflict of interest? They say they plan to raise $500,000 this year for research but I think that is unlikely and anything they raise will go to help their child. They copied some of our information that is on our website word for word and used our logo on their site, all without permission. The logo is under resources and clicking on it sends someone to our site. We do want awareness of the disorders and if people are referred to our site, they will learn much more, but are we giving approval of their organization by letting them use our logo this way?

They sent me an email with a press release announcing their organization and asked us to publicize their organization in our newsletter. I haven’t responded yet and am struggling with what to say. Anyone with experience or thoughts on how to handle this?

Jackie Clark, with Share and care Cockayne Syndrome network, replied:

We've had several families only raise money for themselves or make a name on Facebook that is their child's name "XXX 's CS journey" that almost acts like a caring bridge site but they ask people to give them money directly in order to pay for medical expenses. But I often see these families take a trip to Europe and get things that are frivolous (tattoos) or that you'd think they couldn't afford. One family has applied for 501c3. We don't feature any of these on our website but we did once try to have a post on our Facebook fan page asking families to share their links to their pages (under the comments section) for their kids, but no fundraisers. I took this idea from MOM's ( mothers of miracles FB page) they also mention that they keep a list of these on their website. Only a few of our CS families posted but I thought it was a nice gesture. Some of the families have started real charitable organizations where it really benefits other people. But we've also seen a lot of shady people in our group. But the organization in this original post obtaining 501 c3 status is scary. I predict they won't do things properly and eventually get lose status in 5 years.

Facebook has been our main way of keeping families connected to help each other.

I'm sorry I dont think I've offered any useful advice. In my opinion id ask them to remove your logo and the link to your website or give them exact wording that you can say you require ( such as description of your org and your mission statement) in order to put a link on their website to yours.

We have families who really need help who can't even afford a computer to access the internet for support.

I love this genetic alliance group, (google group )it has been the best help to me since I've started running share and care in 2006. It makes me feel better when I see that other groups have the same experiences and challenges that we do.. And it's nice to get good advice on ethics too.

Dawn Williamson, President & Founder of CHERUBS (The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support), replied:

We have had to deal with many ex-volunteers and families creating Facebook pages and claiming to be non-profits or asking for donations to file to become non-profits. They all have logos, their own ribbons, a few even create web sites. They market themselves as if their 5 minute "charity" is at the same level as our 20 year old charity even though they have no experience at all and offer nothing. It's the Facebook trap of people who need attention suddenly getting some on social media - the new era of Munchhausen Syndrome by Social Media Proxy. It would be nothing more than an annoying distraction if other families weren't supporting them and donating to them versus legitimate charities. Because they are "friends" and they want to support "all people raising awareness". They do not see it as dishonest or a con job at all because at the foundation of it is a child / family who is affected who seems to "genuinely" want to help the cause (without following any laws or rules). If we bring attention to that we are the ""bad guys feeling threatening by the new 'charity'". Some even list their "volunteer work" at our charity (down to 1 minute tasks. They conveniently leave out all the work they didn't finish or why they are no longer part of our charity) - just to get the google hits from our name and to make themselves seem part of something legitimate.

Best to just ignore it because those "charities" never evolve into anything real. Unless they infringe upon your trademarks and copyrights - then have your attorney nicely ask them to stop. Good charities cannot afford to be pulled into social media drama or fake charities. And as the "big, bad official charity" nothing you say or do will be perceived as anything short of bullying the "new, little guys". Frustrating, but true. It really is a new era. I wish Facebook would label those who are registered, real and official so that families and donors can tell the difference.

Janet Long, Executive Vice President of haea (The US Hereditary Angioedema Association), replied:

Wow – I could not have written it better, Dawn! Well-said. We share the exact same rogue FB group experience (clouded even more by the pharmaceutical co. and associated agency FB pages) and have come to the same conclusion – we try to ignore the social media noise and continue to extend our philosophy of caring and compassion to all and trust that our integrity will win the day….

Kismet1565 replied:

Stickler Involved People does not. However, we were tempted when one of our younger adults could move on her own with an aid dog and she needed $$ for training.

Lisa Schoyer, Past President and Current Secretary of CSFN (Costello Syndrome Family Network), as well as Founder and President of RASopathies Network USA, replied:

Neither Costello Syndrome Family Network nor RASopathies Network USA do either, having found the same info that Jim posted earlier in this strand.

In the past (pre-FaceBook!) I was told the Boy Scouts of America encouraged individual scouts to fundraise using the Boy Scouts logo and nonprofit status to cover the cost of the individual scout's travel expenses for the annual jamborees - by a seasoned Boy Scout Leader. This gave me a moment of false assurance; I'm still not sure how the Boy Scouts did it (does it? if they still do).

I also knew of a small charity that helped bereaved (and indigent) parents fundraise to cover the cost of their children's funerals. The charity would allow the parent to fundraise using the charity's 501c3 status, receive the funds, and pay the invoiced funeral expenses. I would guess, given the IRS 501c3 rules I've read, that this charity pretty much has (had?) chutzpah.

Shelley Bowen, Director, Family Services and Awareness of Barth Syndrome Foundation, replied:

Janet, We too have a number of families who have created personal social media sites for personal purposes. It would be wonderful if the funds raised in those appeals were coming to BSF but I can't think of any of these families who aren't completely devoted to our cause. Unfortunately most of those families are struggling financially to keep their head above water. Every one of those boys are there to participate in research opportunities. Their parents are always willing to help another parent and a great many of these families raise funds to attend our biennial conference. We make it very clear that our logo is not to be used in any fundraising effort that is not benefiting our mission. To date, our parents have fully understood our reasoning and been responsive to removing the logo upon request. We have made every effort to harness these families energy to help us propel our mission. They are very savvy about social media and are generally members of numerous social media pages. By educating these families with the facts about Barth syndrome they have become our ambassadors of the mission. They have found awareness opportunities we haven't even heard about and share what they have learned with us. Ultimately we want our boys to thrive and be well and if the family doesn't have the resources to pay for medical care that isn't good for their children. We have benefited significantly by harnessing that energy and directing it toward volunteer opportunities. These are the miners of the Internet and the social media experts. That is what has worked with us. Our group is of the size that I do have the opportunity to communicate with these families on a regular basis.

Sharon Terry, President and CEO of Genetic Alliance, replied:

You can be, as Jim pointed out, a grant making organization and be nonprofit – but you need to do so according to strict guidelines and transparent mechanisms…

Jim Moore, Executive Director of AXYS, replied:

Lisa, You mention the Boy Scouts experience. The fact is that many nonprofits engage in what are technically illegal practices, because they simply don’t know the rules. In scout-leader training, for example, such nuanced and esoteric subjects as nonprofit fundraising tax law simply don’t get the attention they deserve. There are too many other things that need to be prioritized. Then there’s the pragmatic fact of not “asking permission, and asking forgiveness instead.” In a very practical way, scouts could go out and fundraise to support their personal adventures, but the aggregate result would largely support the “group” rather than the “individual.” LOTS of schools engage in the same behaviors to fund class trips, etc. I would not want to respond to an audit addressing those questions, but it’s likely the IRS would “look the other way” for a storied organization like the Boy Scouts. I am not suggesting that the scouts are deliberately circumventing nonprofit law. Instead, widespread ignorance in a volunteer-heavy organization can lead to many unintentional and fairly innocuous breaches. The same is true when organizations fail to understand rules around “fair market value” (FMV) of goods and services exchanged for gifts. Whether it’s the value of the “gala dinner” or the items sold at a charity auction, many nonprofits can’t muster even a basic understanding of FMV, who the donors really are, and what is actually tax-deductible. Fortunately, while propagating false information about these things is not well tolerated, the real responsibility for understanding tax law falls on the donors. And most substantial donors rely on professional accountants to prepare their taxes. In those cases, the tax preparer is professionally obligated to know the rules and apply them appropriately. So a lot of this “misconduct” and misrepresentation slips away unnoticed.

P.S....and the Boy Scouts may incentivize scouts to raise for themselves, but the organization may well pool the money so that they are on the right side of the law.

Jim Moore also replied:

This is murky, Patricia.

Two things come to mind: 1. No-one has complained to the IRS. You’d need to see their articles of incorporation, bylaws, and their 501 (c)(3) application to see what they told the IRS they intended to do...and how that compares with their stated mission. The IRS does not police this stuff without a complaint to trigger an audit or investigation. 2. They clearly have a charitable mission (research) and a non-charitable mission (support for one individual). It’s important to note, however, that fundraising for individuals, while not a charity mission or tax exempt/deductible, can be done. These happen all the time for, say, house fire victims or for individual injured returning soldiers, or for victims of accidents. “For profit” fundraising is legitimate, but these efforts are often orchestrated under the supervision of a 3rd party that does the accounting, appropriate reporting, and pays the taxes on behalf of the impromptu group. In your case, however, you have a splinter group that is siphoning off support, and based on your description, may be somewhat deceptive in its practices if it’s not elucidating the difference between the efforts for the individual and the efforts for research. If you suspect that they are playing fast and loose with the rules, you may want to take some action, but that’s well beyond my understanding of the specific case in question.

As for the plagiarism and copyright infringement...and misrepresentation of their affiliation with your organization...I’d nip that in the bud, first privately and then publicly if necessary. By your description, they are “trading on” your brand and stealing your work.

Patricia Wood, President of NBIA Disorders Association, replied:

Hi Jim, Thanks for your insightful comments. This group just received their non-profit status last month and put out their first press release, so perhaps someone will complain about them to the IRS at some point. Are the articles of incorporation and bylaws a public record that anyone can request to see? I hesitate to get involved though for fear what Dawn said will be how it is perceived: “And as the "big, bad official charity" nothing you say or do will be perceived as anything short of bullying the "new, little guys". I understand that families can fundraise to help with their own expenses and have no problems if it is done properly. We do not lend our logos to those efforts, as others have mentioned. I’m thinking of asking the group to acknowledge the source of what they copied from our website and put a link to our site with it, but to remove our logo from their site. We do not have our logo copyrighted, so does that mean anyone can use it and we don’t have much say? I would like to know how many other groups have copyrighted their logos and what other items they have copyrighted and the cost involved. Would you say it was a good investment?

Dawn Williamson, President & Founder of CHERUBS (The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support), replied:

We created our awareness ribbon and let anyone use it for anything at all without restriction. We do not let others use our logos or name without permission. Be careful to not step on the cause if you copyright or trademark anything. We had a splinter group trademark "Congenital Diaphragmatic Hernia Awareness" and threaten to sue us anytime we said it. They thought this was good business practice somehow and protecting what they "claimed" was "theirs"". 2 years of court battle later, we won. But what a waste of time and energy even though our attorneys were pro bono.

Sharon Terry, President and CEO of Genetic Alliance, replied:

Genetic Alliance and PXE International trademark all of our marks – and it is free because I just follow the directions on the TEAS website and file for us.

Marie Malloy, from CdLS Foundation, replied:

We have had this problem as well -- our families don't understand why we can't "lend" them our 501c3 paperwork and provide logos and materials. Simply put, its misleading to the donors, who may think they are supporting a nonprofit with a tax deductible gift. We also have had issues with people using our logo w/o permission and they do not understand the concept of branding and why its important to follow the guidelines. We recently created a logo use policy and revocable license agreement. We are also in the midst of trademarking our logo. Both give us more ground to stand on if we have to confront someone.

Jim Moore, Executive Director of AXYS, replied:

Copyright often is more of a declaration than formal registration of ownership. You may be talking about a trademark. AXYS trademarked its name/logo, and we registered the trademark. We paid over $700 to research and register the trademark, and that was only a fraction of the true cost...most of which was donated as pro-bono services.

Meanwhile to copyright your material, you can go through a formal process, but few do that. Instead, you simply declare it with the symbol and statement. I worked in television, and we copyrighted every newscast, and all other media respected the copyright...or risked vigorous litigation. We never registered those trademarks...we produced about 8 to 10 live shows per day. Example: ©Copyright 2014...all rights reserved. (the copyright symbol is in your symbols font.)

Our website contains a simpler statement: Copyright 2014 by AXYS

The simplicity of a copyright is fairly important to managing the huge volumes of original material most organizations produce. Registering a copyright on anything less than a book or movie is too onerous.

One can register a’s an illustration:

As I understand it, trademark protects you from someone else actually stealing your opposed to what is happening...someone trading on your name. They are not pretending to be you, or using your name to describe another organization, they are, instead, pretending your organization endorses or supports their work.

My personal inclination is that you should fully enforce your ownership and enforce “fair use” and “crediting” standards. The use of your logo is absolutely verboten except when legitimately referencing your organization...but not trading on its “good name.”

Fair Use:

Crediting: that’s a Google return with lots of resources

The other group is taking advantage of your work and good name to generate revenue, and this truly violates both the letter and spirit of the laws regulating intellectual property. P.S. The fact that you didn’t declare a copyright or trademark may not limit your rights. A college professor was recently fired and sued for plagiarizing a student’s work. Students don’t copyright their work, and yet they own it. This illustrates that a work that exists prior to the plagiarism and can be traced to the owner/author is still owned by the owner/author. It’s a harder struggle, but being able to trace the origins of a work and subsequent “unfair” use by another party is quite compelling. Once again, Disclaimer: I am not an attorney or a CPA. All comments shared are opinions only, and they are not, nor should they be construed to be counsel. Please seek counsel from an attorney or CPA.

Patricia Wood, President of NBIA Disorders Association, replied:

Thanks for the great information! I’m going to add the copyright line to our website and look into trademarking our logo. Thanks to all who gave input on how to handle this new organization. I will discuss with my board what others have experienced and what our choices are, as to next steps to take with this group.

Dean Suhr, President of MLD Foundation, replied:

Copyright, Trademarks, etc. [was: Fundraising for Personal Expenses]

In addition to putting the copyright notice on all of your materials, including the footer of each web page, I would also suggest you consider having a usage/reference policy in your website terms of use. We find that having things written down makes it easier to respond to requests, and certainly makes it easier to enforce/notify if someone is stealing/violating/infringing because the policy is written and we can show it pre-dates the infringement (notice that we keep a revision history on that page as well)

Our Legal and Trademark page on our website has the following sections: - Copying, Pasting, and Copyrights (what we have been talking about) - Linking & iFrames (repurposing our website pages) - Trademarks (current topic - note that for clarity we list/show our trademark phrases and logo)

You are welcome to copy any use any and all information on our legal & trademarks page for your own organization(s).

Families, and even some organizations, often copy our disease descriptions word for word to their site. Their hearts are good in terms of education and awareness, but that' simply the wrong approach. We often do a Google search for some key phrases we have embedded in the disease description to find violators.

It is very import that you notify all infringers in writing, Frankly, it's less important from a legal perspective if a family infringer actually removes the content than it is if it's another organization or company, but your obligation is to treat all infringers equally and you must notify them all -- otherwise an infringing organization could say you are selective about or not protecting your ownership rights.

Second to our disease description and research updates, the most commonly copied MLD item is our logo butterfly. Often it's for a private fund raisers (or tattoos!). They equate, thanks to our hard work, our butterfly logo with the disease so it makes sense to them. We usually will grant permission to use the butterfly, as long as our URL and the copyright symbol are both present - and where possible, we try to keep the branding colors intact, too. We often give use permission for private fund raisers as long as they make it clear that donations are not coming to us and are not tax deductible - this builds awareness & credibility of our organization, strengthens relationships, and often nets us some direct or indirect donations.

Some ask how we can copyright a butterfly ... take a close look and you will see this is not an ordinary butterfly. It has a faces in the bottom of each wing. See story here and a large version of the logo here. Notice how we, in a more subtle way than on the legal and trademark page, have also reiterated portions of the usage rules on this page (note that generally it's not a good idea to have a policy printed in two places, unless you are very careful to maintain consistency.)

Joint Fundraising

This thread is organized to answer the following question posed in 2014 by Jackie Clark, with Share and care Cockayne Syndrome network:

I have a family in Colorado who offered to have a fundraiser for my organization Share & Care Cockayne Syndrome Network (SCCS). They would like to have help from a local charity in Colorado and have this be a joint fundraiser. I looked up the organization and they have filed 990's each year they seem to be doing good work --- it's a family charity to support families who have kids with terminal illnesses. Our major fundraiser is called the "Butterfly Walk" for Cockayne Syndrome we have them around the country organized by various families and collect registration and donations through Firstgiving. Firstgiving is not able to have a joint fund-raise and allow the funds to be split automatically.

Do any of you have experience with having a joint fundraiser or know of a way to have the funds split between the two organizations? We'll need to split expenses too.

This thread covers the following topics:

• Join fundraisers

• Splitting funds between two organizations

• Event management System

Marie Malloy, from CdLS Foundation, replied:

We have one annual fundraiser run by a family who designates half of the funds to us and the other half to a local worthy cause. We handle all of the finances and distribution of funds in the end. We had a conversation with our auditor about it many years ago when it started just to be sure there were no issues.

Dean Suhr, President of MLD Foundation, replied:

This is more than you asked for, but it’s our experience with partnering on events.

Our goal with an event partner is to make the back end admin stuff as easy and transparent as possible … with the “hidden" benefit to us that we control (i.e can account for) the funds and we hold the donor contact information for the long term. Event organizers and families can then focus on what they do best … local PR, logistics, local vendor contact, local planning etc. They do not need to learn or know anything about the back end admin. The result is that we are a working partner but we can do it from afar.

1. We split funds in some of our most successful fundraiser events, but only on the following terms. I'll start with events that we split with families and conclude with those that benefit other orgs:

2. We know and trust the family that is benefitting from the event. Partnering with someone you don’t trust is not worth the money.

2.1. We have an Event Overview and Engagement Contract we ask first timer’s to sign that details all of the following, clearly sets expectations, and answers the most common questions that we often use with first time event partners. It’s always nice to have stuff in print up front.

3. The split is agreed up on up front - you’d be amazed how greedy people get when the fundraiser is successful and raises a lot of money

3.1. We now only allow 50/50 splits - 50/50 is probably best for all parties because it keeps everyone motivated and in the same boat working together. We held several events early on where the donor could designate from 0 to 100% to us in 25% increments. The events always averaged out as 50% and frankly were a bear to explain to everyone so we’ve now simplified to a default 50/50 if the event is to be split. Of course we also partner on 100% to us events

3.2. We very clearly state to new event partners that a rising tide float all boats thing where we both benefit more by partnering and splitting the funds:

3.2.1. Access to our event management system (see below) removes nearly all of their administrative burden And we typically buy the event domain name and host a static landing page, so we have a hook for future years (because event names tend to live on) and also so we can get someone up pretty quickly. See for a recent event page. Note that the registration button goes to a MLD Foundation domain page Also note the sponsor plugs at the bottom. This is also database driven so we can instantly add and recognize a new sponsor (good PR with them!) We do encourage and allow the event organizers to take over editing and enhancing the landing page but all registration and payments are redirected to a page only we control.

3.2.2. The ability to engage corporate sponsors that will only write a check to a 501c3

3.2.3. The cachet and credibility with donors and press that there is a non-profit partner benefitting and that this is not a greedy self-centered family usually goes a long way

4. The split is stated clearly on the event registration web page and printed flyers - hype this up …50% of the funds raised goes directly to the XYZ family.

5. A statement follows the split saying only 50% of your donation is tax deductible - we are very clear about this. Funds that go directly to a family are NOT tax deductible. We don’t; make a huge deal about this, but we do not want any confusion and reiterate the same on the tax receipt.

6. The split is calculated after expenses and paid after the event reconciliation is complete … usually a couple of weeks after the event

6.1. We encourage the local family to get as much services donated or discounted as possible to reduce/eliminate expenses

6.2. We encourage they find local (cash, not services) sponsors to cover any remaining expenses

6.3. We ask the event organizers to send us a budget BEFORE the event so we aren’t surprised by expenses at the end of the event

6.4. We also include $1 per donor expense to cover mailing their (color) tax receipt and printing of brochures which we send to every donor

7. And perhaps most important, we handle all of data and money (or as much as possible):

7.1. We have a custom developed online event registration and payment system (databases everything and collects the payments)

7.1.1. Real-time online admin access to the event admin page for the organizer to see how registrations are coming They see the exact $$ we have in hand and we see what they have in hand … transparency builds trust and respect

7.1.2. Tracks t-shirts by size, types of registrations (children, family, adult, run or walk, etc.), other schwag available for purchase

7.1.3. Shows who has donated already and most importantly pledges that have not been fulfilled yet (check coming, pay later, etc). Has a built in automatic online reminder system to make you donation

7.1.4. Has the ability to message one or all participants to send updates (weather, additions, changes, etc), social media share requests, etc.)

7.1.5. Payment is encouraged in real time by PayPal, which is integrated into the system. Each Paypal payment is automatically recorded to the reg record by the server and includes the registration number for debit/tracing after the fact.

7.2. Paper registrations are allowed but:

7.2.1. The local organizer needs to enter all of the information into the event registration system as they receive the paper reg forms

7.2.2. Payments with paper reg from are usually checks ( or a pledge to pay online)

7.2.3. We do no collect credit card info on paper forms - they is a security risk and fraught with problems

7.2.4. Leave plenty of space for a legible email address … this is key to efficient communications, and where necessary, sending a custom link to accept the donation online

7.3. Checks are held by the local organizer until the event ends

7.3.1. We still require an online reg record for check donors … the local organizer is responsible for creating those records

7.3.2. Local organizer records checks as received (we call them pending until we actually get them) so we don’t send out unpaid donation reminders

7.3.3. Checks are sent to us in one big batch at the end of the event.

7.4. Cash is always tricky and discouraged … we tell cash donors that it’s really difficult to track them for their receipt and prefer check or online payment

7.4.1. We simply trust the local organizer with cash

7.4.2. A registration record is still required and created by the local organizer

7.4.3. Cash is noted as received just like a check

7.4.4. Once tracked, cash is subtracted from the local organizer’s expense check (we tell them this at the end to encourage them to account for everything)

7.5. The system generates a report and schwa bag label for when folks check in at the event

7.5.1. If unpaid this is clearly noted and a check, cash or PayPal Here payment is taken right then.

7.5.2. The label specifies what size t-shirts, etc. so the schwa bags can be prepared in advance … speeds on site check in

7.6. On site registration is handled with an iPad/iPhone that logs into a special shortened reg page capturing only name, email, and amount to donate … and then to the online payment page to manually enter the credit card info (if their is time) or a quick switch to the PayPal Here reader for the payment (this is not directly integrated yet so we have some post-event correlation of payment to registration to handle).

8. We do all of the receipting and thank you. Often we include a note that we reprint from the benefiting family in the envelope to the donor along with a couple of MLD brochures (all less than 1 oz).

9. We also retain all of the email addresses for future contact and updates (and next year’s invitations).

9.1. If a family tries to go it on their own the next year we are the ones with the reg details and emails.

9.2. As mentioned, we also own and ultimately control the domain name.

9.3. These, and most importantly a positive successful working relationship, give us some gentle leverage to encourage them to partner with us again next year. But note that we have “set free” events in subsequent years for a variety of (mostly good) reasons.

9.4. And note with families where you build lots of momentum over the years, when the loved one passes away (which happens all too soon with MLD), often the event can live on a year or two longer (or more) with use being the 100% beneficiary.

10. If the event is big enough we will fly to it to increase MLD visibility, answer questions, show support … and to handle onsite registrations (control those funds and contact info), and to support ancillary events like silent auctions. Our event management system handles runs/walks, basic registration, virtual events, silent auctions, and maybe in 2015 golf scrambles. We want to be a very valuable partner.

11. For tax and accounting purposes we record all of the payments to a family (or another organization) as a fundraising expense. We have no problem saying it cost us $10k to raise $10k. If a donor think we have too high an overhead we simply state how the events are organized. You cannot record a family payment resulting from a fundraiser naming them as a grant or program expense – That is a violation of IRS rules.

12. You mentioned splitting with other organizations.

13. Partner only with high calibre organizations that enhance your organization’s reputation

14. We’d use the same guidelines and try to be the people in charge of money and the contact data using our registration system as the hook to put us into that position.

15. Be clear in writing up front about the terms

15.1. Did i say get it in writing? … email is fine, but make sure everyone agrees on the following:

15.2. What the split will be

15.2.1. If we are using our event system and doing all of the back end management, receipting, etc., we’d frankly balk at less than 50% even if there were more than two partners.

15.2.2. We want to posture as being an event partner (headliner) while they are event beneficiaries

15.3. How and when expenses are covered (or not)

15.3.1. define expenses for other orgs … i.e. if they attend will the event cover their travel, etc.

15.4. What information you will or will not share with them afterwards (donor names, amounts, contact info, etc.).

15.4.1. As an event partner we’d probably start by not sharing emails

15.5. Who is in charge of communications to donors

15.5.1. The formal tax receipt needs to come from the org that processes the donation, in our case us. You can include a generic thank you from the other org just like we do with a family letter so everyone gets visibility.

15.6. How you will all be represented with regard to PR (online, onsite, and post-event)

15.6.1. size and placement of logos

15.6.2. who are event partners, who are “just" beneficiaries, etc.

16. If the other org is a 501c3 then of course 100% of the donation is tax deductible to the donor. Even with 100% deductible, I'd still be clear about the split up front in the publicity to the public.

FWIW, our Event Management System has been developed over many years to be optimized for the events and issues encountered by local families organizing a whole variety of different kinds of events. We enhance it with every new event by adding new features, often requested by the local event organizers – we try to never say no. To date, we haven’t opened the system to non-MLD events. That may change in the future but is not the case right now.

Catrina Byrge, CEO of PMG Awareness Organization, Inc., replied:

Thanks so much for that information. It was extremely helpful to me. May I ask if the event management program is something that can be purchased or is it something that MLD devised? We do not have much tech support (all volunteers here) but I finally found a volunteer who I think will do a great job. Yay! Anyway, thank you so much. I look forward to hearing more about your event management program, if possible.

Dean Suhr, President of MLD Foundation, replied:

Hi Catrina, There are two parts to what I described. The first is the process we use for events which you can certainly implement/adapt/change for your organization and events(s). I wrote all of that up in my prior post so you could do exactly that.

The second is the Event Management System that the MLD Foundation developed for our own internal use over the last 7 or 8 years. It consists of two servers with a custom built database driving PHP to the web, an API to connect to PayPal and a lot of scripts that implement the various communication, update, admin, payment processing, and display routines. If I had to guess, we have 400 hours invested in this project (all me). But I should note that most of these hours were in adapting the system to meet the special requests of a particular fundraiser, and we always over invested in those additions so that things would be plug and play for that feature with the next event rather than just band aids that would eventually break. The systems serves the event organizer, the registrants, donors, sponsors, PR, and all of the back end payment processing, pledge reminders, event accounting, thank you/receipting, etc.

The key is that this is not just an IT project … it’s a comprehensive system built to handle everything we needed as a 501c3 organization and that the event organizers needed to manage their events. An IT guy will build to spec so the burden would deb on you to be sure to include the marketing, event organizer empowerment & management tools, sponsor motivation, 501c3 accounting, etc. attributes. I wish I could give you a copy of our spec, but since I wear all of these hats I was able to do the development to meet all of these parallel needs without a spec. Admittedly, for all of its integration and automation, the system is pretty dependent on me to set up and run … that is something I need to continue to refine and document so others can follow in my footsteps.

You can do most of these things in standalone packages with limited or manual connection between them. There are many different race registration packages for example, but they don’t handle schwag, 501c3 receipting, sponsors, full event accounting, etc. And they will not allow integration of silent auction, or allow folks to simply donate but not register to run, or do the special things you need to do with a sponsor. Or you can purchase a variety of donor management systems, but they will not handle event specific functions. And those systems always have a fee, be it one time, per event, or per participant.

I don't write all of this to be feisty … I just want you to know, as you probably do already, that a comprehensive, integrated, and flexible 501c3 event management tool is a very big ask.

No, we don’t sell the system. It was not built with a user interface for that sort of an independent life so I am sure users would get frustrated and as much as I'd like to help the communiyt I don’t want to be in the software support business. And, as I mentioned, to date we have not allowed it to be used by other groups because we just didn’t have the time. It still has a bit of manual overhead in it, for example to match on site PayPal Here payments with auction winner records.

With that said, I am an unpaid volunteer at the MLD Foundation with limited other income so I would be willing to privately (not as a MLD Foundation project) enable the tool to manage an event for you. In doing so we’d have to agree on a fee of some sort to compensate for my time and any customization to support outside users.

If this is of interest, please email me off list, tell me a little about what kind of event you are planning, when you are planning to host it, when registration might open, and what you think a fair fee might be.

Jackie Clark, with Share and care Cockayne Syndrome network, replied:

Thank you all for your input advise from experience. It has helped me a lot. I am going to go ahead with trying the partnership fundraiser. I also like the advice about handling a fundraiser for a family and splitting the cost and making it transparent as well. Dean, if you would be able to sell your Event Management system, you would make a lot of money. We have been using Constant Contacts' "Event" system for our family conference registration and Firstgiving for our fundraisers and neither of them sound as good as your system. Thank you so much for taking the time to write out all of this great information, it was very helpful.

Dawn Williamson, President & Founder of CHERUBS (The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support), replied:

Very informative information, thank you for sharing I do have a question though... shared fundraisers for families that go through your accounting isn't considered funneling money? Our charity does hold fundraisers for specific families or create funds for them for this reason. Are you saying this is legal? We'd like to offer our families more help like this but don't want to break any laws or do anything that could even be perceived as dishonest.

Jackie Clark, with Share and care Cockayne Syndrome network, replied:

The way I understand it is that if the non-profit is splitting the donations with the family, then the donation is not 100% deductible -- only the 50% that is for the non-profit is deductible and the other 50% that goes to the family is a gift to the family (no tax deduction allowed). So if the donor gives $50.00 then you can thank them for sending the $50.00 and let them know $25.00 will be sent to the family and a receipt for their $25.00 donation to the non-profit.

Dean Suhr, President of MLD Foundation, replied:

Hi Dawn, Yes, this is tricky ground and not a place you want to screw up. If your community is like ours we get asked all the time if a family can "borrow" our 501c3 number for their local fundraiser so donations to the family can be tax deductible. Of course there is no such thing as a 501c3 number and it's against the IRS code to benefit a single family with a tax deductible pass through donation.

Note the key words "tax deductible".

It's not a problem if the donor knows up front that the portion of the funds going directly to the family is not tax deductible. We say so on the event info page, on the reg page and on the tax receipt letter where we say only xx% of the gift (whatever stays with us) and we list the dollar amount is tax deductible. How folks file their tax return is up to them and is not our responsibility. In this case we are just acting as a Non-deductible collection agency of sorts and it's entirely legal. FWIW, the split of funds makes the extra overhead worth our effort.

We do have a MLD Family Compassion Fund that any MLD family an apply to - and gifts to that fund are tax deductible. But the donation and the grant to a family are disconnected events. A donor can restrict a tax deductible gift to the fund but cannot restrict a tax deductible gift to a named family.

This area is of keen interest to us. I just arrived into Philadelphia to attend tomorrow's day long annual non-profit 501c3 legal forum on these and related 501c3 topics. If I learn anything different I'll pass it along here. We want to do everything we can that is legal to help our families.

Catrina Byrge, CEO of PMG Awareness Organization, Inc., replied:

Hi Dean, I'm sorry not to reply sooner. I just briefly read your email and I will need to read it through more closely as I am not at all the "techy" type. Lol I'm just replying now to say I haven't forgotten. I will have time over the weekend and reply. Thank you so much for all the information you shared with me. I look forward to discussing this soon.

Questions and Answers for New Orgs

Q: Should we allow families to use our logo as they conduct a fundraiser for an individual?

A: Here is one thought on this topic:

Shelley Bowen
Barth Syndrome Foundation

"We have a number of families who have created personal social media sites for personal purposes.

We make it very clear that our logo is not to be used in any fundraising effort that is not benefiting our mission. To date, our parents have fully understood our reasoning and have been responsive to removing the logo upon request. We have made every effort to harness the energy of these families to help us propel our mission. They are very savvy about social media and are generally members of numerous social media pages. By educating these families with the facts about Barth syndrome, they have become our ambassadors of the mission. They find awareness opportunities we haven't even heard about and they share what they learn with us."

A2: Here is another thought:

Dean Suhr
MLD Foundation

"Second to our disease description and research updates, the most commonly copied MLD item is our logo butterfly. Often it's for a private fundraisers (or tattoos!). They equate, thanks to our hard work, our butterfly logo with the disease so it makes sense to them. We usually will grant permission to use the butterfly, as long as our URL and the copyright symbol are both present. Where possible, we try to keep the branding colors intact, too. We often give use permission for private fundraisers as long as they make it clear that donations are not coming to us and are not tax deductible. This builds awareness of and credibility for our organization, strengthens relationships, and often nets us some direct or indirect donations."

Q: I have had people suggest that we make t-shirts to help raise money to help pay the cost of getting our advocacy website going. Can I do that without being a non-profit org.?

A: You can make t-shirts and sell them and solicit donations, but you have to be clear that your group is not tax-exempt. So anyone who makes donations to your group cannot take the donation off their income taxes and you will have to pay sales tax when ordering your t-shirts and collect sales tax for your state.

A2: Have you tried ? There is no overhead. Since you are not a 501(c)(3), you must state that and you can say all proceeds will go to XYZ Organization in the description…and be able to prove it (copy of checks, etc) if someone asks you if you did.

Q: How does a small org take care of online donations? What about PayPal?

A: For an explanation and suggestions, see the entry Taking Credit Cards on the Web.

Q: How do you know when to trust people to represent your organization and raise money in their community?

A: I have been thinking about having a form printed in triplicate for volunteers who are soliciting donations in their community. I would number the forms and make sure the volunteer running the event returns them all. The idea is to give us a way to track what is happening and to let the volunteer issue a donation receipt on the spot.

Below is a VERY rough draft of the information I want to put on the form.

Dear Business Owner,

PAGER Association helps kids who have acid reflux. . . . . blah, blah, blah. Explain who we are etc, etc.

One of our members is hosting an event in your community. We hope you will support the event by making a donation. PAGER Association is a 501(c)(3) organization and donations of money and goods are tax deductible. We hope you will be able to attend the event as well.

Part of the funds that are raised from this event will be spent in your community to raise awareness of the disease. Your local event sponsor will be working with us to increase awareness.

Feel free to contact PAGER Association if you have any questions or concerns about this event. Our main contact information is on the letterhead.

Please fill out this form. You can keep the top copy for your records. It serves as your tax receipt for your donation. The local event organizer will keep the other copies.

Here are the details of the local event Event Name __________ Contact Name _______ Address, etc _________ Event Date

Details about your donation Business Name _______ Contact Name _________ Address, etc _______ What was donated? What is the retail value? Describe the item in detail

Checks should be made out to PAGER Association. For extra security, please write the following information on the back of the check: For Deposit Only BB&T Bank Frederick MD. PAGER Association Events Account.

A2: We developed a piece called "participation matters", outling fundraising policies, use of logo, requirements, our 501(c)(3) and other information. It serves as a guide for those interested in fundraising and provides some information/credibility to individuals/companies involved in the process. Our families have found it helpful.

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