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Email: [email protected] CONTENTS

5 Crowdfunding: The 59 What’s a Great Picture? Big Picture 63 What About Perks 10 Pre-Game Plan and Gifts

What to do before the 67 Launch Day campaign begins? What to do the first 24 14 Messaging is Key to hours? the Campaign 73 Running the Campaign Cultivate a Community Media Telling Your Story Updates and 22 Team: Recruit Your Engagement Team and Lock in Timeline Beginning Donations Offline Fundraising Share Connections Efforts to Create Your Advice and Feedback Peripheral Team 84 The Final Push to the 31 Write an Awesome Campaign Goal Crowdfunding Email 89 Appendix 37 Phone Calls are Important 92 Acknowledgements 40 Goal Setting for Fundraising 95 About the author

44 How to Make a Great Crowdfunding Video

Crowdfunding: The Big Picture

Crowdfunding Best Practices 5 CROWDFUNDING: THE BIG PICTURE What is crowdfunding? As the larger dollar donations, usually name suggests, crowdfunding from a few philanthropic involves asking a crowd of individuals or investors. people to donate money to an Crowdfunding individual project or campaign. allows for small Crowdfunding is another type of donations fundraising, but this fundraising is from many done online. individuals anywhere Crowdfunding works because a around the large number of people donate world. what are usually smaller amounts of money to a project or venture. Smaller This is the cause behind the amounts campaign. Crowdfunding is by many. used to raise money for a wide The common range of projects from businesses ability of many to films to personal medical to donate small expenses. There are different amounts of money kinds of projects and campaigns, to a cause, coupled with but we are going to focus on the power of connectivity crowdfunding for medical via the Internet means that campaigns. anyone anywhere can support projects around the world. It Crowdfunding has created a also means that anyone can paradigm shift in fundraising. share the information about Traditional fundraising involved the campaign with their own

6 Crowdfunding Best Practices network. Crowdfunding provides versus “Keep It All.” In the first entrepreneurs, small business model, you must reach the goal owners, and individuals an amount you set in order to keep alternate funding mechanism at a the money raised. In the second time when the traditional sources model, you keep everything you of funding have become more raised, minus any fees, even if you difficult to obtain. do not reach your goal.

Social media. Crowdfunding is In this book, we will evaluate not a new concept, but over the some of the most successful last few years, it has become crowdfunding campaigns and more widely used and publicized share advice from the experts through the media. What and the founders of the most usually starts out as a small circle popular crowdfunding platforms. of friends and family knowing Our focus is crowdfunding for about a fundraising cause can personal medical causes and quickly spread to thousands of scientific research. Their insights people using the power of social are synthesized into this guide of media. The biggest benefit of a best practices to show you how crowdfunding campaign is that to run a successful campaign. a lot of money can be raised in a short amount of time.

There are many choices when it comes to crowdfunding platforms with more than 500 different sites as options. An important difference to consider is the two models, “All or Nothing”

Crowdfunding Best Practices 7 WHAT YOU WILL LEARN: Crowdfunding: The Basics of securing 30% funding on Crowdfunding involves asking a the start date. crowd of people online to donate • Create your media: high- money to an individual project quality photos, a video, and or campaign. It works because a written materials will be large number of people donate essential. what are usually smaller amounts During the Campaign of money to a project or venture. Crowdfunding is very effective for • Hold a launch party on Day medical campaigns. One. • Provide regular, detailed Before the Campaign Begins updates. • Set a clear, realistic, • Use social media for the measurable goal and campaign every day. timeframe. • Engage in offline fundraising • Engage in detailed planning and link it to the online work. before your start date. • Contact the media. • Create your message, identify • Elicit feedback and act on it. your target community, recruit your team, and figure out how • Make a strong final push at the to tell your story. end of the campaign. • Strategize about how to After the Campaign create energy and group • Thank your donors and momentum to prompt more provide them with anything activity. you promised to them. • Arrange initial commitments • Revise for next goal, as from your circles with the goal needed.

8 Crowdfunding Best Practices Planning Crowdfunding Campaigns Experts agree that successful • Why should people fund this campaigns boil down to knowing project? Explain what will the right problem, the right happen if they fund you, what approach, the right audience, and will you be able to do, and the right timing. If you mix these what the broader impact may elements together in the correct be. way, you will be successful; this is why planning is essential. Think about these critically to ensure that you When planning remember to ask make a connection and answer these questions: with your • How will I present this case? audience. Consider message, branding, and visual factors here. • Why is this problem important? Explain why people should care about it and what effect funding will have. • Why is this timing important? Explain why you need funding at this point: mention the need for testing, an upcoming procedure, or a roadblock to finding cures or medicine that exist.

Crowdfunding Best Practices 9 Pre-Game Plan

10 Crowdfunding Best Practices PRE-GAME PLAN So, how will you create this momentum and raise funds What to do before the campaign before the campaign even begins? begins? The secret is to get Because crowdfunding is so commitments early from your different from other kinds inner circle of supporters. of fundraising, the key to a successful campaign is planning. Crowdfunding uses the core Focusing a cause online by technology of the Internet and crowdfunding can create a existing communities of people. momentum that relies on the Crowdfunding is just a power of the group to encourage technology that enables reach. others to donate to a campaign This means that the biggest or cause. determinant of a successful campaign is how you present One of the best indicators of a your case. successful campaign is when it raises a lot of money before the start of the campaign. When the crowd sees a campaign that quickly raised funds, especially on the launch day, there is an energy and momentum that occurs. Often the crowd follows and donates more to the campaign. This is thanks to the energy and momentum of the group which prompts more activity.

Crowdfunding Best Practices 11 “The game is won or lost Sometimes people don’t really before you set foot on know what to think the first the field. There are two time they hear about a important aspects to the campaign. However campaign: content and when they see distribution.” people talking —Ethan Austin, about a co-founder campaign and GiveForward donating to it, they will As GiveForward, co-founder do the same. Ethan Austin explains with What are crowdfunding, “The game is won the most or lost before you set foot on the important field. The two most important lessons we aspects to any crowdfunding can take away campaign are content and from a successful distribution.” Content tells the campaign? story. You have to paint the Ethan Austin said, picture of what you are going “Personalization, through for your audience. promotion and persistence Successful campaigns carefully are the keys.” plan how the cause should be presented. Distribution means how the campaign is marketed.

12 Crowdfunding Best Practices Case Study: Successful Planning

One example of a very successful Kickstarter campaign was the Coolest Cooler that raised $13.3 million in 52 days. They had 2 campaigns. In the first launch, only $100,000 was raised. Although this is a significant amount, it was not the goal they had hoped to reach.

In their second campaign, what changed that made them so successful? The content was basically the same for the cooler, so that did not change. However, they built up $100,000 dollars of commitment on Kickstarter in the first campaign for the cooler. They assembled a crowd of people that knew about it and supported it. When they launched it a second time, they had about 1000 fans of the product, so they seeded it. The first time they were outsiders, the second time they had a tribe of followers.

Crowdfunding Best Practices 13 Messaging is Key to the Campaign

14 Crowdfunding Best Practices Create your message and identify your target community During the Campaign • Tailor your message for momentum. Strategize about how to create energy and group momentum to prompt more activity; experts agree that successful crowdfunding campaigns boil down to knowing the right problem, the right approach, the right audience, and timing all of these factors appropriately. • Research the community. Find out which groups of people are most likely to support you.

Only well thought out, planned, and emotionally moving messages and campaigns take off, and your target audience heavily influences what message will be effective.

Crowdfunding Best Practices 15 MESSAGING IS KEY TO THE CAMPAIGN Messaging is the most important Simply explain the problem. Rob part of your campaign. Wu, founder of the crowdfunding Crowdfunding expert Devin site CauseVox recommends Thorpe recommends that people explaining the problem or need with health problems plan their that the money raised will address campaigns starting about in simple terms. Do it clearly and 90 days before the in one or two sentences. Describe campaign launch what the campaign is about, and date. First, tell potential donors how their make sure efforts will make an impact. crowdfunding will work for Be transparent. It’s important to you. be transparent and believable. People respond to emotion, so There has to the campaign should state the be a strong need earnestly (so potential story. It is donors believe in it) and visually important (so they can better understand to craft the how difficult the issue is). Finally, story so that tell them how they can help. Give the audience can them a call to action and let them readily understand know when the campaign starts the problem and and ends. know why there is a great need for them to support the campaign.

16 Crowdfunding Best Practices Understand your target audience. Think about what influences them and speak their language in your messaging. Tailor the message to highlight the benefits supporting the campaign will have to that particular audience. With medical campaigns in particular, raising money for just one clinical trial may lead to major developments in another disease state or illness. Remind readers of this key benefit.

Crowdfunding Best Practices 17 MESSAGING CHECKLIST: Find organizations and groups that have a connection to the cause. Personalize the message. Messaging should answer these questions: Who am I? Why am I raising money? Why do I need help? How will the money be spent?

18 Crowdfunding Best Practices Cultivate a Community Find groups of people that would want to help you. They could be associations, organizations involved in the illness or disease state, or church groups. Find groups of people that have a connection to the cause.

Remember to ask. It’s important to clearly ask for what you want, and to make the amount relatable. Personalize it so that the donor knows exactly where their $50 (or other amount) of money is going. Make the narrative describing the campaign and the person in need very clear.

For example, explain the illness that “Emily” has and what her experience has been like so far. Then encourage them to donate, reminding them specifically how that amount will help Emily.

Crowdfunding Best Practices 19 Telling Your Story Understand that people have a of this child is like. You want your short attention span and create audience to walk in your shoes your message with that in mind. and think, “Imagine if that hit me.” When telling your campaign story, make sure you answer Keep these reasons at the these questions: Who am I? Why forefront when you plan the am I raising money? Why do I messaging of your campaign. If need help? How will the money your story is a good candidate be spent? Take a step back and for crowdfunding, next look at consider what would drive you platforms. In the first 30 days to part with your money for of your planning period, think someone else’s campaign page. about all aspects of the campaign Then craft your message. including media outreach. Gather high quality photos. The People can only digest small remaining 60 days leading up to amounts of information. Do not the campaign launch, prepare use a huge block of text. Separate and gather a team. If you have it into smaller sections that are extended family and friends easy to read and understand. Use that are willing to work with you headings. and are reliable, put a big team together. Make people feel empathy. If a family is trying to raise money Why do people donate? When for a sick child who has a rare building your campaign, think disease, explain how this illness about the many reasons that affects their normal, everyday might prompt others to donate activities. Tell them what the life to it. Here are some reasons to

20 Crowdfunding Best Practices consider. Maybe they can relate to the situation from their own personal experiences. Perhaps, they have a connection, a family member or friend who has a similar issue. If they know someone with the same problem, they can feel more connected to your cause and more likely to support it. They may just want to make a positive difference in someone else’s life by donating. Or they may want to donate so they can be recognized for their donation publicly on the page or receive a thank you note or gift.

Crowdfunding Best Practices 21 Team: Recruit Your Team and Lock in Beginning Donations

22 Crowdfunding Best Practices TEAM: RECRUIT YOUR TEAM AND LOCK IN BEGINNING DONATIONS • Create your “A” team. Identify • Play the field. Identify your inner circle of family and your outer circle friends and choose people and potential who are reliable. Ensure you new contacts. have complementary skill sets Never stop represented on the team. reaching out • Start out strong. Arrange or making new initial commitments from connections. your circles with the goal of securing 30% funding on the You can’t do it start date. Campaigns that alone! Reach out start out with 30% of their and take the help goal met are much more and talent that you likely to succeed and seem can access. appealing to new donors.

Crowdfunding Best Practices 23 How to Assemble Your Team How to Coach Your They understand crowdfunding. Crowdfunding Team Have planning meetings with Build a team. Crowdfunding your team and discuss the works because people working campaign as a group. First, together can make things happen. explain crowdfunding so Be sure you have the right team that your team has an for your crowdfunding campaign. understanding of Successful crowdfunding the basics. This campaigns really depend on the ensures their commitment of the team. feedback and brainstorming Who Are They? is more useful. Identify your core team. Successful crowdfunding They know campaigns have a committed the story. team. Before the beginning of Let your the campaign, if possible, get at team work on least five close friends or family messaging; members together to help. These they know should be people that you know the story. Start you can count on to help you get writing down the something done. They will stick compelling aspects with the campaign no matter of the story and what. This is your core team. Talk consider asking trusted as a group. friends and family for feedback as you go.

24 Crowdfunding Best Practices Share Connections to Create Your Peripheral Team When you gather a team, you and encourage them to share the may gain a potentially huge information with their friends. mailing list of people. Many times Ask those five team members when people are in a difficult what ideas they have and if they situation, others want to help but know more contacts. Think and don’t know how. Let your network discuss how you are going to know that just being involved manage this as a group. Have and spreading the word is each person think about their something they can do contacts and connections. to make a difference. What Are Their Skills? Team Get your members will have different communities strengths based on their skills engaged before and contacts. Play to their the campaign. strengths. One person may have Tell them, “This media contacts they can reach is what we are out to. Another may be a great doing, do you communicator and want to be want to help us? responsible for answering all Will you spread the campaign emails. Another the word?” Prewire may have experience with offline people ahead of fundraisers like chairing benefits, time. Let them know organizing a car wash to raise you are planning a money or connecting with the campaign. Tell people when high school PTA. Make use of you’re launching the campaign your group talent and strengths.

Crowdfunding Best Practices 25 Be creative with what they have. Raise funds as individuals and Think creatively about solving the team members. Crowdfunding problem as a group. For example, is a testament to the power a family from Kentucky has a of friend to friend fundraising. child with a rare cancer. They Encourage everyone on the team have a limited network of family to get involved with their own and friends, but they gathered a list to secure donations. The local group of people at the gym team should be willing to work who Zumba to raise money for together on all aspects of the the child. Publicize any campaign campaign including creating a efforts in the community and on video to support the campaign your fundraising page. Get local that they will share with their merchants involved. Let them connections. They need to be know if it is a tax deduction. committed to reaching the goal. Name recognition and being They must create and follow the listed as a contributor to the plan together. The campaign effort is important to many has to reach and engage people, donors. and this is most possible with a concerted group effort. They communicate. Your team Successful campaigns raise most has a huge, collective mailing of their money from first- and list of people. Even the most second-degree circles before they peripheral members can help get bigger. by spreading the word. Your team must actively promote Find your community experts. the campaign. Also, encourage Assign one team member to everyone on the team to get search for a smaller or startup involved with their own list to PR (public relations) company secure donations. in your area and try to get them

26 Crowdfunding Best Practices involved. It will be easier for them used for every benefit and party. to gain traction and visibility. They used the picture on all the The benefits to them are that social media sites to talk about they look good for supporting an the upcoming events, parties and important cause, and that they the campaign. They got several can use a successful campaign businesses in the community as an example of their work. Find involved in the campaign to other local “experts” who can raise money. The team also had help you, from media contacts one person with connections who will publicize the event to to media. Thanks to all of these artists and business owners who connections, the campaign’s are interested and may donate parties and benefits were in the goods and services. news, on the radio, and on TV. At the parties, they had artists They fit in the team’s and raffles, and one party raised organization. Think and discuss $25,000. One of Jamil’s hobbies how you are going to manage is surfing and connecting with this as a group. Have each that community really helped person maneuver their network support him and his campaign and connections appropriately efforts. to fit the plan. Jamil Newirth’s campaign team created a poster with his picture on it that they

Crowdfunding Best Practices 27 Case Study: Successful Team

Jamil Newirth just finished law school and planned to study for the bar exam all summer before he started his new job in August. Excited about his future, he planned to spend every day that summer in the library preparing for his test. Suddenly, he began having excruciating headaches that sent him to the emergency room. After a battery of tests, he learned that his headaches were being caused from stage 4 Glioblastoma Multiforme, a cancerous, fast growing brain tumor with a high After the initial shock of the rate of recurrence, close to 100%. diagnosis, Jamil and his very close knit group of friends In addition to this news, when he from his community in Hawaii graduated law school in June, he came together to help him. let his insurance lapse for the two They formed a team to help months in the summer. He had a him raise money. They started job starting in August and figured a crowdfunding campaign on he would be at the library studying Giveforward. They made a poster every day. Young and seemingly with the picture on it and it went healthy at the time, he thought if all over social media. Their efforts he got a cold, he would just go to were online and offline. They the clinic. began having parties to raise

28 Crowdfunding Best Practices Case Study: Successful Team money for the cause. The poster went to all the parties. People posted on Instagram about the parties. The team reached out to several businesses including one that put the poster on t-shirts for men and women. Someone in the group was starting a small PR, public relations, firm and made extraordinary efforts to reach the media. The poster was used for press releases too. Jamil’s campaign on GiveForward raised $144,390.

Crowdfunding Best Practices 29 Team Checklist: Gather close family and friends. Brainstorm and plan. Assign tasks- online and offline. Share connections. Publicize and promote on all team member’s social media sites.

30 Crowdfunding Best Practices Write an Awesome Crowdfunding Email

Crowdfunding Best Practices 31 WRITE AN AWESOME CROWDFUNDING EMAIL How to Write a Compelling Email have those funds raised. Some Time it right. You want to know people may be skeptical of that you have raised the first third online fundraising efforts; of your fundraising goal before psychologically they will the campaign begins. The key feel more comfortable to this is to get the commitment to see that others before the campaign begins from are donating to your network. Emailing your this important network before the campaign cause. On your begins asking for their support launch day, is the best way to get your if you have community engaged. a significant amount in donations “When you compare from all of crowdfunding to fundraising your work offline, you see that giving before the day is not a rational thing. At of the launch, it end of the day, you are signals that you appealing to emotions. have a great cause There is an important that people should human element.” support and that the —Devin Thorpe cause is legitimate. One of the most important aspects to the campaign is to email potential On the day of the launch, you donors. The whole campaign want everyone to see that you hinges on your messaging before

32 Crowdfunding Best Practices you launch the campaign. child.” Write an email that tugs at the heartstrings and signals How many people should send that you really care about the emails in a campaign? Assemble campaign. Talk about the child your email team. Crowdfunding or individual the campaign is expert Devin Thorpe for, their family, their illness and recommends that 10 people the imminent need to find some on your team should send out answers. emails to their networks. Give important information. Crafting the message. Talk about the potential of the What should the email say? Each research that hopefully can message should be personalized, change lives. so use your contacts’ names in the first line along with Don’t forget to ask. Finally, something that shows your tell them about the cause and connection to the recipient of ask them to donate when your the email. This way the recipient campaign begins. Try to get a realizes that the message is commitment for them to support intended for them specifically the campaign by donating on and isn’t a mass mailing. the launch day of the campaign. Personalized emails are a lot of work, but they offer a higher probability of success.

Tell the story. In the message itself, continue this personal approach: “I wanted to tell you about a friend of mine and their

Crowdfunding Best Practices 33 that a marketing department Crowdfunding expert, would write. You can craft these personalized emails into Devin Thorpe a template for reaching out to recommends following hundreds of other people. this exercise to write the email: Who Gets The Message? How to Write Your Message First wave. Send Dear Mom. Sit down and write out an email to an email to your mother about all the people why she should give her hard in you close earned and saved money to circle. They help this family. You can’t use need to marketing language with your immediately mother. She will know if you are realize this exaggerating. Remember it’s is not a mass your mother, so make it sincere. email to every one of your Best Friend. Write a similar email contacts. This to your best friend and tell her personalization why she should support this will greatly increase family. your chances for donations. Using this Craft the Final Message. Now, approach, you can get a much you have ideal, authentic higher level of participation to language for your message. This reach your campaign goal. is very different than an email

34 Crowdfunding Best Practices Second wave. Your core team sends out an email to all the people in their close circles.

Stay organized. Keep a log of the emails you have sent. Write down every commitment to support your campaign when it begins. For those that commit to a donation, send another email out on the launch day of the campaign. This follow up message will first remind them of the mission of the campaign, then thank them for pledging to support this cause and finally end with the exact link to the campaign’s donation page, not just the homepage of the crowdfunding website. Potential donors are busy, and they may be viewing the email from smart phones. They will lose interest if it is not easy, and if they have to go through multiple steps to get to the correct page.

Crowdfunding Best Practices 35 Email Checklist: Personalize the emails. Giving is not rational, so make a heartfelt appeal. Write an email to convince your mother to support the campaign. Write another email telling your best friend about your campaign. Put links to the exact fundraising page so it is easy to connect.

36 Crowdfunding Best Practices Phone Calls are Important

Crowdfunding Best Practices 37 Phone Calls are Important Reach out to your Pull on people’s Phone Calls top 20. In addition emotional heartstrings. • Personally to sending a very Tell them why you call the top personalized email need the money, not 20-30 people before the campaign just how much you before the campaign begins, Devin Thorpe need. If you need begins. recommends that you money for an illness, • Make one call the top 20 to 30 explain, “I need the call per day people on your list money for a medical the month personally in the 30 procedure,” and then prior so it’s days before the start talk about what it is. In manageable. date. Explain what you simple terms tell them • Tell them why are going to do with how you will use the it’s important the campaign and let money. to reach your goal. them know when it is scheduled to begin. Make it one call Ask them to help. Let per day so it is not them know it’s okay if overwhelming for you. they can’t donate, but Call people you know still tell them what you would do anything are doing. They can they could to help still help by telling their you. Once you get a network about the commitment, tell them campaign. you will send them the

38 Crowdfunding Best Practices link the day the campaign starts, so they can make their donation.

Luke Miner, co-founder of YouCaring, encourages people to share the personal aspects of the campaign. He explains that people that are successful in sales connect with others. Similarly, in crowdfunding you have only a few minutes to connect with someone and have them empathize with the situation. It is this connection that prompts people to donate to the cause.

Connection rings. Everyone has multiple rings of connections. First is the ring of your inner circle of family and friends, followed by the next circle of your co-workers, associations, and organizations. YouCaring recommends reaching out to people in all of your rings of connections.

Crowdfunding Best Practices 39 Goal Setting for Fundraising

40 Crowdfunding Best Practices Goal Setting for Fundraising Set clear, realistic, measureable Urgency toward the end. For fundraising goals and timeframe. research based projects, you Know what amount you need can set incremental goals. And to take care of your costs. You while different campaigns can have a “reach” goal too, but have different needs, people often like to fund projects crowdfunding experts that demonstrate success and agree that you need confidence. On the web page, a time limit. This state the goal, along with the creates urgency amount and percentage raised to and moves people date. You can also set a new goal to act and donate. after the first is attained. When a campaign has statistics showing How much do I the initial goal was reached and need? Be sure to exceeded, more donors will have explain the costs of the confidence to add funds to an the elements of the already successful project. campaign and show where the money is going. When do I need the funding? Let donors know how their Early goal setting is important. money will be used, with specific You do not want to do half a examples if you can. This detail campaign. It allows you to plan makes it easier for people to and know that you have enough understand and empathize. This money to cover all of your costs. in turn makes them more likely to You must also decide on a goal in donate to the campaign. order to evaluate which campaign type of “All or Nothing” or “Keep it All” is best for your cause.

Crowdfunding Best Practices 41 When Zsuzsanna Darvai wrote answered by framing the need in about the campaign for her son, small increments: “I will tell my RG patient Balazs, she explained: audience that if I get 750 people “The only goal is the cost of to each give me $10, I can do it.” sequencing.” She wanted to make sure she explained that How to Measure the Impact insurance would not cover this. Talk about the impact. Let the She also told everyone that audience of potential donors Balazs was lucky enough to be know that their gift of money included in the study to try to can change the child’s life and finally find a diagnosis for him. In maybe have an even bigger this way Zsusanna explained that impact. Remind them that if her donors were helping to find the money raised is for a child’s a diagnosis, “Your help to raise clinical trial and helps that child, the money to find answers for their donation could also impact him.” many other children or people waiting for answers. Jeneva Stone started a campaign to raise money for What’s in the future? It could the costs of DNA sequencing of potentially be a solution, a her son; her goal was to find a new treatment. This would be diagnosis for her son who had rewarding to donors knowing an undiagnosed rare disease. A that they helped fund and make reporter asked her, “We are in a difference in many lives, and a recession, how do you think that they have contributed to you are going to accomplish general scientific knowledge. your fundraising goal?” Jeneva

42 Crowdfunding Best Practices Goals Checklist: Set realistic goals. Frame it in small increments. Explain how to reach your goal. Set a time limit for the end of the campaign. Create urgency. Talk about the impact.

Crowdfunding Best Practices 43 How to Make a Great Crowdfunding Video

44 Crowdfunding Best Practices How to Make a Great Crowdfunding Video What Does The Video Say? medical campaign is for a child, A Personal Story. If the campaign and the child is in the position to is for a child’s medical costs, a actually speak and explain their video of the mom, dad or a close situation, that may also prompt friend telling the story of the deep empathy in others. child’s illness can be impactful. If someone outside the immediate Be creative. You’re not family is running the campaign, educating a classroom this outside voice can help about the disease; establish more credibility. You are you’re making creating an immediate, personal connections with endorsement. Crowdfunding people. Share the expert Devin Thorpe explains, details. Explain the video voice should send the the specifics of message that “I personally know the disease. The their situation, and I know they video must provide need help.” a stark, emotional portrait of the Focus on the individual. After problem. you organize your team, create a video with the sick person as a Be sincere. You do not primary focus of the video. Ideally have to have a professional you will show a brief yet poignant video. However, in order to make “snapshot” of the way this child’s an effective video, you do have life is—one that shows the viewer to build trust. A video helps you the problem in a compelling way reach and connect emotionally so they will want to help. If the with more people than does

Crowdfunding Best Practices 45 a simple webpage. Potential term goal to longer term goals, donors can read about someone’s and make your video work not problem, but if they can also see alone, but as part of a series. and hear how it is affecting them, they are more likely to connect Technical Issues and feel empathy. It does not You don’t need a professional have to be a high tech video, but video. An effective video builds it should show the problem or trust and helps you reach and need and how you will solve it connect emotionally with people. with their help. It does not have to be a high tech video, but it should show the “Getting a problem or need and how you will crowdfunding video to solve it with their help. go viral is one of the best things that can The video should be no longer happen to a campaign.” than three minutes. In the first 10 seconds-describe what the Inspire donors. Offer a way to campaign is and why funding it is help: “But there is hope.” Then tell unique. If putting a link to a video them why. In this way the video in an email, always say in the and campaign both connect with email the length of the video and viewers and offer an actionable state that it is a video. step they can take- something they can do with this new found You may be able to get connection. professional help. Although your video does not have to be Think ahead. Plan to eventually professionally made, you may transition from the initial short well be able to find a professional

46 Crowdfunding Best Practices videographer to help your Once you have media contacts, campaign. Even if you can’t get give those updates. Share someone to make the video, they something on social media every might be willing to listen to your day. story and tell you how you should go about making it. Aim for viral success. Make sure it’s emotionally rich and focused Use the right language. Don’t ask on the person and issue at stake. people to donate at first. Ask them for three minutes of their time to watch and share the video. They need to know it’s short and worth the time. After they watch, they can decide whether or not to donate (and if it’s well-made, they usually will).

Make it easy. Show the direct link to your campaign. This keeps it personal, and easy.

Focus on the bigger picture. Align yourself with the larger crowd effort. This campaign is not just us, it’s all the donors in all the countries.

Use social media. Create a hashtag for everything you do.

Crowdfunding Best Practices 47 Case Study: Viral Video

One of the most successful rare disease crowdfunding campaigns is “Saving Eliza”, launched in 2014. The case study tells the story of how Eliza’s dad, Glenn O’Neill, reached out to create a viral video and successfully raised over $1.8 million in less than 8 months. The funding is for research and a clinical trial that he hopes will stop Sanfilippo Syndrome and save his daughter Eliza’s life, as well as many other children. their ability to talk, and then walk The Background Story and feed themselves. Children with In July of 2013, Glenn and Cara Sanfilippo Syndrome are missing O’Neill experienced every parent’s a necessary enzyme. Without it, worst nightmare; doctors informed toxic material builds up in their them their 3 year old daughter brain and throughout their bodies. Eliza had Sanfilippo Syndrome- Many die before they become Type A. This rare, fatal disorder teenagers. affects about 1 in 70,000 children born. It is rapidly degenerative The O’Neill’s were crushed. and by 6 years of age, most Glenn’s wife Cara, a pediatrician, children with this syndrome have began calling researchers around significant brain damage affecting

48 Crowdfunding Best Practices the world. One call led them funds. We were told the funding to a hospital researcher, Dr. to get the trial underway would Haiyan Fu. “We found HOPE, still be several million dollars. We nearly immediately,” said Glenn. needed to do our part and set out Dr. Fu told them she had been to try to make a major impact and working many years on a gene quickly, with Eliza slipping away therapy treatment that was near more every passing day.” clinical trial phase for Sanfilippo Syndrome, at Nationwide So the O’Neill’s went to work. Children’s Hospital in Columbus, The first thing they did was create Ohio. “This research has shown the Cure Sanfilippo Foundation, a to stop the disease in mouse 501(c) 3 nonprofit (www.CureSFF. studies.” Glenn said. “It may org). The foundation was set seem strange to say that you up to fund the research, and are fortunate after your child is focused first on this clinical trial diagnosed with a disease like this, for a hopeful cure or treatment but we were fortunate that this options for children. With no research was near the stage of paid employees and no personal moving from animals to humans.” expenses, they prioritized on Glenn says this is thanks to hard raising funds and awareness. “We work of other Foundations who went at it from the standpoint funded research for more than where we decided to open up our 15 years to bring us to this point. lives; tell our very personal story, “We also found out that often in for the larger cause.” Glenn said. rare disease it is difficult to get They held fundraisers, parties, and funding from big pharma or the 5K runs, everything they could government. It’s been mostly think of to raise money. “We parent foundations raising these had so much early local support

Crowdfunding Best Practices 49 where we lived and from our away. How could we visually hometowns. Our circles began represent this and how painful to grow.” In about 6 months, and devastating this disease is?” we raised about $250,000.” As encouraged as they were by this, Video in the Making they weren’t raising enough in the So Glenn considered a viral video, time they needed. “Sometimes, something he had on his ‘to do’ I would get sucked into this false list for months. “It was too crazy sense of hope of meeting that of an idea to pursue especially angel donor that was going to since I knew no one in the video grant us $500,000 dollars. It making business and we had no took me about 6 months to budget. I kept pushing the idea realize that was likely not going back as I had no idea how to to happen.” start,” said Glenn. Late one night in February 2014, desperate and Glenn began to think what more out of ideas, he went on Google could be done to reach larger and searched ‘How to make a audiences. He knew social media viral video’. The first person had the opportunity to reach to come up in the search was many more people, but how could a woman named Karen Cheng. they get the story out there? That simple Google search led to “What was different about our a remarkable chain of events. story?” Glenn asked himself. “No one I talked to had ever heard Karen had written an article of Sanfilippo Syndrome. They about 10 ways to make a video could not believe that a child go viral. “Even though I had no would be fairly normal until about idea who she was, I had nothing age 3 and then rapidly just fade to lose,” Glenn said. So he took

50 Crowdfunding Best Practices a shot. He emailed her, telling her many late night email exchanges, Eliza’s story and their cause, and Glenn discussed this with his wife asked for her advice. Glenn was Cara, “Remember that viral video surprised when he got a response idea? Well we have 3 guys that almost immediately. “She wanted want to come and stay at our to help and had some ideas. It house for a week. Is that OK?” still all seemed like a long shot “Even then it all seemed like a though,” Glenn remembers. crazy idea,” Glenn said. The crew Karen contacted a friend DL came to the O’Neill house and Cade who had connections in stayed for 8 days. They took photography. DL reached out to more than 40 hours of footage visual artists around the world and everything was done pro about their story asking if anyone bono, never charging the family was interested in helping. One a penny. Von Wong and team person answered: Benjamin Von took video of day to day life Wong. Benjamin was primarily of the family, the kids playing a freelance photographer who and personal interviews of the traveled the world. He contacted parents. “By weeks end, we had Glenn and said he be willing to become really good friends with make a video for him. “I’m not these guys. They were so caring the best videographer, but I can to take time out of their busy give you something better than schedules to help us,” said Cara. you have today,” he told Glenn. “I can work out of your house The Impact for a week if I can sleep on your During Von Wong’s visit to the couch,” he said. Von Wong told O’Neill’s house, a local reporter him he would be bringing two crafted a media story about other friends to help out. So after the “viral video” in the making.

Crowdfunding Best Practices 51 Von Wong and his crew left the disease and personal story in a O’Neill’s house on March 30 way any viewer, particularly a and then on April 2, the Saving fellow parent, can understand. Eliza video went live on their The video was able to show crowdfunding site. In 15 days, and describe the effects of it brought in over $500,000 in the disease, and even show donations. In two months, $1 the contrast of a child early in million had come in. During the the disease and one further run, the O’Neill’s made the most progressed. Explaining these of connections and worked to issues, the video and campaign publicize the campaign. “I sent provided a stark, emotional hundreds of emails to the media” portrait of the issue at hand. Glenn said. Glenn crafted a press Glenn said the family knew release about a dad trying to save immediately that the video was his daughter’s life with a video their strongest call to action. “No and it worked to interest the words we could write or speak media. Saving Eliza was covered can explain this devastating by national and international disease and our urgent cause any news stations and websites, and better that the 3 minute video at even landed them a feature story SavingEliza.com. With the busy on The Today Show. world of social media flooded with great causes, we knew we “The video is truly moving” had something special here.” The said Glenn. “I can barely watch video was so compelling, that the it, and it is our story. It is true O’Neill’s main campaign slogan and raw emotion. There was didn’t even mention donations no rehearsing.” Von Wong was or funding needs. It was simply: able to convey the complex Please Watch & Share SavingEliza.

52 Crowdfunding Best Practices com. “That’s how good the video Tournament, The Kentucky Derby, is. We felt if people just watched and the Talladega Nascar event it, we would have them in our from sunup to sundown holding corner,” said Glenn. large poster board signs with the campaign slogan and big photo Keeping the Momentum of Eliza. Supporters in other Every campaign has its highs, towns began to do the same its lows and eventually will slow and poster boards were seen at down. “We did a pretty good bicycle races, summer festivals, job to plan ahead as we knew at and the Boston Marathon. “It was some point, the donations would a mix of the campaign organically slow down. You don’t want to going viral and grassroots efforts lose the momentum,” Glenn said. to keep pushing it,” he said. Von Wong had update videos planned and released them just The O’Neill’s credit the success as they saw things beginning of the campaign to one thing: to slow down to once again the kindness and compassion boost the attention back on of others. “When you think the cause. Through grassroots about it, all we did really was efforts, they handed out business open our lives, tell Eliza’s story, cards, flyers, and put up posters and ask others for help. The everywhere they could. They rest was done by the hundreds asked supporters to do the same. of thousands out there sharing, Everything they did was focused liking, commenting, donating, on getting people to the video making the video, running with the simple slogan. Glenn fundraisers, covering our story, stood outside large sporting etc... We can’t thank those events like The Masters Golf people enough who have helped

Crowdfunding Best Practices 53 us and continue to. They are the continue to be a good candidate ones that provide us HOPE and for the clinical trial. It is her only inspiration to continue forward, chance and we have every reason and now we are closer than ever,” to believe she will qualify. We said Glenn. fight for her and so many other children in the same situation. If The Future this gene therapy works, you can The clinical trial has not begun be sure we will be having our yet but is in the final preparation biggest fundraiser of all time to stages. Even though the family ensure this entire generation of has helped significantly to fund children can be saved. Maybe this clinical trial for the possible then we will get that Angel Donor. life-saving treatment, there are no TIME is what these children don’t guarantees that Eliza will actually have and we can’t let money get into the trial. When people stand in the way of life.” ask Glenn how he feels about raising money for a clinical trial Giving Back that his own daughter may not be Since having the campaign able to benefit from, he replies, success, Glenn has been asked “Well, we certainly hope she does to be a guest speaker at various benefit. The truth is if this clinical Rare Disease conferences and trial does not happen and soon, spoke on harnessing the power our guarantee is that she has of social media. “I get emails and no chance of life. We’ve been calls every few days from others clear all along that this funding is who have some type of very going to our Foundation and to important cause. They are asking the research to end this disease. how we did it. I respond to We hope and we pray Eliza will every one and give them any tips

54 Crowdfunding Best Practices and things we’ve learned along really is taking off and working the way. I’m by no means an for our situation. We are each expert, but do have experiences telling our personal stories for that have helped us that others the greater cause of stopping might be able to use. If there Sanfilippo Syndrome,” Glenn is anything we did that could explained. possibly work for other people, we want to help. We know Saving Eliza stands as the most well what it is like to be at the funded campaign of all time beginning and not know where to on the popular GoFundMe start,” he said. crowdfunding site surpassing the next closest campaign by The media exposure of the over a million dollars. It has Saving Eliza video has also raised $1,856,550 from over led to other newly diagnosed 32,000 unique donors. “It truly is Sanfilippo families contacting remarkable and we can still hardly the O’Neill’s Foundation. “In one believe it” says Glenn. “And we case, an early diagnosis was can’t stop now. We are hoping discovered because someone saw to hit the $2 Million mark on the our story and saw similarities in crowdfunding site this year in Eliza’s symptoms to their child. 2015. To get to that $2M mark by We have had many Sanfilippo the time the trial starts would be families join our foundation and an amazing thing.” the fight for the cure. They have their own campaigns for their Takeaways: kids and the fundraising feeds 1. Ask for advice. There are into our Foundation. They have a lot of talented, caring really brought new energy to our people out there that might Foundation. It’s a model that help. You just have to find

Crowdfunding Best Practices 55 them, and ask. They may be story from what he had seen in your town, or you might in the 8 days he was with our reach out on the Internet. family. It was emotional, true That person may not be and genuine. There were no able to help you directly, but edits on our part,” said Glenn. they might point you in the 4. Make it as easy as possible right direction. You may be for the donor. “Make sure surprised at what you get in website links to donation return when you simply ask page are working, easy to for advice. find, and as few clicks as 2. Be personal. “The video was possible to get to that call not filled with the medical to action. The last thing terms or numbers and charts you want is someone who or how the science worked” wants to help your cause Glenn said. “We didn’t think but isn’t sure how to. We that would work well in our could have put the video case. We wanted to touch on our Foundation website people with a very real from the start, but felt the story others could relate Crowdfunding was a better to.” The very personal video platform to rally support,” connected with viewers and Glenn said. moved them to action. 5. Leverage power of social 3. Be genuine. “I don’t think the media. “Everything is on video would have worked social media these days, so had we planned any scenes use it to your advantage. or scripted things we would And not just posts on say. We trusted Ben Von Facebook and Twitter. Try Won to give us a compelling to get coverage by starting

56 Crowdfunding Best Practices with local news. You have tough to stand out. “We were to promote your cause. fortunate with a talented Craft your story and make filmmaker and a disease it compelling and send it to that needs no added drama. websites and bloggers. Every You can’t exaggerate how media story we received desperate this situation is. included the embedded video But it was the way in which and share and like buttons. the video was made that It just keeps the cycle and set it apart. That theatrical momentum going.” element added to a real life 6. Focus on the bigger picture crisis.” (if applicable). “It was 8. Improve your skills. Glenn important for us that while O’Neill recommends the book we were telling our story of Jab, Jab, Jab, Right Hook by Saving Eliza, that all funding Gary Vaynerchuk. It explains was going directly to our how to best use social media, 501c3 nonprofit and to the provides good examples of research for a cure for all Facebook and Twitter posts, children. Our efforts are to and gives good advice on help end a disease, and not how to explain your story to save just one child…but a and to involve others in your whole lot of children.” cause. “The best learning 7. Differentiate your cause. from the book for us was Find something different to continue to tell our story about your cause or and open up our lives. To let campaign and see if you can people get to know Eliza and bring that to the forefront. our cause. To engage with There are a lot of worthy our supporters and inform causes out there and it is them about our goals.”

Crowdfunding Best Practices 57 Video Checklist: The video should be no longer than three minutes. In the first 10 seconds-describe what the campaign is and why funding it is unique. Next, tell the audience who is receiving the funding. People like to know the personal aspects of the story. Tell the history behind the organization or illness. People want to know it is a legitimate cause, problem, or organization. If putting a link to a video in an email, always say in the email the length of the video and state that it is a video. The video should make a connection. Engage others with the video. Try to make it feel as if it’s you talking directly to them. Put links to the video with any social media. Videos can significantly increase donations. Does NOT have to be a professional video. Sharing the video can get the message out to a wide audience faster.

58 Crowdfunding Best Practices Video Checklist: What’s a Great Picture?

Crowdfunding Best Practices 59 WHAT’S A GREAT PICTURE? Get the picture. Make sure you photos show how the disease have many high-quality photos affects the child and the family. for use on your site and on social Show them what life looks like media. As we discussed, videos and how the money raised will are very influential and help you impact them in a positive share your message. Pictures way and really make a are also important and help difference. personalize and differentiate your campaign. Cute pictures Pictures build of kids will help you connect trust. Luke Miner, with your audience. You want co-founder to have anywhere from 3 to 10 of YouCaring, emotionally gripping pictures on encourages people your campaign page. Include to share the pictures of anything that helps personal aspects convey the situation as well as of the campaign. pictures that are smiling and In the few minutes hopeful. you have to connect with potential donors, Make the donors feel they are connecting visually creates part of the project. Pictures can empathy. help them see your life from your perspective. For children battling Pictures build a brand for the a rare disease that is probably campaign. Research says it unfamiliar to potential donors, takes between 6 to 10 touches before you get someone to act. They often do not pay attention in the beginning.

60 Crowdfunding Best Practices GiveCorps founder, Jamie McDonald says, “You want to build the identity of the campaign everywhere. Charity Water is a good example of this. The same image of a well in Ethiopia is used throughout their messaging. By the third time you see it, you know there is a well there, and you are touched.” She recommends iconic images for campaigns too. “Come up with your iconic image and use it everywhere. It has to effectively convey what you are raising money for. There should be a core story and tag line, and then if you add video it is another touch point. If you have a fantastic photo, great, but know that it does not have to be professionally done.”

Crowdfunding Best Practices 61 Pictures Checklist: Gather 3-10 emotionally gripping pictures. Make the donors feel a part of the project. Come up with an iconic image and build the identity of the campaign.

62 Crowdfunding Best Practices What About Perks and Gifts

Crowdfunding Best Practices 63 WHAT ABOUT PERKS AND GIFTS Gifts or no gifts? Some medical Show potential donors that long campaigns do offer perks or term involvement brings rewards. gifts. If you decide to offer some, Experiential prizes are popular. consider making the reward For a team fundraising employee something personal. Larger challenge, if the company really monetary causes have 6 to 7 wants to get them involved, levels of gifts at most, to avoid the top fundraiser could confusion. Be creative and tie earn an extra vacation in rewards to specific donation day or park in boss’ amounts, realizing that most spot for a period people donate between $25 and of time. This $50 to crowdfunding campaigns. creates team building and Levels of donations. Smaller motivates the donations could receive a employees to personalized thank you letter. This participate. is a great gift. If the campaign Donations for is for a child, a gift could be a larger monetary framed painting done by the amounts could child. Another example could be receive naming a video thank you message or a rights, or branding shout out on the donor’s website. on your site. Donors may want an invitation to a monthly webinar, or ongoing Sharing the journey. information on the disease if you Remember, most people giving have connections and access to to medical causes just want a researchers. thank you in return. You can

64 Crowdfunding Best Practices also be creative in who says the thank you. For example, a patient advocate could say thank you. The patient could say thank you. A researcher could say thank you. With medical campaigns you are ultimately dealing with people’s well being, so passion and recognition are important. Let them be on the journey with you. Show your appreciation and give updates.

Crowdfunding Best Practices 65 Gifts Checklist: Be creative. Give them something personal. A personal thank you letter A painting done by the child and framed as a thank you A video thank you message or a shout out on their website.

66 Crowdfunding Best Practices Launch Day

Crowdfunding Best Practices 67 LAUNCH DAY

What to do the first 24 hours? share a picture of them with Launch party. On the campaign the child and tell their circle, “I launch day, experts recommend pledged $50, and here is a picture inviting people to a launch party. of me with the little girl I was In the case of children with telling you about,” he said. medical illnesses, this may play out differently. If the child can Send the email with the link have visitors without the risks when it’s live. On a few platforms, of getting sicker, people can you can get donors pre-pledged; come over for refreshments and research your site in advance. Go an opportunity to take some to your log of pre-campaign pictures that they can share commitments. Then on launch with their circles of friends. This day, send out your reminder will also allow them to tell the emails. Make sure the message is campaign story effectively and in no longer than 4 sentences and a personalized way. The party can includes a direct link to the be low budget and in the home. campaign.

Invite many. Crowdfunding expert Focus on the social impact of Devin Thorpe advises getting as your campaign to best make use many people there as you can. If of your network. First provide an there are 30 people at the launch update on the campaign and its party and each one tweets it to mission, and then thank them for 1000 people, then 30,000 people their pledge and provide the link. now know about the story and Keep the email mission-focused the campaign. Partygoers can

68 Crowdfunding Best Practices not money-focused, and post it on all social media sites where you and your team are active and have a presence.

Make it personal. The biggest mistake people make in their campaigns is to talk about the project and not about themselves. For example, the father who has sons with a rare disease talks about his passion and his work. Be prepared with a team or team member to answer every email. Some campaigns assign one team member to sent out and answer every email so that each response is written in the same voice.

Ask and use feedback on your campaign. Put every effort into the start of your campaign, there is a velocity that happens. Sam De Brouwer believes the first 3 days are critical. Create a force that will continue with the crowd.

Crowdfunding Best Practices 69 Case Study: Engage Your Audience

Sam De Brouwer, co-founder of Scanadu Scout, also led their successful crowdfunding campaign. The campaign raised over $1.6 million on Indiegogo with the initial goal being $100,000. Scanadu Scout is the handheld medical device that tracks your vitals.

When thinking about engagement with your audience of donors, Sam recommends, “Talking to the groups you are working with and finding what is important to them. From this, generate a reached out by email and phone list of goals, and gifts associated to your inner circle. You have with those. Think of perks coming carefully planned your outreach from the ‘DNA of who you are.’” before the campaign begins to The Scanadu Scout campaign warm up family and friends. You effectively engaged donors to get told your network what you are valuable feedback on their device. doing and when the campaign begins. You got feedback from You designed your messaging, set your team. Now what? your fundraising goals, created a video and got great pictures. You

70 Crowdfunding Best Practices Case Study: Engage Your Audience During the Campaign • Hold a launch party on Day One. • Provide regular, detailed updates. • Use social media for the campaign every day. • Engage in offline fundraising and link it to the online work. • Contact the media. • Elicit feedback and act on it. • Make a strong final push at the end of the campaign.

Crowdfunding Best Practices 71 Launch Day Checklist: Host a Launch Party. Email all committed donors that have agreed to pledge. Send email blasts to contacts and answer every email. Check the web page and donor section. Post to all social media sites that you and your team are active on. State a call to action. Ask everyone to share.

72 Crowdfunding Best Practices Running the Campaign

Crowdfunding Best Practices 73 RUNNING THE CAMPAIGN Be flexible. Your plan can and outlets available to you and your likely will change as you are going team. Research and consider through the crowfunding process, social media ads; one family but the planning phase forces you successfully reached 1,500 people to think strategically. Consano with one $15 ad. Always provide founder, Molly Lindquist, explains, the direct link in every share or “80 percent of your fundraising post. Send everyone you dollars will come from your first contact to your and second degree connections.” page. Give updates, Make sure you are connecting add new pictures, with them and keeping them and work to keep updated. Try to make it their the audience in the cause too. campaign. They should feel like Media they know you. When you are in your campaign, And don’t forget to always look for new ways to elicit suggestions promote it. It is very important to and act on them as reach the target audience. Blogs, needed. email, print, social media, TV, radio and events are all areas of Update regularly so your focus for successful campaigns. campaign goes into the news feeds. Instead of asking Know how to use social media. people to donate, ask them to During the campaign, actively share your campaign. Facebook tweet, use Facebook and and Twitter are the two biggest Instagram. Use any social media

74 Crowdfunding Best Practices social media sites used by most focus your efforts to match the crowdfunding platforms. They problem you’re trying to solve. are recommended because they Try to get local TV stations, quickly cross different platforms. local newspapers and bloggers Denny Luan, co-founder of interested with an “angle” they Experiment, says, “Focus on the can use for the story. For medical social aspect. In your message, causes and campaigns, know make it more about the mission the health reporters in your and the social impact.” community. Find out if they have connection to your disease and “Focus on the social cause. Seek out the best blogger aspect. In your in the space. Get them to blog message, make it more about it or ask to “guest blog” about the mission and to their audience. Many media the social impact.” outlets provide an email link —Denny Luan, co- for the author near their byline founder of Experiment so writers are not hard to track down. Know the social good. If you can measure it, tell people what Expert advice. Devin Thorpe, the impact is. For example, $50 crowdfunding expert and would provide clean water for a Forbes contributor explains, family for one week. Explain how “The key to making connections the campaign is going to help with reporters is to do some someone or something. homework on them. Read what they are writing. Choose writers The media can significantly that write about health issues if spread the word of your it is a medical campaign. Know campaign. If you’re not sure how the causes they care about. You to get the media’s attention, can say something like, ‘This is a

Crowdfunding Best Practices 75 close friend and I just wanted to the media, she told them that, tell their story about their son/ “The reason to do an interview daughter’s illness.’” Tell them you is to raise awareness. Genome have read their work and that you sequencing provides new options. want to share a related story with People need to know about them and their readers. genomics and the latest medical research. You have to fight for Write a press release. Send a children and their needs--if the press release as well for insurance won’t cover it, you need writers that may not have the to try something else.” time to cover the story in an in-depth way. She also explained that genome Follow them on social sequencing is so new. It is media and read their constantly developing, and work regularly. it is one of best options. It gives people a lot of hope. And don’t forget to She recommends going to the follow up. Reach out newspaper and telling them this to the media again is the newest research. She also after the campaign explained the work done by Rare begins to tell them Genomics Institute. you raised $3,000 of the $10,000 goal and reiterate the Be persistent. Don’t get mission of the campaign. discouraged. Zsuzsanna said when she first pitched the story Zsuzsanna Darvai’s campaign to members of the media, they for her son’s DNA sequencing did not respond. Then she went attracted media attention and to the TV station six weeks interviews on television. When later, gave them her flyer and pitching her son’s campaign to said please read it. She also

76 Crowdfunding Best Practices said maybe someone would be Donors did not give so you have interested in it at the station. money, they gave to help support Be on top of it and follow up. the patient, a person, a little girl. If you do get media attention, Don’t take credit for their work. thank that new contact. After Zsuzsanna’s interview, she sent Most people are generally the interviewers flowers and interested in learning and chocolate and thanked them for growing. Try to make your bringing awareness to Balazs and campaign mean something to other children with special needs. them. Show how it will directly The TV station professionals impact their life. Keep updating agreed and said it was a great once or twice a day, especially story to tell. between 7:00 am and 9:00 am EST and again between 6:30pm- Updates and Engagement 9:30 pm EST since these are the Give updates about the times people are most likely to campaign to donors. Update use social media. With regular the campaign page and blog to updates, the audience feels keep donors informed on how the connected, and they often donate patient is doing. As the campaign again. They think, “I have an extra progresses it is important to $5 today.” When they comment continue to engage not only on the campaign, you can see donors but to let everyone know their connection to the cause and how the campaign is going. so can other potential donors. You have to post every day. If People want to see you succeed. you don’t post, they can’t share. Always mention the mission of Provide status updates on the the campaign and any progress health of the patient. on the campaign or money raised.

Crowdfunding Best Practices 77 Talk about any media hits. For Mission example, in an update, link a Never mention money without blog post about your campaign mentioning the mission. Avoid and ask people to share it. Or saying, “we raised,” this amount provide photo updates: “Here is of money. Instead always give a picture of our daughter before the donors the credit by saying, she was sick, and here is a “You’ve donated.” Allow specific picture of her in treatment now.” facts to make the story of living And whenever you can, let the with the disease come to life. For patient speak for him- or herself. example, mention the patient having their blood drawn many In medical campaigns, inform times in a day. and engage the audience on the disease state. Explain how it is The goal is to make a connection similar to or different from other with the audience and create diseases. If the patient has a rare interest through updates. “Every disease, talk about current work day I include a photo and video,” on rare diseases in an update. said Susanne Shaw, Rett Cavan’s (Discuss the latest technology aunt and campaign organizer. of genome sequencing and its As long as it is a crisp video with potential for rare diseases.) good lighting, it does not need to be professional. Many apps for Always remember to thank creating movies and videos are everyone for their involvement, free; research what is available support, shares, and feedback for and become proficient with the the campaign. Have a specific technology. person in charge of social media for your campaign if possible so you don’t get overwhelmed.

78 Crowdfunding Best Practices Ask people to share every couple of days. “On Instagram, hashtags are used for 30 seconds to a minute. You can change hashtags on existing posts multiple times each day, and each time you do, it will refresh. I linked my Instagram account to the GoFundMe page. Many donations are only $5. That is ok because $5 really adds up when many people donate that amount,” advises Susanne.

Work together toward a common goal. Finally, take advantage of other campaigns with similar values by engaging in cross promotion. This way both campaigns have twice as many contacts.

Crowdfunding Best Practices 79 Updates Checklist:

Always state the mission. The more stories you share, the more traffic you will get. Tweet and post on Facebook, Instagram and any social media sites you are active. More content equates to more donations. Provide status updates on the patient’s health - the patient’s perspective is important to share. Provide a status on the campaign. Talk about media coverage. Share new photos. Update videos. Provide updates on disease state information. Recognize those who have donated.

80 Crowdfunding Best Practices Timeline Having an end date to the first 30 days of properly planned campaign helps create urgency. campaigns. You want to maintain If the money is for an upcoming the buzz about your campaign. clinical trial or medical procedure, There has to be a deadline to tell people so they understand create the urgency. One of your why you need the money soon. most important updates will be reminding people about the Early momentum is key. timeline. Toward the end of the According to Kickstarter, if a campaign, you need their help the campaign is not funded within most to reach the goal. 45 days, its chances of getting funded decrease significantly. Timeline Checklist: However, sometimes it makes 1. Have a start and end date. sense to set a longer time period; a lung transplant project 2. Create urgency. researcher raised $100 from each 3. Reinforce the message. of 20 donors over the course of four months. It’s hard to know the exact, appropriate time just Offline Fundraising Efforts remember that early momentum Publicize all offline fundraising and an established end date are efforts on your campaign page important. and social media. Publicizing your offline fundraising demonstrates Maintain the excitement. Most that you are doing everything you campaigns last 30-60 days and can to reach your goal. most donations occur during the

Crowdfunding Best Practices 81 For example, Roger and Jeneva organizer raising money for a Stone quickly reached their research project had an offer crowdfunding goal, but Jeneva from a friend to talk at McKinsey. also had an idea for creating She discussed her research holiday cards that showed people project and everyone was excited how to donate to their campaign about it. with a link. Zsusanna Darvai took many Team inquiry. Ask your team opportunities to speak about the members to reach out to all of campaign for her son Balazs. One their contacts and organizations of Zsuzsanna Darvai’s successful from daily life. Let them do the crowdfunding moments came initial inquiry and don’t go along when her older son’s martial to the meeting yourself unless arts teacher heard about her your friend recommends it. This effort and offered to do a kick- allows people to say no without a-thon, their usual fundraising feeling uncomfortable. This also event, to benefit the family saves you from unnecessary cause. Events like kick-a-thons, stress. walk-a-thons, and read-a-thons include everyone in a particular Speak at events. Research and organization like a gym or library reach out to organizations that and expand your circles. If you go offer “lunch and learn” kinds of this route, remember to thank the events. Presenting your campaign organization and its members on to a group is a great offline your site. opportunity to talk about your cause, raise awareness, broaden Zsuzsanna also approached the reach of your network and smaller, local restaurants who gain new donors. One campaign were unable to donate money,

82 Crowdfunding Best Practices but offered to provide food at an Advice and Feedback event. Many restaurants will give What do you think? Successful gift cards and related “prizes” for crowdfunding campaign your cause. organizers agree that advice and feedback can be invaluable for Create a Flyer. Susanne Shaw your crowdfunding campaign. used similar methods for her Talk to both people who had nephew’s campaign. She brought successful crowdfunding a flyer she created to local campaigns and those whose businesses to more effectively campaigns didn’t meet their solicit donations. She also asked goal to better plan your own to post her flyer. Eventually she campaign. was able to secure donations of goods or services from local Just ask. The biggest hurdle for restaurants, bands and even a most people beginning their first beautician who donated the crowdfunding endeavor is to let money from 12 hours of her work. go of inhibitions and ask for help. What could you include in a However, the worst case scenario flyer to post at local businesses, is that people do not contribute the library, and the community to the campaign. That’s it, so center? Briefly summarize the don’t take it personally. It’s not campaign, show a picture of the a comment on the value of the person who is benefitting, and campaign. provide your link.

Crowdfunding Best Practices 83 The Final Push to the Campaign Goal

84 Crowdfunding Best Practices THE FINAL PUSH TO THE CAMPAIGN GOAL Techniques and Metrics • How many clicks? If you are $2000 away from the • What is the total time spent goal, let everyone know you are on site by visitors? almost there. This is not a huge • What is the user generated amount to be funded by a large content? group. Keep people engaged by explaining your story and mission again and thank everyone for Stay involved. While your their contributions so far. Then let campaign is active, and especially them know that you are almost as you head to the finish line, you at your goal but need them for will have to be involved daily. one final push. Many successful Donors expect transparency, campaigns get repeat donors. so share information with them to cultivate partnerships. Make sure you are monitoring Acknowledge the active roles these aspects of your campaign: inherent to crowdfunding by saying “please help fundraise,” • Conversion: how many people not “please donate.” A fundraiser who see also donate? will be actively involved, emailing all of their contacts, and this is a • How many shares are you more effective strategy. getting per week? Per month? • How many likes on Facebook? • How many unique visitors? • What are the page views per visitor?

Crowdfunding Best Practices 85 Say thank you-again. When you finish your campaign, thank all of your donors and post the final update and your results. Let everyone including your media contacts know that you reached or exceeded your goal and that you could not have done it without them. This will further highlight your cause and raise awareness.

86 Crowdfunding Best Practices Culture Change in Science Crowdfunding has prompted a Researchers should think of culture change in the scientific potential donors as members community. In academia, of their virtual lab. They have funding is the single biggest joined their team. They means issue. A big asset crowdfunding they must keep the lines of offers is the ability to share communication open. the results with the donors. With this shift in the Crowdfunding supports ideas that donor base, you would otherwise go unfunded. don’t have to Researchers have confirmed donate $100,000 that interaction with donors can to be connected change their perspective on how to the project. to conduct research. The researcher should use a Role models. Researchers spend conversational too much valuable time writing tone to give grants. This is the crowdfunding updates and advantage: it allows researchers information; the resources they need to do the this deepens important work. Among the best engagement. ways to increase interest in and awareness of science is to foster Final Thoughts the work of researchers to serve Throughout this book, as role models. This helps young you have learned tools and tips people to see the role science can from the experts on how to play in their lives. have a successful crowdfunding

Crowdfunding Best Practices 87 campaign. Planning is key. Build your team and prepare your messaging early. Ask for feedback and thank everyone that supported and helped your campaign. Crowdfunding offers a unique opportunity to engage your network to support your cause.

88 Crowdfunding Best Practices Appendix

Crowdfunding Best Practices 89 APPENDIX With more than 500 crowdfunding platforms, we will focus on the top sites for personal medical causes and those that specialize in raising money for research.

Crowdfunding All or Keep it Website fee Processing Fee Support Platform Nothing All

2.9% + $0.30 2.5-5% based fee per Yes CauseVox  on plan donation 2.9% + $0.30 0-3% or 0-5%, fee per Yes CrowdRise  based on plan donation

3% if the goal is 5% Yes Experiment  reached

2.5% + $0.30 OzCrowd   2.9% fee per Yes donation 2.9% + $0.30 Up to 5% fee per Yes Piggybackr  based on plan donation 2.9% + $0.30 GoGetFunding  4% fee per Yes donation 2.9% + $0.30 Causewish  4% fee per Yes donation

90 Crowdfunding Best Practices Crowdfunding All or Keep it Website fee Processing Fee Support Platform Nothing All

2.9% + $0.30 5% All or Nothing Medstartr fee per Yes   8% Keep It All donation 2.9% +$0.30 YouCaring  no fee per Yes donation

2.9% +$.50 fee GiveForward 5% Yes  per transaction

Indiegogo   5% 3-5% Yes

3% +$0.30 fee none Yes Indiegogo Life  per donation

GiveCorps  3% Yes

GoFundMe  5% 3% Yes

2.9% +$0.30 4.9% Yes Fundly  per transaction

2.9%+ $0.30 5% Yes Fundrazr  per transaction

4% if goal attained RocketHub   8% if goal not 4% Yes attained

Crowdfunding Best Practices 91 Acknowledgements

92 Crowdfunding Best Practices THANK YOU TO:

Crowdfunding experts who shared their advice and Luke Miner, co-founder experiences. In particular, I YouCaring would like to thank: Ethan Austin, co-founder Denny Luan, co-founder GiveForward Experiment Devin Thorpe Molly Lindquist, founder Crowdfunding expert and author Consano of Crowdfunding for Social Good, Financing Your Mark On The Rob Wu, founder World CauseVox Breanna DiGiammarino, Head of Andrea Lo, co-founder and CEO Causes Piggybackr Indiegogo Nick Karolidis, Director OzCrowd Elizabeth Iorns, co-founder Science Exchange Sandip Sekhon, CEO & Founder GoGetFunding and CauseWish Nick Sireau, Chairman and co- founder Adam Griff, COO Findacure Medstartr Jamie McDonald, founder Annette Hauswirth, Manager GiveCorps CrowdRise

Crowdfunding Best Practices 93 THANK YOU CONTINUED Jeneva Stone, mother of Robert Dr Kimmie Ng, Assistant Rare Genomics Institute Professor of Medicine Dana Farber Cancer Institute Zsuzsanna Darvai, mother of Role of Vitamin D Balazs Supplementation in Colorectal Rare Genomics Institute Cancer on Consano

Ignacio Garcia, father of Joaking Rare Genomics Institute I would also like to thank Sam De Brouwer, Zsuzsanna Darvai, Sam De Brouwer, co-founder Ignacio Garcia, Kimmie Ng, Scanadu Scout campaign on Glenn O’Neill, Susanne Shaw, and Indiegogo Jeneva Stone for sharing insights about their own crowdfunding Glenn O’Neill, father of Eliza campaigns. Thank you to the Saving Eliza campaign on Rare Genomics Team who offered GoFundMe comments, assisted in the editing, proofreading and design. In Susanne Shaw- aunt and particular, Karla Lant, Mike Russo organizer for Rett and Christine Yu. Rett’s Medical Relief Fund on GoFundMe

94 Crowdfunding Best Practices ABOUT THE AUTHOR Ana Sanfilippo President of Linde Consultants Ana Sanfilippo is founder and president of Linde Consultants, a marketing consulting firm. She is Vice President of Global Strategy at Rare Genomics Institute, a nonprofit focused on helping rare disease patients. Ana is coauthor of Rare Diseases: Diagnosis, Therapies and Hope, a book combining inspiring stories from families living with rare diseases, advice from top scientists and industry experts, the latest scientific developments in genomics and a parent’s toolkit with best practices. Ana has extensive experience in marketing, sales and training. She advises organizations on strategic planning, customer engagement, commercialization, product marketing, and business development. Ana earned an MBA with distinction from the Kellstadt Graduate School of Business at DePaul University with specialization in Health Sector Management and Change Management / Leadership. She has a B.S. in Business Administration from The University of Illinois at Urbana-Champaign.

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