In October of 2021, our daughter, Amal, was diagnosed with Nephrotic Syndrome associated with minimal change disease just at the age of 2. She has been on steroids as well as an immunosuppressant medication ever since to ultimately get her into remission and keep her there.
She is our little warrior! She helped us realize the power of prayer and the importance of having faith in God.
Her medical journey has brought great changes to our lives as well as Amal's life, and we continue to stay strong for her. We, unfortunately, did not have enough knowledge about this idiopathic disease, so we came across this amazing Nephrotic Syndrome Foundation that strives to give hope, resources, research, as well as help find a cure for children like Amal.
I am starting this fundraiser in the honor of my daughter on National Kidney Month.
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 and 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.
Our Work: NSF offers eight programs to uphold our mission and support children diagnosed with this disease and their families. Those programs include:
- Backpacks of Hope - A backpack of comfort items and medical supplies provided to newly diagnosed patients or those who have been battling in this fight without support (each valued at over $300).
- NSF’s Finding Health Series - An ongoing series offering content, education and wellness segments, sessions and seminars on topics related to the NS journey.
- NSF’s Peer Team - A group of older teens and young adults with NS who support younger patients in their journey.
- Thermometer Program - A hospital-grade thermometer provided to patient families ($300+ value).
- Camp NSF - An annual camp, 100% free, for patients, siblings & families that takes place in Livermore, CA.
- Direct Patient Grants - Support for costs related to caring for a child with NS.
- Little Angels - An unsolicited care package program for young warriors.
- Podcast - Inspirational and authentic stories of warriors living with Nephrotic Syndrome.
Thank you for choosing to be the light for those battling Nephrotic Syndrome.