How To Put The Fun In Fundraising or, All You Need To Know About Starting A Transplant Fund
Questions: by Andrea Eisenman
Answers:by Jerry Cahill
We all know that it is a big decision in anyone’s life to start thinking about getting a transplant. Many of us know that beginning the evaluation process for bilateral lung transplant involves many factors: deterioration in health, being mentally prepared and having a good support system. Not many people know that starting a transplant fund is equally important.
Jerry Cahill has such a fund and currently is on the waiting list for bilateral lung transplant at NY-Presbyterian Hospital. He was so enthusiastic about it that I asked him some questions regarding the process of starting a transplant fund. Hopefully, this will be helpful for others who are considering transplantation.
What is a transplant fund?
Contributions are sent in to the National Transplant Assistance Fund (NTAF) and are held in regionally restricted funds to be used for uninsured medical expenses incurred by the patient. These funds are administered by NTAF, not the individual. People set up a fund through NTAF to help with the financial burden of the unanticipated costs that insurance does not pay for when you are going through a transplant.
How did you learn that there was a transplant fund?
While researching the Internet once I was listed for a transplant, I came across the National Transplant Assistance Fund (NTAF) (www.transplantfund.org) 1-800-642-8399
NTAF acts as the administrator of regionally restricted funds in honor of the more than 3,200 patients they serve. NTAF has a 25-year record helping patients to afford critical, but uninsured, medical expenses related to transplantation — helping patients, their families and communities nationwide to raise more than $57 million (to-date) for critical medical care, that otherwise may be unaffordable.
Anyone can start a fund through NTAF, once it has been demonstrated that there is need and that the individual is working with a hospital or transplant center. A social worker or financial coordinator must fill out part of the NTAF application to verify this.
Setting up the transplant fund is very easy and painless. I originally thought about opening up my own fund like “Jerry’s Transplant Fund”, but that involves too much paperwork and legalities. NTAF makes it easy and stress-free. They handle everything for you.
Is the donated money tax deductible?
Yes, NTAF is a 501(c)(3) nonprofit charitable organization – providing tax-deductibility and fiscal accountability. People donating feel more comfortable donating to an organization versus an individual person. Contributors can be sure that their contributions are used for medical expenses only.
Is there only one transplant fund available? Are there more than one in the US?
Yes, a few; however, I have researched similar organizations like NTAF but felt very comfortable with NTAF. They were very informed, and made me feel at ease. It’s a “partnership”. NTAF is the largest financial assistance organization in the United States for transplant patients – providing almost twice as much assistance in 2007 as the next largest organization.
What can the funds be used for, exactly?
Medication, relocation … any medical bills related to CF/transplant. The full list of expenses paid include: health insurance premiums, medications, deductibles and Co-pays, transportation to and from the transplant center, relocation or moving expenses, temporary housing due to relocation, mileage, tolls and parking fees for transplant center visits, lodging expenses for patients and support person, uninsured transplant-related procedures, living donor expenses, and search fees for bone marrow donor match.
How much paperwork is involved with getting funds for paying bills?
Simple! All you have to do is fill out an NTAF Fund Request Form and submit it along with your receipts/bills for approval.
How did you get started?
I got started by calling NTAF and speaking to a patient services manager, Judy Macgregor, and she explained everything in detail and made it sound so simple. – It was a relief!
NTAF assists with everything from how to fill out the initial application to payment and reimbursement of expenses/bills. NTAF has an experienced staff that is available to assist with fundraising guidance, event fliers and materials, as well as media assistance.
Did you feel awkward asking people you know for funds?
NTAF supplied me with a starter kit that explained the “how to” and that started the ball rolling. You would be amazed how many family members and friends were so willing to help out and form a little committee. People love to help out and be needed.
How did you explain to friends/family what the money was for?
In my case, I created a brochure that told my story. Since many people already knew about my illness, it was not a shock.
Many times, the NTAF patient services department will suggest to a patient and/or their family/friends/fundraisers to draft an appeal letter to the community, explaining their story and need for help.
Is getting funding possible only if you have a large family or many friends?
No – fundraising has infinite possibilities through family, friends, community events – you just have to get started.
Here are some examples of my fundraising:
- I arranged a high school reunion that included a battle of local bands. The event had raffles and auctions, with local restaurants and bars donating food/beverages.
- Local bars did a) karaoke night and b) Monday night football with entry fee and kegs of free beer that were donated by a specific beer company.
- My local track club did a 5k run with T-shirts (that were donated) and the entry fee was donated to my fund.
- The two high schools where I was coaching did what is called “dress down day” and you pay $5 to dress down and wear jeans – that money was donated to my fund.
- A local bike shop – I used to bike with the owner – sold raffle tickets to customers for a bike and that money went to my fund.
The bottom line is that your support team needs to be creative – ANYTHING & EVERY IDEA can work! If you believe in what you are doing and are passionate about the cause then the fundraising will work; but START EARLY!!!
How important has this funding been to you? How has it helped you?
Extremely important! Since I am still on the “list” as I await the transplant, fundraising is an ongoing thing for me. I still have huge expenses from CF and am currently on disability. I can fill out a voucher and submit it to NTAF to be reimbursed for medical bills not covered by insurance. I receive the reimbursement check within ten business days.
How much have you raised?
About $120,000 and growing.
When should someone start a fund?
Once the doctors start talking about transplant, I would start ASAP before you get too sick — and now, with the new allocation system, you may not have enough time prior to transplant if you wait. But fundraising can be done at anytime. NTAF helps patients to raise funds post-transplant as well.
Have you had your transplant yet?
No, I have not been transplanted yet. I started early so I can build up my fund and not have to deal with a lot of financial burdens that arise following transplantation. I think the transplant itself will be stressful enough.
If someone is on disability or governmental assistance, does this money go toward their monthly earnings?
Funds contributed to NTAF are not seen as income to the patient, because funds are disbursed only for medically-related expenses and are administered by NTAF. The money does not belong to a patient, it is held on behalf of a patient in a regionally restricted fund.
What would you suggest to others about getting started?
Call NTAF (1-800-642-8399) and speak to a patient services manager – TODAY!
Jerry Cahill currently volunteers with The Boomer Esiason Foundation. He is passionate about track and field and coaches two high school sports teams. He can be reached at jcahillBEF@aol.com.
