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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.
| + | The following is the overview your DAO would have to take to successfully setup and launch a White Label Package connected through the PEER portal |
| | + | [[File:dao-manual.png|200px|thumb|400px|right|DAO-Flowchart]] |
| | + | ==Initial Consultation with Genetic Alliance== |
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| − | ==Obtaining Donations== | + | ===Expectations=== |
| − | :Mary Ann Wilson, Administrative Director
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| − | :Neurofibromatosis, Inc.
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| − | "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.
| + | ===PEER Portal Overview=== |
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| − | 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.
| + | ===Timeline=== |
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| − | 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.
| + | To be updated... |
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| − | 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!"
| + | ==Pre-Outreach Efforts== |
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| | + | To be updated... |
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| − | 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.
| + | ==PEER Portal Design Decisions== |
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| | + | To be updated... |
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| − | The following is one organization's view on this:
| + | ===Portal Content & User Interface(UI)=== |
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| − | "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.
| + | To be updated... |
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| − | 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.”
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| − | ==International Donations==
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| − | 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.
| + | ===Video & Guides Development=== |
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| − | 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:
| + | To be updated... |
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| − | *Eleni Z. Tsigas
| + | ==Survey Questions & Development== |
| − | Executive Director
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| − | Preeclampsia Foundation
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| − | "...wondering if there might be some value in combining forces to set up an
| + | To be updated... |
| − | office in some of our key countries that would serve as a 'registered agent'
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| − | co-op, of sorts. It would serve as the physical address and a local bank
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| − | account could be set up. We would probably need to contract with a local
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| − | bookkeeper (for a few hours a week at most, I might think) that would be
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| − | responsible for taking in donations, allocating them to their respective
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| − | organizations and then either paying expenses when the money is spent in
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| − | country or if its allowed, to forward the money to the parent organization."
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| | + | ===Survey Question Formatting=== |
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| − | *Lindsay B. Groff, MBA
| + | To be updated... |
| − | Executive Director
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| − | Barth Syndrome Foundation
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| − | 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.
| + | ===Using the PEER Questions Manager=== |
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| | + | To be updated... |
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| − | *Marie-Claude BOITEUX
| + | ===Editing Current Surveys=== |
| − | CUTIS LAXA INTERNATIONALE
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| − | 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
| + | To be updated... |
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| − | 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
| + | ===Setting Up User Support Team=== |
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| − | Please see our article on [[International Offices|international offices]] for more information.
| + | To be updated... |
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| − | ==Donation Software and Databases== | + | ==IRB Approval== |
| − | 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:
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| − | *[http://commonground.convio.com/?elqPURLPage=1228 Convio Common Ground CRM]
| + | To be updated... |
| − | 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.
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| − | *[http://www.donorperfect.com/ Donor Perfect]
| + | ==Selected Audience Testing== |
| − | 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.
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| − | *[http://www.towercare.com/nonprofit-fundraising/nonprofit-software-satisfaction Donor Pro]
| + | To be updated... |
| − | 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.
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| − | *[http://www.microsoft.com/en-us/dynamics/crm.aspx Microsoft Dynamics CRM]
| + | ==Launch== |
| − | 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.
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| − | *[http://www.salesforcefoundation.org/ Sales Force Foundation]
| + | To be updated... |
| − | 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.
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| − | Here are some experiences using Salesforce on its own or in conjunction with our programs:
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| − | * I served on a task force to assist a large nonprofit, [http://9healthfair.org 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.
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| − | * 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:
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| − | 1.It is cloud-based so geographically disbursed staffs make easier use of this than a server-side solution
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| − | 2. 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.
| + | ==Organizational Full Outreach and Community Engagement== |
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| − | 3. It can scale easily as you grow without having to change systems.
| + | To be updated... |
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| − | 4. 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.
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| − | 5. 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.
| + | ==Research & Data== |
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| − | You may also benefit from downloading this CRM review [https://www.blackbaud.com/online-marketing/website-management.aspx article].
| + | To be updated... |
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| − | If you are just starting up and trying to choose a donor management system, here are some comments on different organizations' experiences with different systems in relation to their size and needs:
| + | ==Additional Surveys & Updates== |
| − | *We are a small start-up and selected Donorpro – cost is $205/month for unlimited users. Best investment we made!
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| − | *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.
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| − | ==Acknowledging Donations==
| + | To be updated... |
| − | Writing thank you letters to donors serves three important purposes:
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| − | *Thank you letters acknowledge the donor's contribution.
| + | ==Customer Support== |
| − | *They help cultivate a relationship between the donor and the organization.
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| − | *They substantiate donations for donors who need their contributions documented (usually for tax purposes).
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| − | 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.
| + | To be updated... |
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| − | 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:
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| − | *We only send out the letters for $25 and up unless it is a child's grandparent or someone very involved in our group.
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| − | *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.
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| − | *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.
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| − | *[http://www.afpnet.org/ 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.
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| − | :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.
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| − | *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.
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| − | ==Donor Relationship==
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| − | 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.
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| − | 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.
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| − | 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.
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| − | 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.
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| − | 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.
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| − | 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 501c3). 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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| − | ==Internal Links==
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| − | *[[Becoming the Organization You Imagine]]
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| − | *[[Building a Website]]
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| − | *[[Charity Rating Listings]]
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| − | *[[Conference Call Services]]
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| − | *[[Events]]
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| − | *[[Getting Grants]]
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| − | *[[Harnessing the Resources That Are Hard to Measure]]
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| − | *[[Helping Your Membership Help Your Group]]
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| − | *[[How to Obtain Donated Office Space]]
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| − | *[[Choosing an Internet Service Provider|Internet Service Provider]]
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| − | *[[Maintaining Computer Files]]
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| − | *[[Maintaining Your Membership|Maintaining Membership]]
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| − | *[[Meet Your Neighbors & Organizations]]
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| − | *[[Member Dues]]
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| − | *[[People and Roles]]
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| − | *[[Recruiting]]
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| − | **[[Publicity and General Media]]
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| − | **[[Media Tips]]
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| − | **[[Recruiting Celebrities]]
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| − | **[[Health care Providers and Specialists]]
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| − | **[[Attending Professionals' Annual Meetings]]
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| − | **[[Internet and Web Resources]]
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| − | **[[Using Search Tools to Get Found]]
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| − | *[[Social Networking]]
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| − | *[[Taking Credit Cards on the Web]]
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