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.

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Learn More!

Thank you to all our wonderful NSF community members who assisted in the last minute change with Camp NSF this year. Due to an emergency directive issued by East Bay Regional Parks we unfortunately had to cancel Camp NSF for these dates. We hosted those warriors and their families who were already in town at our founders house for a special time filled with face painting, s'mores, water balloons and more. Thank you to everyone for their flexibility and understanding - we look forward to seeing you at camp in the future. 

The Shields Family hosted their Annual Joshua's Journey Car Show to raise awareness for Nephrotic Syndrome, a rare kidney condition that affects Joshua. All of the proceeds from this important event went to the Nephrotic Syndrome Foundation to help continue their mission to support kids and families affected by this Nephrotic Syndrome. Thank you to those who supported Joshua's Journey and The Nephrotic Syndrome Foundation! For more info or to inquire about sponsorship opportunities or in-kind donations for next year's event, contactTara Shields at lifelovingrn@gmail.com. 

Thank you to everyone who supported the 3rd Annual Bourbon Brews & BBQ Festival in Shepherdsville City Park, Kentucky.

Attendees we able to shop local vendors, hangout in the beer garden and sit back and enjoy the live music! There was a waterslide, dry bounce house, additional gaming activities., Corn hole tournament, and BBQ Contest! 100% of the proceeds from this year’s festival were donated to The Nephrotic Syndrome Foundation.

For information on future events contact thefeltsfamilyfoundation@gmail.com.

Start of Summer Fun" Crafts & Fun! NSF's CONNECTIONS Program is an opportunity for young Nephrotic Syndrome warriors, 13 years and younger, who have a desire to support others navigating Nephrotic Syndrome, and who would like to be part of a community for support as well. Siblings 13 years and younger, are also welcome!

We met virtually with our community to discuss ways to get involved with NSF this Summer. We talked particularly around the theme of a SUMMER SPLASH, our Summer fundraising initiative which encourages our community members to get involved through lemonade stands, bake sales, and other activities. 

Learn More & Get Involved!

Thank you to everyone you joined us and supported Day on the Green 2023! This event featured an 18-hole golf tournament at Diablo Country Club filled with fun and followed by an outdoor cocktail reception and awards ceremony where we continued the festivities in support of those in this battle. Plus enjoyed a silent and live auction, raffle and MORE! 100% of the proceeds benefited children battling Nephrotic Syndrome and their families. 

Event Photos!
Reception Photos (Pin 1214)

Our local community members joined us at Diablo Country Club as we kicked off the fun and games for 2023 Day on the Green! We had kid friendly golf games, a putting contest for the older crew, light snacks, no-host bar, face painters, and the chance to win Disneyland tickets! Thank you to all who came and supported, we look forward to seeing you next year!

Laurie is a seasoned fitness instructor who motivates her clients to make their health an unwavering priority. She believes being fit is a lifestyle, and hopes to inspire those who work with her to feel the same. Driven by a true love for helping people develop and build their inherent inner strength, Laurie is here to propel the movement you’ve already started. Let’s go and LEVEL UP together!

Thank you to all who joined us at CPC in Danville, CA at one of our Backpacks of Hope stuffing events where we curated special backpacks to send to young warriors. For more information and future events contact dana@nephroticsyndromefoundation.org.

Learn More!

Thank you to our local Bay Area community that joined us at CPC Danville and took our basic boxed thermometers and transformed them into wrapped, hand-decorated, carefully constructed (with other valuable materials) ready-to-be-shipped packages for our patient community!

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.

Thank you to all who joined us for our casual 'meet up' for those based in Canada. Together we discussed meeting other caregivers, getting involved, spreading awareness or leaning more about NSF! This event was for caregivers, friends or family, or anyone inclined to learn more. 

Thank you to all who joined us for this interactive, activity based meet-up led by our incredible NSF Peer Team. We had so much fun spending time together and hope you can join us for our next Peer CONNECTIONS event.

Thank you to all who joined us for our shop-for-a-cause event with the wonderful local boutique - ElisaWen. We shopped their beautiful selection of dresses, jeans, tops, jewelry, bags, gifts and more and got out holiday shopping done while also supporting this years BOH Giving Drive to raise funding in support of NSF's Backpacks of Hope patient program. 

Every day we find more kids battling Nephrotic Syndrome, until now, without support. Backpacks of Hope offers each child a backpack full of comfort items, medical supplies and educational materials. Inside is warm blanket, Swell style water bottle, Albustix, over-ear headphones, a gift for the patient and siblings, important educational information and much more. Each is a personal connection to others in the same journey.

Our wonderful volunteers helped us to fill 150 backpacks for young warriors!

Thank you to all who joined us this Summer for our Summer Splash - Love & Lemonade campaign! Every Summer we partner with our wonderful community to get involved in supporting NSF's programs by fundraising. We encourage you to get creative and fundraise with friends through Bake Sales, Lemonade Stands, or any other form of fundraiser you lead!

Our Peer Team hosted another wonderful CONNECTIONS event virtually for our young warriors age 13 and under that included a fun summer craft activity. Check out our Peer Team page for future events and meetings!

We welcomed our wonderful NSF community back in-person to camp this year! Camp was filled with activities such as swimming, campfire songs, learning about animals, crafts, and MORE. We had an amazing time connecting with the young warriors and their families who attended, and getting to enjoy the beautiful scenery together. Stay tuned for Camp NSF 2023 details, and we hope you can join us next year!

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Event Photos!

Every day we find more kids battling Nephrotic Syndrome, until now, without support. Backpacks of Hope offers each child a backpack full of comfort items, medical supplies and educational materials. Inside is warm blanket, Swell style water bottle, Albustix, over-ear headphones, a gift for the patient and siblings, important educational information and much more. Each is a personal connection to others in the same journey.

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This program would not be possible without the support of our donors, volunteers, and NSF Community. Thank you to all who joined us at our Backpacks of Hope Stuffing Event on June 24th & 25th to help put together these backpacks filled with valuable supplies as well as love and hope as they are hand packed for each young warrior. 

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Event Photos!

Our Peer Team connected with our CONNECTIONS community members age 13 and under for some fun activities, conversations, and opportunity to grow together!

Day on the Green 2022 featured an 18-hole golf tournament at Diablo Country Club filled with fun and followed by an outdoor cocktail reception and awards ceremony where we continued the festivities in support of those in this battle. Plus enjoyed a silent and live auction, raffle and MORE!

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100% of the proceeds benefit children battling Nephrotic Syndrome and their families. 

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THANK YOU to all who supported Day on the Green 2022!

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Tournament Pictures - Studio One Photography

Reception Pictures - Kim Lind Photography (Password: 2022)

Thank you to all who joined us for a sweat, sip and shop in support of B.Hope! We teamed up with our B.Hope partner Beyond Active, Level Up with Laurie, Late Night Bakes (to name a few) to bring attendees a fabulously fun morning.

We hosted an outdoor, socially distant class with Laurie (10am start), mimosas, sweet treats and more. We had chair massages and energy healing...and shopping! @shopbeyondactive has the BEST activewear and wellness inspired gifts and donated 15% back to B.Hope!

Thank you so much for your love and support!

Every March is World Kidney Month! Join Us as we raise awareness and grow our programs to support patients and families in the Nephrotic Syndrome Community.

NSF was honored to collaborate with life coach & kidney transplant recipient Shelby Hansen. Together we hosted a 100% Free and Virtual dedicated wellness workshop just for our Peer Team. Designed specifically for our Nephrotic Syndrome community, Shelby lead a positive, lighthearted session with tools and techniques for living your best life with chronic illness. 

NSF's CONNECTIONS Program is an opportunity for young Nephrotic Syndrome warriors, 13 years and younger, who have a desire to support others navigating Nephrotic Syndrome, and who would like to be part of a community for support as well. Siblings 13 years and younger, are also welcome!

NSF's CONNECTIONS Program is guided by The NSF Peer Team, a group of young adults and older teens who themselves walk the journey of life with Nephrotic Syndrome. The NSF Peer Team is here to support others battling Nephrotic Syndrome and are passionate about encouraging younger community members to get involved in the NSF community in whatever way suits them. The NSF Peer Team is here to speak with parents, share experiences with young warriors and simply be a part of a collaborative and supportive community.

At NSF's first CONNECTIONS event of the year, we did fun Valentine's related games/crafts together!

We met together to discuss ways to give back and get involved with NSF as part of the We Hope fundraising program. We got to know each other as we brainstormed ideas for fundraising campaigns and spreading awareness about Nephrotic Syndrome. Several veteran fundraisers joined us to share their experiences and how they got started fundraising to support NSF! Check out our We Hope page to learn how to host an event or fundraiser yourself!

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Check it out: link to the  Zoom recording of the meeting 

We Hope Fundraising Summary

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Every day we find more kids battling Nephrotic Syndrome, until now, without support. Backpacks of Hope offers each child a backpack full of comfort items, medical supplies and educational materials. Inside is warm blanket, Swell style water bottle, Albustix, over-ear headphones, a gift for the patient and siblings, important educational information and much more. Each is a personal connection to others in the same journey.

Each year we host a B.Hope giving drive where we fundraise to support our backpacks of hope program and strive to reach even more families and bring them not only a backpack filled with valuable supplies but also a sense of support, community and hope.

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We raise funding to support this program year round, check out our support page to donate!

The Nephrotic Syndrome Foundation was the Snowfest beneficiary for the Sports Basement San Ramon Store event! Our wonderful friends as Sports Basement provided​​ Exclusive discounts on tons of gear, a chance to win some of the season's hottest (coldest?) snow gear, 2-for-1 lift ticket vouchers to Palisades Tahoe, Access to reps from over 40 snow industry brands, and Beer (the Give Back Six Pack is back!)‏

With the support of our incredible donors, volunteers, and community we impacted hundreds of families by helping to fill Backpacks of Hope for each of their young warriors. Thank you to all who helped, and we hope you can join us at our next B.Hope Day in 2022!

Event Photos!

 

A spooky fun' themed activity based meet up for young warriors ages 13 and under, hosted by NSF's Peer Team!

 

In Part 2 of this series we talked about school lunches, healthy snacks and even kidney-friendly product ideas. We were joined by certified kidney dietitian and nutritionist Kellsey from @ckdnutrition who shared some of her favorite snack products and general kidney friendly eating tips, and hear dfrom other parents and caregivers as to what their kids or teens love.

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Finding Health - Kidney Friendly Guide

Finding Health - Presentation from Kellsey Reed, RDN, LDN

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This virtual event was a social discussion between our Peer Team, young adults, and older teens 14 year + based in North America. Everyone who came got to know the team, ask questions, and hear about ways to get involved!

In Part 1 of this series we talked about how to advocate for your child or teen as they go back to school and need accommodations or support. We shared our 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. Parents had the opportunity to connect with others who have kids the same age. This session was done virtually, thank you to all who joined in and discussed this topic with us!

This year we went virtual! Although we would prefer to gather in person, we were excited to welcome patients and families from all over! Monday, July 12th we kicked off Camp with a 'Meet your Counselors' virtual meet up, followed by a Q&A with UCSF Nephrologist Dr. Paul Brakeman for parents. We offered virtual programming and fun all week long, and gathered for the big event on Saturday, July 17th. We provided Camper Boxes full of goodies and activities to each registered family! Camp was 100% free for all families. 

As we strive to reach new goals in providing support this year, we are excited to have completed another Backpacks of Hope Day! Thank you to everyone who contributed to this B.Hope Day - Volunteers, Donors, Supporters, etc. we couldn't do it without you! We look forward to continue providing Backpacks of Hope to more patients worldwide to brighten their lives

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Event Photos

Our main attraction for 2021 was an 18 hole golf tournament, hosted at the beautiful course of Diablo Country Club. With the help of all our wonderful sponsors, attendees, donors, volunteers, supporters & EVERYONE who contributed we raised over $165,000 to support our patient programs! Thank you to each and every person who supported our 1st ever Golf Tournament, and we hope to see you soon for another Day on the Green.

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Event Photos

Dr. Tom Tarro, UCSF pediatric infectious disease specialist presented on the vaccine, background, alternatives, how they have seen Covid presenting in pediatric patients and more. He was joined by co-host Dr. Paul Brakeman, one of UCSF’s top pediatric nephrologists, who answered nephrology related questions on the subject. The session finished with open Q&A. 100% free for patient families, and hosted virtually. Stay tuned for future sessions!

Our Peer Team Connections got together to enjoy some Spring Fun activities and spend time connecting with one another and growing in their journey together.

March was Kidney Awareness Month! It was a wonderful opportunity to spread awareness about Nephrotic Syndrome and the importance of support for those in this journey. 

Every day we find more kids battling Nephrotic Syndrome without support. Backpacks of Hope offers these families support when needed most. Each Backpack of Hope contains valuable medical supplies, comfort items and educational materials. Each one offering a personal connection to others in the same journey.

Gratitude is not a natural ability for many of us, and can be especially hard for those with Nephrotic Syndrome. The Nephrotic Syndrome Foundation partnered with “The Gift of Being Grateful”, to provide the 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!

NSF Peer Connections Meet-Up and Card Making - The Nephrotic Syndrome Foundation Peer Team hosted a fall themed FUN meet-up! Join us! Participants Dressed up in their Halloween costume and we made cards for other Nephrotic Syndrome warriors to show our love and support.

This Summer we brought back one of our favorite awareness campaigns and fundraising events - Summer Splash! Every participants contributed by cannonballing or diving into a pool, lake or other body of water in support of finding a cure for Nephrotic Syndrome. Thank you to our amazing sponsors including our Big Kahuna Sponsor Leslie's Pool Care.

Although COVID-19 cancelled our in person Camp NSF, we didn't let that stop us from doing fun crafts, games and activities with our amazing campers and counselors. This year we hosted our first virtual camp with patient families from across the United States! We can't wait to see you all in person again for Camp 2021.

We filled over 200 Backpacks of Hope with the help of our amazing sponsors and volunteers! At our social distancing backpack stuffing event, small groups of volunteers joined us at CPC in Danville to completely clear out waitlist and provide each child who was waiting with a Backpack of Hope.

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Event Photos

Over 100 people joined us for our first EVER Virtual Dinner Party. As a result of COVID-19 and all NSF's in person events being put on hold, Dine Together served as our fundraiser to sponsor 226 Backpacks of Hope, eliminating our waitlist! John and Noelle Micek hosted our event alongside NSF founders Andi and Tucker Callaway. CPC's Tyler Scott led us in a blessing before The Lear Family shared their brave journey with Nephrotic Syndrome.​ Thank you to all our Sponsors and Donors!

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Watch the Event

Over 100 incredible people came out to serve on March 7th, 2020, putting together Backpacks of Hope for 100 young warriors battling Nephrotic Syndrome, lifting up not only 100 tough young fighters, but also their families, moms, dads and brothers and sisters. We are SO grateful to all those who helped...our volunteers, Team NSF, our sponsors, donors, community partners and to those who fight this battle ever day and inspire us to do more. 

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Event Photos

Thank you to everyone who came out, contributed or donated in support! We could not be more proud to be a part of this amazing community. Together we raised $97,000 to allow The Nephrotic Syndrome Foundation to continue our programs in 2020! Thank you!!

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Event Photos

We rode horses, tie-dyed shirts, hiked, stargazed, swam, decorated cookies, zip-lined, did art projects, played air hockey, had campfires and movie nights and tons more. Twenty one patient families attended NSF's first ever TWO night weekend family camp, and by the time we left we were like family. 

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Event Photos

Local Love 2019 featured multiple bands, eats from local restaurants, and good vibes all day long! Thank you to those who were a part of this special day. Together we raised $45,000 for NSF!

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Event Photos:

Jolie James Photography

Kim Lind Photography (Password: LOVE)

Tracey Medcalfe Photography (Password: locallove04202019)

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B.Hope Fall Giving Drive wrapped up with 60 Backpacks sponsored!! Thank you all for your support!

We loved the enthusiastic jumps, dives and flops in support of all those battling this tough disease. You helped us raise SO much awareness and almost $2,500 for our cause! 

Big thanks to our sponsors who matched every jump and to all of you who donated and helped us spread the word!

Our 2018 NSF Day Camp offered games, arts and crafts, ropes course, magician, therapy dogs, horseback riding and more. Finishing off with afternoon swimming and snow cones!

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Camp Video

With your help Game Day 2018 raised $85,000 and brought love and light to this important cause. Thank you all who came out to enjoy this special Sunday at the Ball Park or donated in support.