Kellen Jumper Warner was diagnosed with a rare kidney disease called IGA Nephropathy with Crescents when he was 11 years old. Kellen has had several flare ups between the ages of 11 and 16 (steroids, chemo, several medications to stop him from going into renal failure). There were several doctors who stated that Kellen would need a transplant by the age of 18 years old. Kellen worked very hard to maintain a strict kidney diet, exercised and stayed active, but overall has an amazing positive attitude to living with kidney disease and has been in remission since he was 16 years old. Kellen is now 21 and a senior at Penn State University and is a big advocate in the world of kidney disease.

Kellen wrote the following for a school assignment that was the beginning of establishing the KAIGAN FOUNDATION: I will explain how something has changed in my life. Also, how this event shaped the way I look at things in a different way. The thing that has changed in my life is I was diagnosed with a kidney disease. My family is worried and now they’re getting the hang of it. It is rare and only hundreds of people have it, not a lot. I’m very sad and hope I can live through it.

The disease changed my life because I’ll have it for the rest of my life unless they find a cure for it. I can’t have certain foods or drinks. Anything that has high sodium or sugar I can’t have. In November or December, I will get another biopsy. I’m getting another one, because they need to see if the medicine I’m taking is working. I hope I will not have this for the rest of my life.

The positive thing about the disease is I can still play what I love, sports. The day after my first biopsy, I asked the doctor, “Will I be able to play sports.” He said, “Yes.” That yes gave me a sigh of relief. It was like, “Boom!” Everything would be back together besides my kidneys. I can still have some of the food and drinks I love, just not a lot of them.

It is discomforting when I see my friends, other people, or commercials when they show the foods and drinks, I can’t have. I’m not telling everyone to join and do the same thing as me, but honestly, “I wish this never would have happened to me.”

I feel emotional, like I’m about to cry. It’s something my family and I didn’t see coming. So far, I have lived through it, and I’m doing pretty good they think. I just hope everyone can help me through this. This disease is something that has changed my life. My family will help me. I especially know my friends will help me. I know they will because my friends and family care for me. They don’t just leave me alone. They want to see what’s going on. I think I’ll live through it and I hope I don’t have it for the rest of my life.

Hello, my name is Tracy Ciarimboli, and my kidney journey began back in 1983 when I was diagnosed with two genetic kidney diseases at the age of 14. I received both a recessive gene from my dad who had Alport Syndrome and dominant gene from my mom who had Polycystic Kidney Disease (PKD). Alport caused nephritis (inflammation of the kidneys) along with nerve deafness in my left ear, plus it can also cause eye abnormalities. PKD comes from a mutated gene which causes the kidneys to develop clusters of cysts within and on the kidneys. Both my parents received transplants but sadly lost their battles to infection, as the immunosuppressants transplant patients must take to prevent rejection, in turn compromise the immune system. My dad passed away at age 26, when I was only seven years old, and then when I was 30, I lost my mom at the age of 48.

I married and had my daughter Elizabeth in 1990. She was premature due to a combination of my kidney disease and pre-eclampsia, and she also inherited PKD but was overall healthy otherwise.

For the most part I had been living a pretty normal life, getting routine bloodwork and checkups, until 2000 when I remarried. Upon returning from our honeymoon, I found out I was in renal failure. Dialysis started immediately and lasted for 6 months. Being an LPN, I was devastated when I was told it would be in my best interest to start planning for another career path. Since my focus was on geriatric care, I was now going to have physical and lifting limitations, but more importantly it would not be wise to be in such environments with my compromised immune system. Thankfully my mother-in-law Bonnie turned out to be a match, and on March 6, 2001, I received my first kidney transplant. After 11 years of treatment-free life, in 2011 I went into sudden rejection. I was hospitalized for nine days where I had to receive intravenous infusion therapy to lower the number of organ-rejecting antibodies, along with plasma exchange treatments to try to stop the rejection, but I lost my mother-in-law’s gift. Then on May 5, 2012, after enduring another eight months of dialysis, I received my second transplant. It was a double cadaver kidney transplant from a six-month-old baby.

I know it sounds sad, but I would rather look at both of my transplants as true blessings. I will be forever grateful to my donors for their wonderful gifts, as well as my doctors at Penn Medicine in Philadelphia where both transplants were performed.

Today I am 54 years old and enjoying a healthy treatment-free life of 12 years and counting. Though I must take several medications and see my Nephrologist every six months for the rest of my life, it is a small price to pay. Work and family fill my life now, as my beautiful first grandchild Nolan recently turned one. He brings my husband Steve and I a new constant joy and makes me proud to be called Nanny. I also work as a full-time paralegal and still maintain my license for my first love of nursing.

In closing, I am a strong advocate for organ donation, living or cadavers as I would not be here enjoying life without it. Organ donation is the ultimate gift of life, and I am a proud registered donor. I also want to thank the KAIGAN Foundation for choosing me as their 2024 Kidney Ambassador and allowing me to share my story. God Bless Kellen and the members of the KAIGAN Foundation for the support and resources they provide to everyone who is touched by kidney disease!

Correale's Grove
250 Deep Hole Rd.
Drums, PA 18222

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