NSF's Peer Team is a group of older teens / young adults, here to support younger patients and teens with Nephrotic Syndrome. They are here to support, share and talk with you / your child as you travel this journey. Look for virtual peer groups, topic talks, "pen-pal" connections, meet-ups, activities, and more.
Peer Team Leads are a small group of inspirational individuals who run our Peer Team program. All at various stages of their journey with Nephrotic Syndrome, these individuals are making huge waves in the world!
Peer Team Membership - We offer an array of impactful ways for older patients to get involved. Reach us below to join the family!
NSF's Peer Connections - Even the youngest patients can contribute! NSF's Connections program gives patients 13 and under an opportunity to give back and support others while connecting with others who walk the same path. Join us for card making, activities and more,
UPCOMING PEER TEAM EVENTS
Peer CONNECTIONS Event - For Patients and siblings 13 & Under
June 11th at 10am PST
Join us for our CONNECTIONS event “Campfire Treats”!
We are going to be making edible campfires as a little summer treat and talking about our favorite campfire stories and summer activities!
PEER TEAM LEADS
Ann Arbor, MI
Hi, I'm Nicki! In February 2019, at age 21, I was diagnosed with Nephrotic Syndrome. I fall somewhere in between minimal change disease and IgM nephropathy. For treatment I've tried prednisone, tacrolimus, CellCept and Rituxan; and finally landed on cyclosporine as the medication that's been supporting me in managing my symptoms and living my life to the fullest!
My Nephrotic Syndrome journey has led me to develop a deep passion for holistic wellness. I've made great leaps in healing through eating a plant-diverse diet, engaging in daily joyful movement and self-care activities, working with a life coach and functional practitioner, prioritizing sleep and taking part in/giving back to the Nephrotic Syndrome and wellness communities. I credit this lifestyle for allowing me, despite my diagnosis, to continue pursuing my passions and hobbies: dressage (horseback riding), writing, POP Pilates, hiking, candle making and cooking.
As an NSF Peer Team Lead, it fills my heart with joy and gratitude to have the opportunity to support patients and families as they navigate this journey. We're all in this together, and I look forward to meeting you!
Hi, I'm Mikaela! In January of 2020, I was diagnosed with Nephrotic Syndrome. I was 16 years old. It began with facial and leg edema that I assumed was holiday weight gain. After a trip to my pediatrician and the pediatric emergency room, we got a confirmed diagnosed of Nephrotic Syndrome and I was admitted to the hospital for the first time. I was discharged only a few days later with a prescription of prednisone, I later found out I was steroid resistant. My incredible team of doctors worked hard to manage the extreme edema I was experiencing. This led to acute kidney injury that needed to heal before we could proceed with a new prescription of Tacrolimus. Since January of this year I’ve had 5 separate inpatient stays ranging from 3 days to a month. In March we completed a kidney biopsy to figure out the cause. The results of the biopsy were Minimal Change Disease. Now, five months after the original diagnosis I am slowing entering remission.
Outside of the hospital, I am a junior at a technical and agricultural high school studying Equine Science heading into my senior year! I volunteer at a local equine rescue to help rehabilitate, retrain and rehome local horses in need. I was a competitive gymnast up until I was 14, when I gave up the sport to focus on horses. At home, I have a younger brother and a dog named Oreo. I'm passionate about mental health, advocating for yourself as a patient and can't wait to help others going through this journey know they are not alone.
Hi, I'm Michelle! My journey began July 2020, just two weeks before my flight to University of Richmond. After several blood works and a kidney biopsy during my 10-day hospitalization, I was diagnosed with Nephrotic Syndrome (NS) and Minimal Change Disease (MCD). After many other treatment trials that resulted in hospitalization and anaphylaxis, I found a medication that kept me stable enough to move states for school, but not enough for me to reach remission.
My condition did not prevent me from continuing my academics. Although my family suggested I defer, I continued through my first semester of college virtually, communicated with the school dean and professors, and finished with a 3.5 GPA. I learned that despite experiencing a global pandemic, grieving for my lost family members, and even dealing with my own incurable disease, I was resilient enough to keep going and nothing can stop me.
I know my story is not the only one. Being hospitalized in a pediatric hospital made me realize that if I am scared about the uncertainty of my future due to this life-changing diagnosis, then I bet other patients and their loved ones must also be worried. I aspire to attend medical school to become like the doctors who took care of me and served as role models that made medical school seem possible. But most importantly, I aspire to become a physician to directly impact the lives of patients with a difficult diagnosis by researching for better treatments and providing them hope as someone who can empathize with them. I also enjoy reading/watching sci-if/dystopian novels/ shows/movies. I do also play the violin or video games.
Hi, I’m Cynthia! I’m 27 years old and a proud Fightin’ Texas Aggie and a civil engineer. I was diagnosed with Nephrotic Sydrome when I was 2 years old and actively treated with prednisone, cellcept, and cytoxan for 17 years until I was 19 years old. Nick-named “Miss Perky” by family, friends, and my nephrologist team at UCLA, I try to still embody this optimistic mindset.
As an adult, I’m passionate about fitness and creating an athletic lifestyle. On any given day, you can catch me on my Peloton, completing a HIIT workout, or hiking a new mountain peak. I’m also deeply passionate about world affairs and will be visiting my 7th continent in January 2021! Growing up, Nephrotic Syndrome was part of my daily life and I know the struggles and sacrifices that many patients experience. I look forward to connecting with you and creating strength through community
Hi, I'm Natalie! I grew up in Los Angeles, CA, graduated from the University of Michigan in 2011 (Go Blue!), and received my Masters of Social Work from USC in 2018. Along with my partner, Jason, our dog, Ash, and our cat, Ellie, I currently live in Seattle, where I’m working towards becoming a licensed therapist. Most of the time you can find me kayaking on Lake Union or in the kitchen learning new recipes.
At 2 years old I was diagnosed with Nephrotic Syndrome. Like so many other children with the same diagnosis, my childhood was a juggling act of hospital stays, medication, side-effects, birthday parties, sleepovers, and class field trips. It was rare that I truly felt like myself. But thanks to my amazing support system I always had inspiration to stay positive! For the last 20 years, however, I have really missed making a connection with others living with Nephrotic Syndrome. This was especially true two and a half years ago, on my 25th birthday, when I relapsed for the first time in four years. A community is a powerful thing and I believe that through this one, we can all learn new ways to live life to the fullest while embracing the everyday challenges. Thank you all for sharing your stories!
Hi, I'm Jasmine! I have minimal change disease and was diagnosed in May 2016. I am very excited to be a part of The Nephrotic Syndrome Foundation's new Mentor Team! I am a performer and since graduating from Bird College UK with a BA in professional dance and musical theatre I have gone on to do my first professional show; SIX The Musical. I am passionate about spreading awareness about NS and also my love for the performing arts. I know how tough the journey is with nephrotic syndrome and I am looking forward to sharing my story with you all through the NSF Instagram page but also my YouTube channel (jasmines journey) in which I started in 2018 where I share my thoughts, opinions and personal experiences about nephrotic syndrome. My goal is to help others who are going through the same hardships that nephrotic syndrome brings.
Hi, I'm Natalie! I was diagnosed with Nephrotic Syndrome in 2013 at the age of 13. After undergoing prednisone therapy and a biopsy, the treatment that helped me reach remission was tacrolimus, which I took for five years. I have been in remission since 2017 and am extremely grateful for my family and the doctors who have been there for me every step of the way in my Nephrotic Syndrome journey.
At 22 years old I hold a degree in liberal arts from Delaware County Community College and currently attend Harcum College studying graphic design. Outside of school I works in an aftercare program for elementary school students. I is super excited to be a part of the NSF Peer Team!
Hi, I'm Rhea! I am from a small, one-stoplight farm town in Indiana where I live with my husband and three dogs. I was diagnosed with membranous glomerulonephritis in 2020 and remained a true warrior as I endured lengthy hospital visits and health complications that culminated in my diagnosis. Despite this difficult journey, I embody a positive mindset and is try to be a light and inspiration to all. I also consider myself a self-starter—I run a tree service business with my partner and am an accomplished powerlifter. At age 22, I have achieved a partial remission through steriods, rituxan and intentional lifestyle.
NSF looks forward to all the amazing energy Rhea will bring to our Peer Team!
MEET OUR PEER TEAM MEMBERS AND COLLABORATORS
Jon Rankin is an Olympic level runner, one of the world’s fastest mile runners, inspirational speaker, incredible human, AND FSGS Warrior. We are delighted to share with you Jon's special message to our NSF Community.
Jon also runs the apparel company,
designed to inspire us to chase our dreams while fighting to overcome the challenges life gives us.
NSF's Peer Team is for young adult patients, ages 14 years and up, who want to get involved in actively and positively giving back to younger patients who share
the journey with Nephrotic Syndrome.
Under 14 years old? Join our Peer Connections program for younger patients!