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Look at donations broadly. You can obtain money, equipment and supplies in this category. A donations campaign—or even an ad-hoc effort—can be combined with seeking foundation grants, as discussed above, to offer companies a range of options for being involved with your organization.

Obtaining Donations

Mary Ann Wilson, Administrative Director
Neurofibromatosis, Inc.

"In 1979, the Neurofibromatosis Mid-Atlantic Chapter started in my dining room in Mitchellville, Maryland. We mailed letters, seeking to identify families, to the local pediatricians listed in the Yellow Pages of the telephone directory. The Chapter needed an inexpensive way to reproduce information about the disorder and communicate with the families and health professionals about various resources and meetings we were scheduling.

The Washington Post published a feature article on the Mars family (that's right—the candy people) in McLean, Virginia just across the Potomac River. I wrote a letter to The Mars Foundation explaining the disorder, the support group just getting started, and the need for a copying machine to help make information available to families and physicians.

Knowing that a lot of different people make a high volume of copies in libraries, I visited the local library to find out the manufacturer of the copiers being purchased by the County Library System. The local representative for the manufacturer quoted us a good price for a tabletop copier after hearing our story.

In less than a month after writing the letter to The Mars Foundation, we received a check for $2,000 for the copier. Until we moved into bona fide office space 10 years later, we used only that machine. We then obtained a donated copy machine with a much larger capacity. That is another story!"

Accepting donations via an online platform is something that a lot of organizations are currently (or considering being) engaged in. While some have had success with PayPal, other organizations have found it more beneficial to use other platforms such as Stripe or Blackbaud.

The following is one organization's view on this:

"We use PayPal and have never heard of anyone complaining about spam or unwanted emails from them. I have had donors say they will not use sites where they do not know or trust the company handling the credit card payments, but that they will use PayPal because they believe it has a good reputation for safety and it is very well known. For donations where the donors put their credit card information on a donation envelope and send it to us to enter, we use Square, as there is no monthly fee like PayPal has for this service and they charge the same as PayPal for American Express, which many of our donors seem to use. Visa and Master Card fee is a little higher than PayPal but the difference doesn’t add up to the monthly fee, so it is still less expensive.

We have a donor database system and could have used their credit card service and information would have gone directly into our database, but there were much higher fees and they didn’t accept foreign credit cards, so we stayed with PayPal. And the daily deposits which they thought were a plus would have just made quite a bit more paperwork for us, so I prefer having control on when we receive our money from PayPal. We can do a custom import into our donor database but we have found it is often just as fast to enter it manually, as there are some items the import doesn’t catch and we have to go into the records anyway.”

International Donations

Many organizations are looking for ways to function and get donations internationally. This becomes especially important for rare conditions; the international support is quite necessary with a small population of affected individuals. Arrangements of this nature are a difficult issue, due to differing donation and tax exemption regulations.

The criteria for donations and taxes varies widely among countries. There are individual standards, though there is usually the expectation of a physical presence and offering resources and supports to residents in that country of agreement. Getting status as a charity in the country of operation might also be required. Here are some questions and plans to consider:

  • Eleni Z. Tsigas

Executive Director Preeclampsia Foundation

"...wondering if there might be some value in combining forces to set up an office in some of our key countries that would serve as a 'registered agent' co-op, of sorts. It would serve as the physical address and a local bank account could be set up. We would probably need to contract with a local bookkeeper (for a few hours a week at most, I might think) that would be responsible for taking in donations, allocating them to their respective organizations and then either paying expenses when the money is spent in country or if its allowed, to forward the money to the parent organization."

  • Lindsay B. Groff, MBA

Executive Director Barth Syndrome Foundation

Typically, donations are made within the country/area where we have an Affiliate, and the money is used there. However, the main organization in the US hosts the International Conference and the grant program. As such, our Affiliates can choose to support these two main programs given that the greater good will benefit no matter the country or region.

  • Marie-Claude BOITEUX


We have been considering this issue for many years and did not find yet the right way to set up chapters in other countries.We are in France and Cutis Laxa Internationale is the only support group for Cutis Laxa worldwide. There are several families in the USA and we thought about setting up a chapter there. The only points we went through with are: each chapter must be registered as non-profit in its country and you cannot deliver a tax receipt to be used in another country

There are many different types of agreements for managing your organization internationally, and it can be successful if rules, incentives, and representation for the international membership are taken into consideration

Please see our article on international offices for more information.

Donations from Canada

This thread is organized to answer the following question about donations from an organization in Canada to an organization based in the U.S. posted in 2015:

Inquirer: I am a new member of this group. I run a one-year-old 501c3, Usher 1F Collaborative, We are working to raise funds for research for a cure for Usher Syndrome Type 1F. Usher Syndrome is the leading cause of deaf-blindness, and Type 1F refers to our specific genetic mutation, which runs in those of Ashkenazi Jewish descent.’’

I have a question that I am hoping someone has dealt with and has a suggestion for us. We have promised to us a $10,000 donation from a Canadian foundation. However, they cannot donate directly to us without jeopardizing their Canadian tax exempt status. We looked into having them donate directly to one of the two U.S. researchers, who are the only ones in the world working on our mutation, but neither of their universities is on the Canadian government approved list, which is dependent upon the number of Canadian students who attend the university. Thus, we are looking for an intermediary who can accept the funds and transfer them either to our foundation or directly to the researchers. We do not care whether the funds go through us or directly to the researchers as long as they get there. Does anyone know of a way to accept Canadian donations? We thought about setting up a parallel foundation in Canada, but we would be in the same boat as we could not donate those funds to a U.S. researcher.’’

Responder 1 replied:

I wonder if the Canadian Organization for Rare Disorders might be of some help with this situation?

Responder 2 replied:

Generally, CORD, like any foundation has a problem being a passthrough.

Canada is very strict about this – we have had a couple of hundred thousand dollars sitting there for a couple of years.

We could only accept money once we had an affiliation with an approved Canadian University and they were doing actual research – because they would not do a pass-through either.

Responder 1: Wow, what a terrible catch-22! But I wasn't thinking CORD could act as a pass-through, but rather that it - or perhaps one of it's affiliated organizations - might be able to offer some guidance or experience.

Keep looking for people to ask about this, Melissa - and if they don't know/don't have an answer, ask them who else you might contact. If there's one thing rare disease organizations are good at, it's *finding a way, one way or another.*

Good luck, and please keep us posted on what you learn

Responder 3 replied:

The Canadian donation could be an opportunity to collaborate with a Canadian university lab to pay for a post-doc to do science on your syndrome...

We're doing something similar with (University of) Penn Medicine's Orphan Disease Center. We're fundraising, they're 1:1 matching, and doing the logistics to grant funds to a researcher, for research directed by our RASopathy advocacy network partners. (Anyone interested in donating to the Million Dollar Bike Ride? Here's the link to our page - -- The ride is this Saturday)

Responder 4 replied:

We have run into similar issues in two ways. We have a Canadian foundation that wants to give us money, but they cannot write a check to us in the US. Thankfully, we have a formal Canadian Affiliate who accepts the donation and uses it for services within Canada.

Our Affiliates support our centralized research grant program. For our Canadian Affiliate, they must first check if the organization is on the list of “qualified donees.” If the organization is not on the list, they cannot fund the research. I asked my contact in Canada about this and she said, “I have looked and spoken with our auditor about this, and unfortunately there are no exemptions or exceptions.” Inquirer: Do you know if there is a list of qualified donees other than US universities?

Responder 5 replied:

I am curious, has anyone ever funded a Canadian student or post-doc to travel to the US for training in a US lab?

That wouldn’t help your US researchers fund their staff, but it might help them build capacity in other ways.

Responder 6 replied:

While I am by no means an expert on this, my foundation (us based) works with a Canadian affiliate to find research. We write a contract for each project explaining are cofunding and the Canadian foundation then wires us the funds to be used towards the execution of the project. We have worked together to find projects in Canada as well as the U.S.

Responder 7 replied:

Can someone point us to the regulations that drive the “what’s raised in Canada stays in Canada” restriction. I'd like to learn the details .. is it only tax deductible donations, is it a constraint on all funds from a Canadian charity or just certain funds, how do the bylaws and mission of the charity affect their funding ability, what is the definition of a cross-border partner/collaboration, is it just a research restriction or does it cover awareness and education, etc. And if the answer is essentially a blanket “nothing leaves” - then how can we support our Canadian friends to change their policy and regulations - or is there a proverbial third rail here that no one wants to touch (and why)? It’s a new interconnect world where we all must strive to work together no matter the colors on the flag.

I could imagine the Canadian Parliament wanting to keep all of the charity funds in Canada to bolster their economy and research, but it is also a bit short sighted to think that they can’t or shouldn’t aggressively support research in their 10x the size southern neighbor or the rest of the world for that matter.

In the US, we are allowed to fund worthwhile research and other projects in any country as long as it is consistent with our mission. We must be public benefit to gain a US 501c3 tax exempt status, and so we are always mindful that what we do must have some benefit for US families … but for right now, for example, all three of the MLD clinical trials are in Europe and most of the basic science work that needs funding is in Europe. Our support of that work will bring benefit to US families.

Responder 8 replied:

We have literally JUST undergone the process of supporting the incorporation of what will become an “affiliate” of the Preeclampsia Foundation in Canada so these questions are fresh in our minds. Canada does not completely restrict the use of funds outside of Canada, but does place some fairly reasonable (IMHO) restrictions so that our fundraising efforts in Canada don’t only flow outside the country. They have somewhere in the neighborhood of 500 authorized 3rd party entities (e.g., academic institutions, other non profit organizations) outside of Canada that can accept grants and donations from Canadian organizations. In addition, a Canadian charity can “hire” a non-Canadian vendor to help them accomplish their mission. That could be a US charity providing technical assistance, for instance. They would look unfavorably to ALL the money leaving the country.

The regulations are all out of CRA and are pretty clear on this point. Where I believe they get ridiculous is that they don’t consider the distribution of printed or other multi-media materials on a health issue an adequate education strategy. And forget “awareness” - does not register as a mission area. I.e., they are very old school in terms of how public education happens around a health issue: organize a patient symposium, bring in didactic speakers, etc. I wouldn’t dream of suggesting a social media campaign, for instance!

I like some of the creative approaches suggested by Sharon to expand the leverage of Canadian funds.

In my next life – or when I finally figure out how to replicate hours in a day! - I would love to partner on how to make our efforts far more seamless for globalized research and education. The borders are increasingly irrelevant. I actually had a donor ask me recently if research discoveries made in other countries would be known and/or used here in the US or if countries are proprietary about their findings.

Donation Software and Databases

Today there are many methods available to easily store necessary information on donations, like readily accessible software-based databases. One commonly used type of database is a Contact Resource Manager (CRM), which utilizes a database format to easily organize donors in a variety of different ways. While these systems are for the most part straightforward in their approach, a consultant may be helpful to you in efficiently using the software. For the most part, these CRMs also require a fee, generally paid monthly, to be paid to the software company. They are also generally readily accessible online from many locations. Here is a small list of some good options for CRMs, many of which offer free 30-day trials:

This works as an app on top of the Salesforce Platform mentioned above. This CRM offers a fully customizable system that is easily accessible due to its online nature.

Donor Perfect is a CRM that caters specifically to non-profits. It cites larger-than average increases in fundraising as one of its main benefits.

Pros (thanks to Jean in 2016):

    • Flexibility to add fields as needed
    • Support/help staff is exceptionally friendly and helpful answering questions (we have unlimited support contract, which I recommend highly, at least in the beginning)
    • Development is always working to make improvements and regularly update software based on customer comments on their user forum.


    • Primarily geared towards fundraising, not patient/contact management
    • Not able to create data reports for analysis of complex information. Reports offer very basic information. (although this is an area that they are working to update)
    • Weblink Download forms for use with event registrations can have significant limitations.
    • A lot of manual data entry is needed to maintain the accuracy of the information.

Donor Pro is another non-profit-specific CRM. Donor Pro offers "householding" which tracks the names, e-mails, and other important information of the people in the household. Offers mail merge capability and/or export functionality so a mail merge can be done through Excel.

-We are a small start-up and selected Donorpro – cost is $205/month for unlimited users. Best investment we made!
-We are currently using Donor Pro but had used Sage Fundraising 50 for 13 years before making the change. Both are very good systems, the reason we made the change was that we need to track more extensive “non-donation” information for our Support Services department.

This is Microsoft's version of CRM software. Microsoft offers personal quotes to potential customers of its CRM. They also offer a wide network of partners to help customize their CRM for your needs.

Applying to the Salesforce Foundation can get you access to everything in the Salesforce app network. Many of these apps have special or reduced nonprofit pricing. Nonprofits may be eligible to receive up to 10 licenses as a donation. Here are some experiences using Salesforce on its own or in conjunction with our programs:

  • I served on a task force to assist a large nonprofit, 9 Health Fair- to choose an appropriate database. We evaluated many products, and we eventually settled on SalesForce. However, 9Health Fair is a large organization with an IT specialist and they had budgeted over $100,000 to develop and implement a custom application built on SalesForce. They were shopping among products such as Blackbaud and other top ranked nonprofit databases. They spent well over $10,000 just to hire consultants to help them evaluate database products and assess fit and implementation! I was on the team that selected the consultants. SalesForce is open-source software. An analogy: Compared to a move-in ready house, SalesForce is a lumberyard and a tool box. If you want a house, buy a house. If you want to build a house, the lumberyard is a great place to start, IF you know how to use the tools. SalesForce is a VERY powerful relational database that needs to be tailored to your needs. It’s also useful for VERY simple applications. But if you need a sophisticated application, unless you are somewhat expert at building nonprofit databases, it’s not really a DIY (do it yourself) project.
  • We are using Salesforce Platform and Common Ground (which is changing names to two different products: Convio Luminate CRM and Convio Common Ground d) and have been since 2009. Convio Luminate CRM connects with your Convio Online Marketing (now Luminate Online) systems. Convio Common Ground is a stand-alone product that lives on top of the Salesforce platform and does not connect to Convio Online communications and fundraising systems but has them internally, again driven by what apps give you those functions via Salesforce App Network. All these are technology options that give you capabilities, but all of them require an investment in staff to use them to their full potential – which is VAST. The main advantage over traditional donor databases (DDB) is that:
--It is cloud-based so geographically disbursed staffs make easier use of this than a server-side solution
--It is customizable to reflect your own organization’s work processes rather than being constrained by DDB’s methods you have to adhere to in using the DDB or develop work-arounds to reflect the way you actually work, what information you want to gather about a constituent besides their donor status and transactions with your org.
--It can scale easily as you grow without having to change systems.
--It is not expensive for NPOs but very valuable – for commercial companies using Salesforce, these same 10 free seats would be about $15,000/yr.
--Everything in the APP world has or is developing APPs that plug in to Salesforce. It is mobile-ready, accessible through all devices, and not going anywhere because of the strength of the company’s commercial client base that subsidizes the NPO users.
  • We use Salesforce - they have a free non-profit version and then as you grow you could potentially pay to get it customized for you. Food for thought. Salesforce does have training and support as well. We aren't in LOVE with it - but it runs Fortune 100 companies so we know it can grow and scale.
  • For anyone using Salesforce - we tried it but I really felt like we needed a consultant, asked two people I work with for recommendations and they both hated their consultants, so I gave up on Salesforce.
  • Some have also used Salesforce to follow up with new members at set time inttervals.

You may also benefit from downloading this CRM review article.

Donations By Text

This thread is organized to answer the following question about donations by text 2014:

Inquirer: Can anyone recommend a company that works with smaller charities that want to collect donations via phone text? Everyone that we have found requires a minimum charity income of $500,000.

Responder 1 replied:

This isn't exactly what you asked for, but the EveryLife Foundation features a rare disease charity each month and provides a text number for $10 donations to benefit the charity. They also match the first $1000 raised. You can get more information and a link to an application here:

Online Donation Payments

This thread is organized to answer the following question about online payments for donations asked in 2014:

Inquirer: Does anyone have good experience with other on-line credit card processing companies? We're going to have to make a change or stop accepting on-line donations. We're losing too much of the donation to fees, not good for a 501 c 3 who tries to use each penny wisely.

Responder 1.2 replied:

We are set up with PayPal and I am not aware of related spam or unwanted email. PayPal offers a discounted rate to non-profits.

We are also set up with Stripe so that we can key in donations, but have never needed to use it yet:

Responder 2 replied:

We use Blackbaud. Fees are high, but they do a good job. I’m also interested in hearing if any of you are using text to donate services and what you think. What are fees, etc.?

Responder 3 replied:

We just recently made the jump to BluePay for our credit card processing; it is set up through our database provider, Bloomerang. Bloomerang is a cloud-based donor management system. We can accept donations online through a “widget” (form) that Bloomerang created which is fully integrated into our database upon payment. This has increased efficiency in entering donations by about 75%. Before, it was a manual process with our bookkeeper; we have used PayPal and Network for Good in the past. We still have those available, too. I couldn’t be happier with the service at Bloomerang, and I’m glad to talk you through any of this if you are interested. I realize that you only asked about online payments, but since our payment system is integrated into our donor management software, I wanted to share that as well. This is what it looks like:

Responder 4 replied:

We have seen an increase in online donations since switching to this online form. We have been told that it is best to keep donors on your site, rather than take them to a third party (like PayPal). There is less drop off since there are fewer clicks. “Donors Prefer Giving on a Nonprofit’s Website: Multiple studies have shown that incorporating donation functionality into your website can help facilitate fundraising success. One online fundraising study found that the average nonprofit with a donation page within their website raised five times more than a nonprofit that sent donors to an external, unbranded donation site.”

Responder 4’s response to responder 3: When I attended a class at IUPUI, someone asked about texting to give. The consensus, by far, was to avoid due to heavy administration, large fees, and delayed/contested payments. It might work for very large organizations (Red Cross), but isn’t ideal (as far as I’ve researched) for smaller groups like us. Responder 5: Ditto on PayPal. We get zero complaints about PayPal...including no comments about any unwanted marketing from PayPal. We use it directly and via our online “shopping cart” (part of our website). On the other hand, when a “nonprofit database” such as Blackbaud or similar has a built-in credit card processor, there are few complaints from “customers” there either. I worked as CFO of a large national organization, and we had our own “merchant services” processing through Key Bank, and none of our constituents batted an eye.

Responder 6 replied:

We had nothing but problems with pay pal. High fees and security issues. And zero customer support. We now have processing going through Chase. Lower fees, great in-person support and no hassle.

Inquirer replied:

Appreciate all the responses, keep them coming!

Two members of my Bd. have had bad experiences with PayPal so have nixed that. We don't have any type of data base since we don't solicit. As a small, all volunteer organization we keep tasks to a minimum if possible.

Looked into moving our credit card processing to Chase (where we bank). Had everything in place then they told us we needed to have a full financial audit, at a hefty cost, and we weren't in a position to do that. End of that discussion.

Your comments will be helpful as we discuss this further.

Acknowledging Donations

Writing thank you letters to donors serves three important purposes:

  • Thank you letters acknowledge the donor's contribution.
  • They help cultivate a relationship between the donor and the organization.
  • They substantiate donations for donors who need their contributions documented (usually for tax purposes).

In addition to these thank you letters, some organizations also send out an end-of-the year acknowledgment recognizing donors who contributed over a certain dollar amount. In other cases, such an acknowledgement is only created for donors who give monthly through an electronic transfer.

Over time, organizations can see an increase in the number of donors, which is a great thing! But as you have more donors, you might have to re-evaluate if your process for thanking them is efficient and sustainable. Here’s how some groups determine who will get a more personalized acknowledgment for their donation:

  • We only send out the letters for $25 and up unless it is a child's grandparent or someone very involved in our group.
  • For $250.00 and over donations, donors receive a tax deductible receipt and a handwritten thank you from the foundation. If the donation is made in honor of a family, the donor receives a thank you and the family that the donation was made for receives notification that a donation was made in their name to the foundation. For anything under $250.. their check, PayPal receipt or credit card statement serves a their tax deductible receipt. Same as above, the donor receives a handwritten note from the foundation etc etc etc… A personal note is always nice. I can see that when a foundation gets bigger and bigger this can be quite a job for one person. There are times the foundation receives donations in huge doses and it can be a big job for our one person who hand writes all of the foundation thank you notes.
  • We send a thank you to everyone who donates, regardless of the amount. I’ve noticed that those $10 donors are usually seniors who are really interested in supporting our cause but simply can’t afford to send more. I find that very worthy of a thank you. We do not hand write the acknowledgement – we have a postcard filled out with blanks for the name, date of donation and amount of donation so we simply fill that in manually and mail (in an envelope). We send different ones based on whether they are donating in honor of someone, memory of someone, to our Research Fund or for some other specific cause. We notify the families via e-mail if someone donated in their honor or memory. If it is a larger donation ($1,000 and up) I will type a letter to that donor and be more specific about their donation and what it will accomplish. We used FirstGiving for the first time this year to handle our 5K Run/Walks around the country (online company that handles registration, pledges, etc) and they sent out e-mail thank you messages and tax receipts to all who donated so we did not duplicate those efforts and simply acknowledged the donors in our newsletter.
  • Association of Fundraising Professionals is the group that I usually turn to ascertain “best practices” on questions like this says that donors deserve acknowledgement of their gift (which I take to be the thank you/receipt) within 48 hours of receipt. We can accomplish that for all online givers (thankfully the majority of our donations) but can’t yet with current staffing levels for our “offline” donors that send checks in the mail. We manage about a week to 10 days from receipt. A personal thank you can follow that time frame. Additionally, we have to respond in this same time frame with the honoree families the donor wishes to know of their gift as a large majority of our donors are giving “In Memory of/In Honor of” donations for a child lost (most often) or living with the disease.
Our strategy was/still is to invest in CRM systems and online fundraising systems synced with them that allow us to provide that “minimum” as automatically or automated as possible and to minimize the amount of hours required by staff member to accomplish this recurrent task. That being said, we do respond differently based on the level of donor giving that we outline in an internal Donor Recognition Policy/System. At various levels, a matrix of responses is outlined as a mixture of “automated thank you/receipt only,” hand written thank you from staff, same hand written card from Executive Director, same hand written card from Board Member, hand-written card accompanied by “Constituent Thank you letter” telling donor how much their donations help THEM, phone call from staff or Executive Director or Board Member. Top level would be a personal thank you visit of some kind – invitation to event, personal coffee or lunch, etc. The value of these personal responses at higher levels is high because it also gives staff/Me as ED/Board Members a chance to learn more about this significant donor’s interests and capacity so that we know what types of programs/projects/issues are closest to their heart motivating them to give and prepares us for future solicitations by knowing what dollar levels are reasonable to ask for to help invest in what types of initiatives/solutions they want to see. Bottom line – we couldn’t handle the volume we do responding to donors and honoree families without our CRM systems well-developed.
  • It is important to send the contact info to people where a donation “in honor” or “in memory” has been made so that they are able to thank the donor.

Donor Relationship

One way to build trust and relationship with your donor is to help her understand the process your organization uses to review grant requests. Help her to understand your review process and why you trust those who review grants for you, share their credentials and experiences, and why it's good - even for you - to have some arm's length expert review so we don't let our emotions and enthusiasms for a particular researcher unduly cloud our judgment. Let her know it's not just up to you to make this decision, you have experts helping and guiding you.

And often your grant is not in a vacuum. Her favorite researcher may have other sources of funding so their work with get done with or without your funding, while a second researcher may not be so fortunate. These added perspectives are something you may know but the donor does not - and most researchers are pretty good at not sharing the breadth of their funding to particular donors. Let her know your desire for your ultimate decision is for the best for the whole specific disease community, not just one research project. Be sure to verbalize (but it does not have to be in writing) that the arm's length nature of the donation (other than disease restriction) makes for a better use of funds and is required for tax deductibility per IRS Pub 526.

We often find in our community the families who have had a close contact with a researcher (clinical trial, evaluation, therapy) often "fall in love" with the researcher/clinician, their work and prefer to fund it over other work. We think this is because we want to believe that whatever therapy their loved one had will (and did) work - this is the hope we all need when we have uncertainty and are desperate. This creates a "shared" experience, often reinforced and strengthened by the stress the family was/is under that leads them to trust and want to further invest in that researcher. Although sometimes it's just geographic, something they read, someone's alma mater, a fried/family member's "successful" encounter, etc. I am not sure if any of these are the experience of your donor but perhaps you can get her to resonate with this which might help her to give your space to work your process while not cutting her out of the confidence and trust you want to build with her.

We also tell families, donors, industry, and researchers that we like to "bet on all the ponies" and we hope they all win. Then we have more learning, more choices, more sharing/collaborating, and perhaps in the future more effective combined therapies, etc.

From a pure practical perspective, I might suggest that even if you explain all of this to your donor and she agrees, it might be prudent to very quickly create her acknowledgement letter (which hopefully is pretty much of a template anyhow), personalize it to acknowledge the size of the gift, and spell out that the donor received nothing back (boiler plate), and then add a sentence that the donation will be combined with other funds focused on disease ABC (her request). Then generically state that projects are funded based on the expert grant review committee's recommendation. Also say you will keep her updated on the progress of all of the organization's research (not just one project - don't connect the dots to make the project "hers"). If she balks when she receives the letter and asks for more control you will know quickly and then can decide if you are better off to just give her gift back or if can continue to educate her to give you the space you need.

No amount of money (IMHO) is worth alienating a single donor who can communicate her frustration with your other donors and supporters. Do not get attached to the money ... if she walks from you, you still want her to donate to the specific disease research. If this donor is so hard set on funding a particular project, she will surely find a charity that is more concerned about the size of the numbers on their form 990 than their integrity and IRS compliance (or she will form her own 501(c)(3). In the grand scheme of things the funds still end up in your disease community so that is a good thing, even if the project is not your review committee's first choice for funding or it's not the most efficient project.

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