Latest News

Warhaftig Family Goes Above and Beyond in Fight for Son’s Battle Against Kidney Disease

Don’t ever think that one person can’t make a difference. Just look at Elise Warhaftig, she’ll show you that one person can do wonderful things.

Elise’s 11-year-old-son son, Andrew, suffers from the kidney disease FSGS. He’s already had a kidney transplant at age seven because of the disease (his dad, Jeremy, was the donor), but is back on dialysis because the disease returned just days after the transplant.

Many people would just give up fighting, deal with the hand they were dealt and move on.

Not Elise. Not her family. They take charge.

Elise has raised over $125,000 through the years fundraising and running in the Falmouth Road Race. The money she raises as a Nephlete helps The NephCure Foundation’s mission of funding research and education into FSGS and the related Nephrotic Syndrome.

“I have to do something,” said Elise, who ran the seven-mile 2012 Falmouth Road Race in a time of 57 minutes, 30 seconds and raised almost $40,000. “We’re talking about my child and his well-being. I’m certain others would do the same for their child.”

While Elise thinks she is just like everyone else, she’s not. In addition to her fundraising, she recruits friends and family to also fundraise through the Falmouth Road Race. Those individuals this year included Allison Arnone, Luke Dodge, Margaret Fawley, Heather Harris, Tina Hartnett and Loren and Rick Winters. 

Elise and her family’s fight doesn’t end with fundraising. She recently presented her family’s story to representatives at Pfizer so that they could put faces and names against the disease they are trying to fight.

Pfizer’s Research Director Nick Pullen had the idea to get a patient family to speak after seeing NephCure Ambassador Alonzo Mourning speak to researchers on behalf of the Foundation at the International Podocyte Conference in Miami earlier this year.

“Elise is a great woman,” said Pullen. “She is such an inspiration.”

Mourning spoke to the researchers about the importance of finding a cure of FSGS, a disease he suffered from before having a kidney transplant. After receiving a standing ovation from the doctors and researchers, Mourning said, “This is wrong. I should be giving you the standing ovation.”

There aren’t a lot of other families out there like the Warhaftigs who take charge and fight along with other NephCure families. NephCure puts an emphasis on finding families dealing with FSGS and Nephrotic Syndrome in an effort to help them take control of their own health care needs.

“It’s amazing what an influence one family can have,” said NephCure Executive Director Henry Brehm. “We’ve had families visit researchers, doctors and political figures and each time some kind of impact is made. While we are able to get some families engaged, the problem is we always need more. The impact a family has when they speak with another family is immeasurable.  That support is something these families need. Then, to have all these families come together and speak to researchers, politicians and the pharmaceutical companies is what is going to blast us forward into an age of real progress in the fight against FSGS and Nephrotic Syndrome.”

FSGS and Nephrotic Syndrome are rare diseases. Only 8,000 people are diagnosed with the diseases each year. As a result of such a low number, patients often feel all alone in dealing with the disease. Also, the number of diagnosis is not enough for major pharmaceutical companies to put significant funding behind drug development.

NephCure is out to change both. When you get connected with NephCure, you meet other families dealing with similar situations and you can talk through your issues with someone who has been through it. Additionally, NephCure is connecting research with pharmaceutical companies so more can be learned about these diseases in order to find a cure.

Learn how you can get involved, e-mail NephCure's Patient Advocate Uju Ogbuawa at uogbuawa@nephcure.org to get started. </