A Successful Fundraising Campaign to Pay for a Transplant: Lessons Learned

Recent events reminded me of this article. Important info and some guidelines about discussing fundraising with you transplant team and how to manage it. - okarol

A Successful Fundraising Campaign to Pay for a Transplant: Lessons Learned

By: Jessica

My name is Jessica and I received a kidney from my sister. This was my second organ transplant.

On April 2, 2009 my sister Amy donated her left kidney to me. I needed a kidney because my heart transplant medication caused my kidneys to fail. . I found out that there might be a chance of a transplant in August 2008 and by November, things were moving quickly.

We officially began the transplant process in November and found out that the cost was going to be upwards of $100,000. I found out that my insurance only covered $30,000 yearly for organ transplants, including kidneys.

We were told, the first time, in late March that “due to the fact that we could not pay out of pocket, for the remaining balance, we would have to postpone the transplant.” This was the reality and it was harsh. At that point we took matters into our own hands,.

The next day, after recovering slightly from the shocking phone call, Amy emailed a core group of our friends on Facebook to fill them in on the situation. She asked if anyone knew how to set up a fundraiser through Facebook and see what other advice they could offer as to how we could get the money in order for me to get the transplant. Amy’s message was as follows:

Subject: “NEED HELP ASAP”
“Hi,
I’m sure most of you know that Jessica needs a kidney transplant and she will be taking one of mine. Unfortunately we have had some major problems with insurance and have hit another bump in the road. I need to figure out how to raise some money asap. If any of you know how to do this through Facebook or know of someone who knows how to do this let me know. The insurance will only cover $30,000 and the whole transplant will cost over $100,000. The rest we will have to pay out of pocket, which we definitely do not have. The hospital will not move forward if they don't think we can pay for the transplant. She cannot wait another 3 months for a kidney.
PLEASE let me know!
Thanks so much,
Amy”

Our friends responded within a few hours of this message. This was a total shock to our friends as well, because I was very private when it came to medical issues. One of our friends suggested going to a website called Give Forward. This was a way to tell your story and set up a fundraiser where people could donate to your cause. Amy spent three hours just writing in all the details of what was going on: a description of why she was fundraising, pictures, where the money would be going, a timeline, and much more. The Give Forward website had everything Amy needed to start fundraising almost immediately. This process helped her strategize, organize and get excited about fundraising; because fundraising is a daunting task, especially for medical purposes.

She decided she wanted to raise up to $100,000 in less than 90 days. In three hours of having the fundraiser published online, we had over $5,000 in donations. We did not raise $100,000 but we did raise over $30,000 in less than five weeks, thanks to our wonderful family, friends and amazing strangers. On Facebook, Amy made the fundraiser an event, because she didn’t have emails or phone numbers for all of our friends. It was a way to have more people see it and Amy knew that if she sent the invitations and asked people to invite their friends, more people would see it and more money would be raised. She also created a 24 hour Facebook event where everyone changed their status to the fundraising website, creating mass awareness and drawing people to your fundraiser. Amy called it “HELP JESS DAY.” My mom was busy contacting our local politician Mark Kirk, Illinois Congressman, who helped in making phone calls to agencies, moving things along, including the hospital, and the Medicaid and Medicare offices.

The co-founders at Give Forward contacted the media and the media and proceeded to interview us. Our whole fundraising campaign was exploited by the power of social media.

We were finally on our way to the transplant. I received my schedule that mapped out the two weeks leading up to my surgery date. It was filled with Plamapharesis treatments and dialysis times. Amy and I were going to pick my calendar up at the hospital when once again the social worker, along with a patient representative who was only there because of Amy contacting the office a few weeks prior, as well as a financial representative who pulled us aside and sat us down in a little corner room. They began to tell us straight out that it is their policy to not proceed with the transplant, for a second time. The reason was because we were fundraising and never told them. We had no idea that fundraising was against policy, and came to find out it was not. There was a legitimate concern because there was a specific amount of personal assets that could be obtained in order to get Medicaid. If you were over that specified amount you would not be eligible. What the social worker and everyone else in that room failed, once again, to talk about what the issue was, what was going on, and all the details of why and how we were fundraising. They did not ask us if the money was personal assets, which they were not, they automatically assumed so. I knew that if I had more than the set amount of money I would not receive additional insurance, and I was not going to let that happen. I told them that the surgery was going to happen on the date it had been scheduled for, that they best communicate and figure out how that is going to happen, as well as next time they want to postpone the surgery they should see what could be done first before telling me the way they did, again.

The money we raised went into the medical trust fund that my mom had set up, with COTA (Children’s Organ Transplant Association) during the heart transplant, ten years earlier. This fund was strictly for transplant-related expenses and could be used for nothing else. The fundraising was huge success. We did not raise the goal of $100,000 but we raised enough to help with the upcoming costs. Needless to say I finally received my kidney transplant.

This situation has very much changed my perspective on being an organ recipient. I didn’t used to like people knowing that I went through a heart transplant. With the kidney transplant, I am more open to sharing my story and only hope that I can help others going through the same thing. I am very grateful to Amy for her selfless gift and to my family and friends for their love and support.

These are some of the key steps Amy took and how she organized such a successful fundraiser for me.

1. Organize your thoughts and get all of your facts in order so you can successfully answer these questions. Why are you raising money? Who or what is the money for? Where is the money going? Why should people donate? What is your time frame? How much money do you need to raise?
2. Find a reputable agency (a 501c3) which holds the money you raise and administers it to you when you need it for medical expenses. This means that the money is not a personal asset and is used for medical purposes only.
3. Now that you have all of your thoughts, information, and trust fund in order, set up your fundraiser on Give Forward. Fill in all of the open fields and be as specific and thorough as possible. If this is important to you, you have to make the time to do it.
4. Send out a preliminary email to your close friends and family with the website link for the fundraiser, a short description about the fundraiser and why you need their help. You can send the same message to close friends on Facebook or change it up a bit.
5. Make your fundraiser an event on Facebook. Set the same timeline as the event on Give Forward and use the same information for both. This keeps it simple and it will be easier to add updates of your current situation. I created a three month event on Facebook because I didn’t have all of my friends’ emails or phone numbers. I knew that if I sent an invitation for the event on Facebook and asked for people to invite all of their friends, more people would see it and more money would be raised.
6. Create a 24hour event on Facebook, where everyone changes their status to the fundraising website. This creates a large mass of awareness all at once and draws more people to your fundraiser. I called my event “HELP JESS DAY” and set my 24hour event for a Tuesday/Wednesday, because most people are on Facebook during the middle of the week. I kept the website link as my Facebook status before and after the event because I wanted to reach my fundraising goal.
7. If people make their own fundraising event to help raise money for your fundraiser, make the effort to go to them. If they are taking the time and making the effort to help you, support them by showing up. This is a way to say thank you and put a face to the cause of what the fundraising is for.
8. Contact your local state politician/congressman if you need help with government resources, such as Medicaid or Medicare. They have the ability to make calls into these agencies to help move the process forward.
9. Contact the media.
10. Be persistent, gracious and focused on your goal. Update your fundraiser weekly and if your friends and family want to help you in some way, let them. If people ask if they can blog about you, interview you for a news paper, radio or school magazine, DO IT! It will help get your fundraiser noticed.

“If you can imagine it, you can achieve it”- William Arthur Ward

http://www.kidney.org/transplantation/transAction/shareShowStory.cfm?storyID=336