Working to support families, educate our community, and fight Nephrotic Syndrome
FINDING HEALTH
Finding Health is an ongoing series dedicated to the health and well-being of those diagnosed with Nephrotic Syndrome and their caregivers. Sessions focus on topics ranging from managing Nephrotic Syndrome in school, to tools and teachings on mental health, to doctor led, expert speaker sessions on topics relevant to those in this journey.
ALL patients and caregivers welcome at no cost.
Interested in being our 2024 Finding Health Sponsor?
NEXT SESSION:
New Research and Treatment Strategies for Nephrotic Syndrome
Tuesday, April 23 @ 4 pm PST / 7 pm EST
Come sit at the table with four leading Pediatric Nephrologists and Researchers in the Nephrotic Syndrome field as they present their latest research, studies, and / or strategies.
NSF is honored to be joined by Dr. Christine Sethna (Sethna Research Group), Dr. Amar Majmundar (Boston Children’s Hospital), Dr. Gabriel Cara-Fuentes (Nationwide Children's Hospital), and Dr. Matt Sampson (Sampson Lab).
100% FREE & virtual.
PAST SESSIONS
While we do not record all sessions to protect the confidentiality of our patient community,
we will post all information and resources from past sessions on this page for reference.
NEPHROTIC SYNDROME 101
In this session we were joined by Dr. Paul Brakeman, UCSF Pediatric Nephrologist as we discussed Nephrotic Syndrome diagnosis, medications, treatments, labs, how to interpret labs, and more.
Click here for Recorded Meeting
Passcode: E?kPs6Xa
VACCINATIONS AND NEPHROTIC SYNDROME
This session focused on the sensitive but important topic of vaccinations alongside nephrotic syndrome. Co-hosted by Dr. Gia Oh, Dr. Dorey Glenn, Dr. Chia-Shi Wang, Dr. Daniele Gusland, and Dr. Paul Brakeman, this presentation included an overview of vaccines, the recommended timing of vaccines along with the concerns for relapse. In addition to addressing previously submitted questions from the attendees, tips and tricks along with various travel / exposure considerations were discussed. The presentation was followed by an open Q&A.
Click here for Recorded Meeting
Passcode: ZH*tJE8B
WHAT PARENTS NEED TO KNOW
This session included a Peer Team Panel hosted by The NSF Peer Team, young adults and older teams who have experienced life with Nephrotic Syndrome. We were able to hear from this group directly, ask questions, and get insight. Topics included transitioning to middle / high school, new friends, school-life balance, stress, teen life, etc.
BACK TO SCHOOL 2023 : 504 PLANS & NAVIGATING SCHOOL
This series addressed the 504 plan process and navigating school. We shared tips and tools on advocating for kids or teens as they go back to school and need accommodations or support. We reviewed NSF's 504 Plan Toolkit, heard from others who have navigated this slice of life, shared ideas, tools and tips for a smooth return to school and a successful year. Panel included parents, a teacher, and registered RN, school nurse and health educator.
Click here for Recorded Meeting
Passcode: xqDmA$9^
504 Plan Toolkit:
Additional examples may be available upon request - support@nephroticsyndromefoundation.org.
RITUXIMAB 101
Co-hosted by Dr. Susan Massengill and Dr. Deb Gipson, along with Dr. Paul Brakeman, this session provided an overview of Rituximab: Why/how it is used and administered in the pediatric nephrology community, how it works, use of bio-similars / generics, what to know and look out for before and after, and more. Caregivers/Parents had the opportunity to submit questions ahead of time and in the chat for a detailed Q&A time after the presentation.
Click here for Recorded Meeting
BACK TO SCHOOL 2022 - PART 1: 504 PLANS & NAVIGATING SCHOOL
Part 1 of this series addressed the 504 plan process and navigating school. We shared tips and tools on advocating for kids or teens as they go back to school and need accommodations or support. We reviewed NSF's 504 Plan Toolkit, heard from others who have navigated this slice of life, shared ideas, tools and tips for a smooth return to school and a successful year. Panel included parents, a teacher, and registered RN, school nurse and health educator. Parents had the opportunity to connect with others who have kids the same age via breakout.
504 Plan Toolkit:
Additional examples may be available upon request - support@nephroticsyndromefoundation.org.
BACK TO SCHOOL - PART 2: KID & KIDNEY FRIENDLY EATING
Part 2 of this series covered the challenging topic of school lunches, healthy snacks and kidney-friendly products. We were joined by certified kidney dietitian and nutritionist Kellsey Reed of @ckdnutrition. Kellsey covered how to interpret kidney labs, which metrics to watch for optimum kidney health and more. She shared her favorite low sodium products and kidney friendly eating tips, and we got to hear from other parents and caregivers as to what their kids or teens love.
Kellsey's slides from the session are below, as well as a specially designed guide for Kid & Kidney friendly eating with product favorites, images for easy reference and more!
Finding Health - Kidney Friendly Guide
Finding Health - Presentation from Kellsey Reed, RDN, LDN
THE COVID VACCINE & KIDS
Dr. Thomas Tarro, M.D, UCSF pediatric infectious disease specialist, presented on the COVID-19 vaccine, background, alternatives, how they have seen COVID present in pediatric patients and more. Joined by co-host Dr. Paul Brakeman, Ph.D., M.D., one of UCSF’s top pediatric nephrologists, this session was incredibly informative and helpful for those who attended.
MINDFULNESS WITH JG LAROCHETTE (PARTS I & II)
This session addressed the challenges and stress that come with Nephrotic Syndrome and how to manage them. We featured expert-led instruction from JG Larochette from the Mindful Life Project, tools and techniques for managing stress and anger for both children and adults, and content and suggested resources. The session included a peer to peer breakout session for young adults and children with Nephrotic Syndrome and a simultaneous caregiver session for adults
Session Materials:
-
Mindfulness is "Paying attention to your feelings in the present moment, on purpose, without judgement."
-
Feel "without judgement" - Invite ALL feelings in and treat them as friends. Practice naming them.
-
Tip - "Ask a question to activate pre-frontal cortex vs. amygdala (fight or flight part of the brain) response
-
Think "Respond vs. React"
Apps:
-
Click here to download the FREE Mindful Life Project App
-
Headspace – user-friendly, guided meditation for all levels (kids and adults). App offers 3-minute exercises, sleep aids and more. https://www.headspace.com.
Online Resources:
Books:
-
10% Happier , by Dan Harris – entertaining, pop-culture introduction to mindfulness from the perspective of a reporter. The patient family gift for those who attended.
-
Wherever I Go, There You Are , by Jon Kabat-Zinn. – An authentic, yet entry level, read on the world of mindfulness.
MINDFULNESS WITH JG LAROCHETTE (PARTS I & II)
This session addressed the challenges and stress that come with Nephrotic Syndrome and how to manage them. We featured expert-led instruction from JG Larochette from the Mindful Life Project, tools and techniques for managing stress and anger for both children and adults, and content and suggested resources. The session included a peer to peer breakout session for young adults and children with Nephrotic Syndrome and a simultaneous caregiver session for adults
Session Materials:
-
Mindfulness is "Paying attention to your feelings in the present moment, on purpose, without judgement."
-
Feel "without judgement" - Invite ALL feelings in and treat them as friends. Practice naming them.
-
Tip - "Ask a question to activate pre-frontal cortex vs. amygdala (fight or flight part of the brain) response
-
Think "Respond vs. React"
Apps:
-
Click here to download the FREE Mindful Life Project App
-
Headspace – user-friendly, guided meditation for all levels (kids and adults): 3-minute exercises, sleep aids and more - https://www.headspace.com.
Online Resources:
Books:
-
10% Happier , by Dan Harris – entertaining, pop-culture introduction to mindfulness from the perspective of a reporter. The patient family gift for those who attended.
-
Wherever I Go, There You Are, by Jon Kabat-Zinn. – An authentic, yet entry level, read on the world of mindfulness.
NAVIGATING SCHOOL / 504 PLANS
Combined patient community session hosted by Andi Callaway and Lexi Grimes. Ms. Grimes led the youth group peer to peer discussion for kids with Nephrotic Syndrome. Topics ranged from how it feels to talk about Nephrotic Syndrome with peers, to medication struggles and side effects, dietary restrictions and weight issues. A simultaneous session was hosted dedicated to caregivers, focused on how to navigate the reality of Nephrotic Syndrome in school, sports, and social circles.
Resources:
NAVIGATING SCHOOL / 504 PLANS
Combined patient community session hosted by Andi Callaway and Lexi Grimes. Ms. Grimes led the youth group peer to peer discussion for kids with Nephrotic Syndrome. Topics ranged from how it feels to talk about Nephrotic Syndrome with peers, to medication struggles and side effects, dietary restrictions and weight issues. A simultaneous session was hosted dedicated to caregivers, focused on how to navigate the reality of Nephrotic Syndrome in school, sports, and social circles.
Resources:
HEALTHY EATING
This session featured a moderated peer to peer group discussion for kids with Nephrotic Syndrome, with simultaneous caregiver session dedicated to healthy and clean eating for kids and adults. Topics included tips for healthy, anti-inflammatory, low salt product alternatives and where to find them, several whole food based, low salt recipes and cooking demonstrations. Participants each received a gift of a healthy culinary item, recipes, and information.
ALTERNATIVE SCHOOLING OPTIONS
This session addressed alternative options for school. Nephrotic Syndrome brings many challenges for our kids. Many of them may benefit from a non-traditional school environment. There are many alternatives available. In this session, we explored options ranging from homeschooling options, to a hybrid approach, to simply highlighting the benefits of a shortened day. The session included a peer to peer breakout session for young adults and children with Nephrotic Syndrome and a simultaneous caregiver session for adults.
INTEGRATIVE THERAPIES FOR NS
This session explored integrative therapies for treating Nephrotic Syndrome that can accompany traditional medicine and treatments. Dr. Elisa Song, from Whole Family Wellness was the featured speaker. Session included information on what supplements can aid in the treatment of Nephrotic Syndrome, as well as techniques for whole child (and caregiver) wellness.
Click here for Dr. Song's presentation
TRANSITIONING TO COLLEGE WITH NS
Transitioning to college is a challenge. For those dealing with Nephrotic Syndrome, it can be additionally stressful. This session explored the transition to college / independent life with Nephrotic Syndrome. We heard from families who have navigated this milestone themselves and explored resources and tools on the topic. Suzann Cowing, one of the East Bay's leading admissions advisors and founder of Advance College Counseling, shared valuable information on the college admissions process and what to know when your child has a 504 plan in place. If you missed this session but would like more info on any of the topics or contact information for any of our attendees or presenters, please reach out to us at findinghealth@nephroticsyndromefoundation.org.
Online Resources:
-
Managing Chronic Illness in College, Suzanne Shaffer
-
Wrights Law - https://www.wrightslaw.com/info/fape.index.htm
-
Requesting ACT Accommodations - Arbor Bridge Guide
2020 FAMILY BOWLING SERIES KICKOFF
Northern California families gathered for an afternoon of fun family bowling to kick off 2020. We gathered at Danville Bowl, relaxed and enjoyed our amazing community of families.
Click here for pictures.
GIFT OF GRATITUDE
Gratitude is not a natural ability for many of us, and can be especially hard for those with Nephrotic Syndrome. Through this session we introduced that concept, and nurtured it with a fun, interactive activity and a lasting gift for your child! The Nephrotic Syndrome Foundation partnered with “The Gift of Being Grateful”, to provide an opportunity for young warriors battling Nephrotic Syndrome to create their own Gratitude Box! To kick off this kid-focused session, we heard from Dr. Ryan Lazarus, an international speaker and owner of Lazarus Chiropractic Inc. who shared with us a few words on the importance of gratitude. He and his daughter Cienna, led attendees in a step by step tutorial to customize, decorate and use their own Gratitude Box! All supplies were mailed to registered participants in advance of the session. NSF provided materials for each patient and one additional family member (free of charge).