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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, opportunities for one-on-one chats, 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, many Peer Team Leads are available for one-on-one chats with patients or caregivers.  

 

Peer Team Membership - We offer an array of impactful ways for older patients to get involved. Reach us below to join the family!

UPCOMING PEER TEAM EVENTS

Connect, share and hear from others who walk the path of life with Nephrotic Syndrome. 

Join us for 

CONNECT

A Peer Team Session for Young Patients with Nephrotic Syndrome

Saturday October 3rd, 2020

10am PST

Peer Team Leads share their experiences and foster connection for youth in our NS community.

What topics would you like covered?

Email suggestions to

nsfpeerteam@nephroticsyndromefoundation.org

PEER TEAM LEADS

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NATALIE ROBINSON

Seattle, WA

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!

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JEREMY BEDIG

Oakland, CA

Hi, I'm Jeremy! I was Diagnosed with fast acting variant FSGS when I was 14. Over the next two years I experienced a number of different treatments from IV chemotherapy and steroids to prograf to try to send the disease into remission. After that I had a double nephrectomy and went on dialysis for six months before I received my first kidney transplant. That kidney worked for almost six years before it failed and I went back on dialysis for about three and a half years until I got my second transplant at 24 from a family member Jen. Through all of this I was so fortunate to have an amazing support system who nourished and energized me.

 

Through all of that I never stopped following my passions. I played soccer all through high school and still play to this day. Now, I am a full time soccer coach coaching for Mustang Soccer Club, Diablo Valley College, and Contra Costa FC. 

 

Now at 27, my family and I have had time to reflect on our journey. In our most difficult moments where we had to make decisions with no clear right answer, we never felt as though we had an experienced community who had been through this before to support us. Now it is a passion of mine to make the lives easier for families who are impacted with Nephrotic Syndrome. I am so excited to be a part of the Peer Team and I look forward to supporting The Nephrotic Syndrome Foundation as best I can.

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RIVERS RUBIE

Bristow, OK

Hi, I'm Rivers! I just graduated from Central Tech, and am studying to become a phlebotomist and attend nursing school. Not only am I passionate about health, but I also LOVE animals! I get my love for animals from my family who runs an Animal Sanctuary in Oklahoma. I also love the ocean and the beach!

In 2005, when I was 3 years old, I was diagnosed with Nephrotic Syndrome with Minimal Change. I have been in remission for over 21 months, and love to use my experiences and knowledge on health to education others about Nephrotic Syndrome. I am excited to become a mentor to others going through the same journey and hope I can be an inspiration to other patients that they can accomplish anything they put their mind to!

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MIKAELA RADOCHIA

Boston, MA

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. 

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JASMINE SHEN

United Kingdom

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.

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CYNTHIA NIEMEYER

Taos, NM

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

MEET OUR PEER TEAM MEMBERS AND COLLABORATORS

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MEET JON

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,

Go Be More,

designed to inspire us to chase our dreams while fighting to overcome the challenges life gives us.

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JOIN 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. 

 

NSF Peer Team Interest Form

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