In 2006, Northwest Kidney Kids was founded by a dedicated group of pediatric nephrologists, social workers and parents of children with chronic disease/end-stage renal disease with the sole purpose of continuing Kidney Kids Family Camp – a fledging summer program of 15-17 families coming together to support and sustain one another.
After successfully forming Northwest Kidney Kids as a registered 501(c)(3) nonprofit organization, its founders worked together each year to continue Family Camp traditions. Jill Brown, executive director at Northwest Kidney Kids, said that over the past 15 years since the organization’s inception, the dedicated staff, board of directors and community members of Northwest Kidney Kids continue to serve children and families affected by chronic kidney disease. Brown said the organization’s programs have grown to include two additional annual camps, clinical support initiatives and countless resource projects. The organization serves children and families all over Oregon and Southwest Washington.
Brown, who lives in Ridgefield, said she first personally became involved with Northwest Kidney Kids in 2013 when her daughter was on dialysis and awaiting her own kidney transplant. Brown’s daughter received a transplant for her, her living donor, nine years ago.
“Northwest Kidney Kids was a volunteer organization with some minimal contractors to do the work until 2014 when I was hired as the first part-time employee,” Brown said. “We have three .75 FTE staff positions and more volunteers working daily to serve our mission. We held our Family Camp in August and had one of the largest volunteer teams we have ever had.”
Brown said that 2022 is also projected to be one of the organization’s strongest years financially – raising close to $300,000. Northwest Kidney Kids relies on funding from three main sources – events like their Gala held in spring, Strut Your Kidney and a dash for Northwest Kidney Kids this September. The organization also receives grant funding from various foundations and depends on individual contributions throughout the year.
Currently, Northwest Kidney Kids offers a variety of programs, including the Camps Program, which includes a Winter High School Camp, Youth Summer Camp and Weekend Family Summer Camp; Mentoring Program, which includes programs like Parent Support, 13+ Peer Mentoring Program, and Connect Groups for Kidney Kids and Siblings; Clinical Support; and Family & Youth Support, which includes things like Pediatric Transplant Community Discord Server, Youth & Family Outing and other smaller activities such as Transplant Celebrations, Art Kits for Dialysis Units, yearly scholarships and more.
During the COVID-19 pandemic, Brown said they were able to take time to develop new programs in order to serve a more significant number of children and families but also strengthen the services they offer throughout the year. The mentoring programs were all created during the time of the pandemic in order to provide a connection for the Northwest Kidney Kids community that had been disrupted during the pandemic.
“Children with an organ transplant take medications daily to suppress their immune system from rejecting the transplanted organ,” Brown said. “This additional layer of concern had a huge impact on families and the community that provides services. Initially, families struggled with getting supplies they were already using daily in the care of their children such as gloves, masks and hand sanitizer, and the needs of the children didn’t vanish with Covid putting an extra layer of stress and burden on families. We became involved in making sure our families had access to information as well as prioritization for vaccines to protect their families. In 2020 and 2021 most of our in-person events were canceled due to the risk to our population.”
“However, our community still needed support and connection,” Brown continued. “We were able to create three mentoring programs – Parent Support, One-on-One Peer Mentoring for 13+ and 8-12 years old Connect Group for Kids and Siblings. These virtual programs along with a discord server for the pediatric transplant community have provided a connection for our community and will continue as we have started back up our Camps Program this summer.”
Brown said Northwest Kidney Kids will be working on their next Strategic Plan this fall as they look forward to the needs of the community.
“Our main goal is to provide support and connection to those experiencing end-stage renal disease and their whole families – including parents/caregivers and siblings,” she said. “We are thinking about engagement and how we can continue to reach families, especially those in rural areas.”
“We also have representation of those with lived experience throughout the organization. This year we had two new board members both with a kidney transplant. Within our staff and volunteers, ranks are mostly kidney kids who have aged into young adults or parents supporting the committees and doing the work. This strong connection to who we serve provides powerful voices within the organization at every corner.”
To learn more about Northwest Kidney Kids, visit their website at nwkidneykids.org.
