Jett Williams-

Dear Family and Friends,

I hope this letter find you enjoying the closing of a healthy and productive year. You may or may not know that our oldest son, Jett, was diagnosed last spring with a rare kidney disease generally known as Nephrotic Syndrome. Since that time, Jody and I have spent a lot of time educating ourselves and consulting with Jett’s renal doctor about the kidney and this disease. Nephrotic Syndrome occurs when the filters in the kidney malfunction and protein that is needed by the body is instead lost through the urine. Edema (swelling of the stomach, eyes, and legs) occurs, and if left untreated can be life threatening.

After having a kidney biopsy, Jett was diagnosed with Minimal Change Nephrotic Syndrome. This means that although the kidney filters are malfunctioning, there is currently no scarring of the kidney filters. He is receiving steroid treatment in addition to small doses of a chemotherapy drug called cytoxan. Although he has experienced many relapses, he is currently responding well. His long-term prognosis is good and our hope is that he will outgrow this disease as he approaches adulthood.

There is no known cause or cure for Nephrotic Syndrome. Many of the children who do not respond well to treatment discover scarring of the kidney filtering function that can lead to kidney failure, daily dialysis or a transplant. This is called FSGS Nephrotic Syndrome. The latest federal reports indicate as least 2,000 kidney failure cases annually due to FSGS. This does not include the number of FSGS patients who have not lost their kidney.

Most people could not tell you what it means to have Nephrotic Syndrome. In order that more medical and research dollars can be allocated to determine the cause and cure for FSGS and Nephrotic Syndrome, we need to increase public awareness. That is why I have decided to participate in Letters for Life campaign, a fundraising effortwhich supports an organization called the NephCure Foundation.

NephCure is made up of patients, their families and friends, researchers, physicians and other healthcare professionals who have joined forces to create awareness and generate funding for research. The NephCure Foundation is the only organization in the country whose sole mission is to find the cause and cure of Nephrotic Syndrome and to improve the treatment of patients with the disease. They have been very active in 2006 by continuing to generate awareness, facilitate free patient education seminars, and support several research initiatives. The directors of this organization are parents with children who have this disease. Since they are personally affected, they are serious about putting any funds raised directly into the research and not to administrative expenses.

If it is within your means, please consider a charitable gift to NephCure to help us make a difference for Jett and all the other children and families affected by Nephrotic Syndrome. NephCure is a tax-exempt public charity and your contribution will be tax deductible. Click here to make your donation. If you would like to designate it in honor of Jett, we would be honored.

Our sincerest thanks and best regards,

Jo Ann Williams
Mother of Jett, 3 yrs - MCNS and Dash