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Fundraising: It Sure Isn’t Easy, But It’s Worth The Effort

RibbonFundraising isn’t easy! has big dreams, but we have certainly found out that it takes a huge effort to raise even a small amount of money to make those dreams happen. Here is a three-part article that explains where  has been, where we are now, and what we hope to do in the near future.

Part 1: Our History

Let’s look at some history of fundraising activity. In 2012, a small group began trying to gather enough money to file for nonprofit status. We started from scratch, and we were able to reach our goal. We filed for nonprofit status at the national level and obtained it successfully in early 2014.

With our nonprofit status approved, we moved forward with ideas that our Facebook members suggested for fundraising. We designed a logo and a ribbon for and began selling merchandise on CafePress and on our new website. Later, we added bracelets for awareness because the bracelet idea had been a very popular one among Facebook members. Despite the interest members had in designing these items and having them available, the actual sales of these items were, and continue to be, very slow. Getting Facebook members to go to our website and purchase these items has been difficult, but we so much appreciate those who have made the effort and purchased an item. Because purchases have been so slow, we have many bracelets and ribbons sitting on the shelf, and our costs to cover the purchase of these bulk orders have not been met.

Another fundraising idea we tried has also had questionable success. We posted files for coin collection jar labels. Some Facebook members responded that they wanted to put coin jars up at local shops and stores, but we have no current report of any jars that are actually out there and have not received a donation from these jars from membership yet.

Some activities work together. Although actual bracelet sales have been slow, one particular bracelet sale led to a large donation. An individual who had no prior contact with (until he was approached to buy an bracelet) decided after hearing about us to make a $500 donation. He did so through the donate button. If more Facebook members can become involved in selling items such as ribbons and bracelets, these conversations may lead to larger donations. Any time we can talk about , we are opening a door for a potential donation.

In summary, is just beginning to make some headway with fundraising. For the most part, we have not yet been able to cover our basic operational costs through any of our fundraising activities. We need far more involvement of the Facebook membership in fundraising activities to increase our success.

Part 2: Our Current Activities

What is doing now to move toward more successful fundraising? That’s a good question! In a nutshell, we are both expanding and refining our fundraising activities based on what we have learned so far through our experiences.

We have looked for some “no cost” options for raising funds. For example, we have encouraged members and friends to sign up with Amazon Smiles so that when they make purchases, a percentage goes to as a donation from Amazon Smiles. (To sign up, go to Amazon Smiles and choose as your charity of choice.) We are now also exploring Google Grants.

We are attempting to connect with large organizations, such as IRUN4, with a membership of more than 20,000 people, all invested in supporting individuals with disabilities. We connect with these types of organizations to make more people aware of the condition of sacral agenesis/caudal regressions syndrome (SA/CRS) and to steer more people to our website. More people visiting the website means more donations.

We have had many suggestions from Facebook members about things that we could sell—different kinds of bracelets, different kinds of T-shirts, and other items. However, we have two choices when it comes to merchandise: we can put individual items with our logo or ribbon design up in CafePress, or we can purchase a bulk order and then sell them through our website directly. If we put up a new item in CafePress, there is no cost to . If we buy items in bulk, we have to pay for those items, and then they have to actually sell. Because our sales of magnet ribbons and bracelets have been very slow, we are left with a large inventory of these items, and our revenue has not even covered our initial cost of purchasing the bulk order yet. Therefore, we won’t buy more bulk items until we have exhausted our current inventory.

Some Facebook members are interested in purchasing their own bulk orders of T-shirts or other items with the  logo or the awareness ribbon. For copyright purposes, we need to exercise some control over the logo and ribbon, so we have just drafted a memorandum of understanding that must be signed between the individual and so that this type of activity can happen. That agreement is now available to Facebook members by request for anyone who wants to use the logo or ribbon design to purchase their own fundraising items and sell them to raise money for . However, for those direct sales to occur in your local area, must be registered as a nonprofit organization in your state.

Another recent opportunity comes from matching employee funding, so we hope that our Facebook members will contact their employers to see if their companies offer matching grant programs. These programs may double the amount of a donation that an individual makes to  because the employer makes a donation of the same amount to the same organization.

We are aware of strong interest from countries outside the United States to offer their support in donations and fundraising. Donations through our website can come from anywhere, and the donation button can accept many different currencies. However, we do not have a means by which to gain nonprofit status in other countries yet, and any fundraising on behalf of in other countries must comply with the laws of that country. We, of course, continue to serve international members in as many ways as we can, and we are working on translation of our materials and website to make it accessible to more people around the world.

Finally, has identified a host high school for a 5K fundraiser. So, we are in the midst of plans for that event.

Part 3: Future Activities

What’s next for fundraising, and what’s it all for anyway?

Sometimes Facebook members ask us, “What is the money for?” It does not cost money to post on Facebook or have an organizational page. However, there are many costs for running an organization. Doing anything more than just Facebook costs money, and as an organization plans to do much more than just having a Facebook page. With a Facebook membership that has surpassed 600 in number, we should be able to do just that!

  1. We have nonprofit registrations to pay for in each state and renewed every year. At some point, we want to have opportunities internationally as well. Because we do not have enough money to register in every state, we make our decision based on where we think fundraising activities might happen, where our most active fundraising Facebook members live, or where registration costs are minimal. We are registered in 34 states, and we may add one or two more as our budget allows. If a member has a fundraising activity idea and lives in an unregistered state, contact us so that we can discuss registering in that state.
  2. We have a targeted goal for 2015 to develop information packets for doctors, families, and educators about SA/CRS. Funds will go into the research, design, development, and distribution of these packets. We aim for these packets to be printed in several languages for the benefit of our Facebook members everywhere.
  3. We have basic operational costs such as maintaining a post office box, a website, and a dedicated phone line. We have paper and printing and mailing costs as well. For example, more than 70 letters were sent to various doctors with requests to join the medical advisory board. There are also costs associated with purchasing bulk items for fundraising.
  4. We have long-term goals that include conferences and summer camps for individuals with SA/CRS and their families. Efforts like these take a lot of money, especially if we want them to be available to many and if we want activities that reach our broad international membership.

To make these things happen, we need far more participation in our current and our future fundraising activities. We cannot spread ourselves too thin, with a vast number of activities that take time and effort to organize and coordinate but that do not have much yield in the way of donations. We have to choose fundraising activities wisely and grow gradually. We also cannot move forward with just a few people actively involved in fundraising. We need everyone to pitch in so we can flourish.

Our first big fundraising event will occur in May, with a 5K walk hosted by a high school in Virginia. We don’t know how much money may come from this event, but it will definitely be our biggest activity so far. We are also combining this activity with an meet-up with families and individuals traveling in from surrounding states.

The 5K, or “fun run,” event is an opportunity we would like to see in every registered state. We would like for every member to check with their local schools, especially the schools their children are attending, to see if the school will host a “fun run” for . We think there is a great deal of potential in these kinds of activities because they raise awareness and funds at the same time.

By far, the hardest part of fundraising is learning how to do it. There are a myriad of grant opportunities. It’s easy to say “just get a grant,” but grants have to be researched, and then grant applications have to be written. Grants are very specific about their requirements. On our board, we have some expertise with writing grants but none for finding them, and we have not found those skill sets within our Facebook membership yet either. As we grow, we hope to be able to develop to the point where we can locate, apply for, and win various grants.

This three-part article covered the past, present, and future of fundraising activities. With your help, we can do great things that will enhance the quality of life for people with SA/CRS and their families.

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The International Sacral Agenesis/Caudal Regression Association is a 501(c)(3) organization.

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