Finding Health is an ongoing series dedicated to the health and well-being of those diagnosed with Nephrotic Syndrome and their caregivers. Sessions are offered every other month and focus on topics ranging from healthy eating, managing Nephrotic Syndrome in school, to tools and teachings on mental health.
Sessions include a patient-led peer-to-peer gathering where kids and young adults are invited to discuss challenges, emotions, and tools used in navigating their diagnosis. While young patients gather, we offer an adult component focused on supporting our kids, ourselves and each other as caregivers in this journey.
Sessions are held primarily in Northern California, however, ALL patients and caregivers welcome at no cost. Upcoming sessions and past session info below.
"Navigating School / 504 Plans" - Session 1
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.
The following examples and documents were featured:
"Healthy Eating" - Session 2
Session 2 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.
The following recipes were featured:
"Mindfulness" - Session 3
Session 3 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.
The following Mindfulness resources were offered by our expert at Session 3:
Headspace – user-friendly, guided meditation for all levels (kids and adults). App offers 3-minute exercises, sleep aids and more. https://www.headspace.com.
Insight Bell Timer - https://insighttimer.com
Go Noodle -https://www.gonoodle.com
Mindful Life Project’s Mindful Site -http://www.mindfullifeproject.org
10% Happier , by Dan Harris – an entertaining, best-selling 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.
"Alternative Schooling Options" - Session 4
Session 4 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" - Session 5
Session 5 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.
"Transitioning to College with NS" - Session 6
Transitioning to college is a challenge. For those dealing with Nephrotic Syndrome, it can be additionally stressful. Session 6 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 firstname.lastname@example.org.
The following materials and documents were featured:
Managing Chronic Illness in College, Suzanne Shaffer - https://www.collegiateparent.com/wellness/managing-chronic-illness-in-college/
Accessing Disability Services in College - https://thinkcollege.net/think-college-learn/accessing-disability-services/accessing-disability-services-office-roles
FAPE – Free and Appropriate Public Education Act - https://www.understood.org/en/school-learning/your-childs-rights/basics-about-childs-rights/at-a-glance-free-and-appropriate-public-education
Requesting ACT Accomodations - Arbor Bridge Guide