While medical science can provide incredible advances in effective treatments, it comes with a very high price, particularly for things like transplantation and recovery from spinal cord and/or brain injury. It’s becoming more common for people in need of specialized equipment or services to find that insurance does not cover the costs. Family and friends frequently rise to the occasion to supplement costs with donations, fundraisers and direct appeals.
The purpose of this post is to help those who are in a position to organize effective fundraisers in such situations.
The first step is to organize family and friends. The simplest method is setting up a Lots of Helping Hands website. This is free, easy to do and it only lets those people have access to the site that you deem appropriate. In this way, you can quickly identify who is willing to help out and in what types of ways. Just because some friends and family may not be on-line should not be a deterrent. Pair them with someone who is, so they are “in the loop,” and what they’re doing can be logged on so duplication of efforts is reduced.
Keep in mind that people are more likely to give if a) they know what you need and b) you keep them updated and informed. If you set up a Lots of Helping Hands website and rarely update it, it will become a source of frustration.
Document everything you do, so that if you’re not available, someone else can easily pick up where you left off. Be sure to keep the names, and contact information of everyone you talk to and include dates and brief summaries of conversations. This can be done on-line, or just keeping a special notebook with you will help considerably.
Understand what the financial obligation might be. What will insurance pay for? If money is raised for this person, can the insurance company insist that this fund be used before they will reimburse? In short, do your homework. Call the insurance company. Get them to put in writing what they will and will not cover. Make sure you keep information on who you talked to and when.
Most hospitals will have a “patient advocacy” or social services program that can help you determine what types of unreimbursable costs as well as limited benefits you will most likely encounter. They can give you a good idea from past experience about what the patients needs will be, impact on family and caregiver, what’s covered and what resources might be available to help you with costs.
In putting together your “costs” be sure to factor in things like money lost from missed work, travel, meals, and hotel rooms. Keep in mind that donations such as frequent flyer miles and gas cards can go along way to help reduce travel costs. Share your list of expenses with your circle of family and friends. You never know who knows who, which can help move you quicker to your goal or ease staying in a strange town.
Whether you are dealing with a transplant or not, the National Bone Marrow Donor Program’s Mapping the Maize has good on-line tools for calculating expenses, understanding insurance etc. You can download a copy from the website or obtain a free printed copy by calling 1-888-999-6743 or 612-627-8140
Once you have completed this exercise, you will have a dollar amount that is needed. Don’t let yourself become overwhelmed by it. Keep in mind the “March of Dimes” model, where the goal was if everyone could just send a dime a cure could be found for polio. Many people did just send a dime, but many more contributed hundreds and even thousands of dollars.
Develop a plan for raising the money needed, while taking care of day to day expenses. Ideally, the cash flow in will balance outgoing money needed for care. Use the on-line tools from Mapping the Maize to help you develop your plan.
Because an individual is not a registered charity, donations are not tax deductible. There are non profit organizations, such as NTAF (National Transplant Assistance Fund & Catastrophic Injury Program) and National Foundation for Transplants that can receive designated funds for the individual, whereby donations then become tax deductible. Sometimes a church or civic organization (e.g. Rotary) will be willing to take on this role. These groups can provide a lot of assistance with fundraising ideas and support.
Use caution in selecting a fundraising organization. Make sure they are legitimate and you have seen their audited reports and their 501© 3 credentials. Talk to other people who may have used them and ask at the hospital what they know about the organization. The last think you want to do is raise money that benefits an organization and not the person in need.
If you decide to do this on your own, identify someone who will be in charge. A separate trust account, with a designated person to administer it, should be established. This account can only be used for specific purposes, which are identified to anyone wishing to make a donation. Be clear that if money is left in the account after the goal is achieved (e.g. transplant takes place, equipment purchased) identify where remaining funds will be distributed. Finally, know the tax laws for donating funds and keep good records of all donations received.
Once you have figured how much money is needed and where it will be “housed,” it’s time to raise the money. Below are ways to go about fundraising:
• Ask individuals for their assistance in raising money and make it easy for people to donate. A well written fundraising letter can be a good tool. Keep in mind that people like to have options in how they give and what they give to. If you will be doing a lot of traveling, make sure people know that they can donate gas cards or frequent flyer miles. Make sure that they are aware who is running the fund and that all checks can be mailed directly to the bank handling the account. To make it easier, send self addressed stamped envelopes to them.
• Offer multiple ways for people to donate anonymously, such as donation boxes at churches, school, local stores or other community locations. Raffles work.
• Have fundraising events that relate to the person in need. For example, if the person was a golfer, holding a golf tournament would have special meaning. Where the person goes to church, school, work or play are all potential places that can take leadership roles in planning and carrying out fundraisers that have particular meaning.
• Have fundraisers that community will enjoy. Having events that will appeal to a broad spectrum of your community, whether they know the person or not, will help to generate both money and interest. Road races are very popular. If you can find someone willing to do a matching donation, this can add a boost to your event.
• The ever popular “spaghetti dinner” can make a quick $2,000. These are easy to organize, ingredients aren’t expensive and many places will be willing to donate ingredients, paper products etc. It’s always good to combine another activity with the dinner, such as a 50/50 raffle, silent auction, door prizes etc.
• Work with a local group so that you can have a “give-a-way” for people to take home. Things like mugs, T-shirts, and pens are used so people will notice that you are raising funds. Include a web address where people can go for more information on making a donation. The more eye catching the art, the more people will read it and take notice.
• Use social marketing tools like Facebook and Twitter to keep people up to date, where and when fundraisers are happening. Check out Rob Laird Organ Transplant Fundraiser on Facebook There is also a free web resource called Give Forward, which lets you set up a free web page to collect funds.
• Press coverage really helps. Everything you do, where public can attend, should have good advertising.
• Keep information current. Those who are donating are invested. They want to know how the person is doing, so be sure that each step of the way, you keep your web information up to date and press releases active.
• Write thank you notes. If appropriate, mention donors in your press releases.
Fundraising for a Friend of Family Member from the National Marrow Donor Program
Mapping the Maze: A Personal Insurance and Financial Guide to Marrow and Cord Blood Transplant
Children’s Organ Transplant Association