What is Restrictive Cardiomyopathy?
Will a heart transplant “cure” Billy?
When will Billy have a transplant?
If Billy is covered by insurance why are other funds needed?
How can I donate?
What is The National Transplant Assistance Fund (NTAF)?
How do I know donations to NTAF will be spent on Billy’s
transplant needs?
Are my donations tax deductible?
Can I get a receipt for my donation?
Are there other needs besides financial?
How can I become an organ donor?

What is Restrictive Cardiomyopathy?
Restrictive Cardiomyopathy refers to a group of disorders in which the heart chambers are unable to fill with blood properly because of stiffness of the heart. In restrictive cardiomyopathy, the heart is normal in size or only slightly enlarged, but it cannot relax normally during diastole (that is, the time between heartbeats in which the blood returns from the body to the heart).
Later in the disease, the heart may not pump blood efficiently. The abnormal heart function can affect the lungs, liver, and other body systems. Restrictive cardiomyopathy may affect either or both ventricles and may or may not be associated with a disease of the heart muscle.

Will a heart transplant “cure” Billy?
A heart transplant is the only chance of Billy being "cured". Obviously there are a lot of risk involved in a transplant, but that is the only course of treatment that will give him a chance at reasonable quality of life for an extended length of time.

When will Billy have a transplant?
That is a real unknown. There a lot of factors that determine the order in which patients are prioritized to receive donated organs. Billy is in the next to highest tier on the transplant waiting list. While there is no guarantee, the wait at this level is usually less than 6 months. We are hopeful that he will receive his transplant before the summer of 2005 is over.

If Billy is covered by insurance why are other funds needed?
Thankfully Billy's insurance will cover the vast majority of the $300,000 or more that the transplant will cost. However, there are a number of hidden or out of pocket expenses that are not covered by insurance and some of these cost will continue for the rest of his life after transplant. Initially they will be required to relocate to the Birmingham area for 8 to 12 weeks as he recovers from the transplant surgery. He will be required to be within 20 minutes of the hospital during that time which means an efficiency apartment will have to be rented during that time. Also there are numerous post transplant test and procedures that will have co-pays, anti-rejection drugs ($12,000 to $30,000 a year) that will have co-pays and the potential for home healthcare and other related cost that will not be completely covered by his insurance. These cost combined with the fact that Billy has had to leave his full time job and go on Social Security all add up to a situation that could become a serious financial problem if some assistance is not available to him.

How can I donate?
Billy has signed up with the National Transplant Assistance Fund (NTAF). NTAF is a 501(c)(3) nonprofit providing fundraising assistance to transplant and catastrophic injury patients. They can receive tax deductible donations on his behalf and then disperse those fund to him in the form of reimbursements for expenses he has related to the transplant. These donations can be received by check or credit card. Please visit the "How to Donate Page" page for more info.

What is The National Transplant Assistance Fund (NTAF)?
NTAF was started by Dr. and Mrs. Jack Kolff in 1983 after Dr. Kolff had established the heart transplant program at Temple University Hospital. At that time, heart transplantation was still considered experimental in nature and insurance coverage was not always available for the procedure. Many patients were being denied transplants because they lacked financial means. Dr. and Mrs. Kolff had a vision that all people should be able to receive life-saving organ transplants without regard to their financial situations. NTAF is a 501(c)(3) nonprofit that provides fundraising assistance to transplant and catastrophic injury patients. They help patients by assisting them with their fundraising, accepting tax deductible donation on their behalf and dispersing those funds through reimbursements of documented expenses related to their transplant. They are independently audited regularly and have been evaluated and highly ranked by several Charity watchdog groups. For more information contact them at (800) 642-8399 or visit www.transplantfund.org .

How do I know donations to NTAF will be spent on Billy’s transplant needs?
All donations on Billy's behalf are held in a regional fund. NTAF requires all patients to submit proof of any expenses for which they seek reimbursement. These payments are not made until that proof has been received and verified by NTAF. If the time comes when Billy does not need the assistance of NTAF then the left over funds will be used to help other patients with similar needs. However Billy will be able to use these funds for the rest of his life and NTAF will even pay up to $5,000 toward funeral expenses if that were to become a need. NTAF keeps 4% of funds raised to cover their overhead, the rest is set aside exclusively for Billy. These processes are independently audited regularly.

Are my donations tax deductible?
Contributions made to NTAF are tax-deductible to the extent of the law. NTAF is a 501(c)(3) nonprofit organization.

Can I get a receipt for my donation?
You will receive a receipt for tax purposes for your donation to the NTAF fund for donations over $250, or if requested by the contributor of a lesser amount. Charitable donations under $250 do not require a receipt.

Are there other needs besides financial?
Yes, most importantly are the prayers of Godly people. We covet your prayers more than anything. Billy's wife Joanne is also in need of donated sick leave. If you are a State of Alabama employee and would like to donate sick leave then please contact us. You can visit our Needs page for more info.

How can I become an organ donor?
There are many ways to make your desire to be an organ donor known. The best way is to express this desire to your loved ones so that they will know your wishes in the event a decision has to be made on your behalf. Also, please visit either http://www.transplantfund.org/BecomeDonor/overview.cfm or http://www.donatelife.net/ for more info.

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March 24, 2005