THE NEPHROTIC SYNDROME FOUNDATION: WE HOPE

by The Nephrotic Syndrome Foundation

JoAnn Egan

In February 2021, at age 3, River woke up with swelling around his eyes which progressively spread throughout his body. He was sent to the ER and diagnosed with Nephrotic Syndrome. He began a 12-week steroid treatment and since then has relapsed three times. He is now on steroids along with an immunosuppressant drug in hopes of achieving and remaining in remission.
This whole experience has put things into perspective for us when it comes to what is important in life. God continues to show us how little control we have but that faith will pull us through. We are so blessed to have found NSF, who provide support, resources, and helpful guidance as we learn to navigate our new “normal.“ We have a long road ahead and are astonished by the strength and courage a now

4-year-old can possess.

I started this campaign in honor of my grandson, River, to help find a cure and provide support to all NS families. Please help us reach our goal by December 31.

Thank you for taking the time to read about River’s journey, which has only just begun; and I pray that you join us in this fight.

Our Mission: The Nephrotic Syndrome Foundation is a non-profit organization supporting those diagnosed with Nephrotic Syndrome, their families and the ongoing search for a cure.

Background: Nephrotic Syndrome is a serious and rare auto-immune disease that attacks the kidneys causing them to shut down. There is no known cause or cure. Treatments are extremely limited and consist primarily of steroids, cancer, and transplant medications. Many patients are children who spend a major part of their life in and out of the hospital, trying to find a treatment that keeps them in remission while managing the side effects. Receiving this diagnosis is life-changing. It can take the breath out of any parent or child who finds themselves in this situation. Our goal at NSF is to meet each family and child in these tough times and lift each one up as best we can by providing financial and emotional support to help them weather the times to better health, acceptance, and adjustment.