The Nephrotic Syndrome Foundation's Patient Card Project

The Nephrotic Syndrome Foundation, an Alamo based non-profit, serves children diagnosed with Nephrotic Syndrome and their families year round; however, once the threat of COVID-19 became clear, they knew they needed to take immediate action. Families impacted by Nephrotic Syndrome are the exact population most at risk under COVID-19.

For these families, all of whom have children on immune-suppressant medications, the threat of COVID-19 is real. The impact could be devastating. Precautions most people are taking now for the first time, are part of daily life for these kids and families, required simply to operate in society, even without the threat of a pandemic.

Nephrotic Syndrome is a serious and rare auto-immune disease affecting the kidneys, causing them to stop working. There is no known cause and no cure for Nephrotic Syndrome. Treatments are extremely limited and consist of chemotherapy and transplant medications taken for years on end if not a lifetime. Families with a child battling Nephrotic Syndrome are the exact population most at risk with Covid-19.

“Kids and families in this situation are dealing with fear and anxiety as they contemplate the risks and landscape ahead” says Andi Callaway, President and Founder of The Nephrotic Syndrome Foundation. “Most will face quarantine and isolation for months and weeks after restrictions are lifted.”

Founded in 2017 by local mom Andi Callaway, after her own son was diagnosed, The Nephrotic Syndrome Foundation (NSF) aims to bring direct support to this underserved group.
Even facing their own setbacks as the Foundation’s major annual fundraiser ‘Game Day’, was cancelled, NSF began immediately searching for ways to support this group under SIP restrictions. “In this moment, they need support more than ever” says Andi.

Earlier this month, NSF sent personalized cards to over 350 children. Each one included a personalized note written by a NSF volunteer, a coloring page, NSF sticker, 2 pages of Quarantine ideas for kids at home as well as information on NSF’s Virtual Patient Support offerings.

“We are so thankful for this foundation! Never have we been a part of something like this! The love and support you give to our children is immeasurable! We thank you for everything you do!!” – Patient Mom

“Thank you for sending my little warrior a card. He was so thankful he started crying. With him having to stay in and missing his friends he’s been really down. He really needed this.” – Patient Mom

“Oakley was so excited! She wouldn’t put her card down! Little things make such a big difference in times like these. Our whole family was so grateful to see her light up. Thank you SO much to the foundation for the amazing idea!!” – Patient Mom

In addition to providing connection and support, NSF offers 7 programs to support families with a child diagnosed with Nephrotic Syndrome including Backpacks of Hope, Camp NSF, their Thermometer Program, Direct Patient Grants and much more. In addition NSF is expanding their Finding Health Speaker and Peer Group Series to a virtual platform, allowing them to reach patients all across the United States in a new and accessible format. Their first two sessions will feature collaboration with Mindful Life Project on the topic of mindfulness. Mindfulness has tangible benefits for all, but is especially beneficial for those coping with a chronic illness, who deal with stress, anxiety and mood altering medication for any reason and parents and caregivers in this journey. All sessions are offered free of charge for patient families.

To learn more about Nephrotic Syndrome, or to donate in support of these impactful programs, visit www.nephroticsyndromefoundation.org. Any amount is a gift to these families who face a greater need than ever before. To reach us directly or to inquire about additional or more significant partnership opportunities please contact Andi Callaway at andi@nephroticsyndromefoundation.org.