Tell us about your organization and the work you do there.
The National Kidney Foundation of Illinois (NKFI) improves the health and well-being of people at risk of — or affected by — kidney disease through prevention, education, and empowerment. The NKFI is a lifeline for all people affected by kidney disease. As a pioneer of scientific research and innovation, the NKFI focuses on the whole patient through the lens of kidney health. We are relentless in our work, and we improve lives through action, education, and accelerating change.
In my role as the Director of Outreach and Government Relations, I am responsible for developing community partnerships to help educate the public about kidney disease and our mission. I also interface with patients and support them by informing them of important resources, as well as advocating for better policies for all that we serve.
What communities do you serve?
We serve communities throughout the entire state of Illinois.
What populations do you serve?
We serve people who are at risk for — or living with — kidney disease, dialysis patients, transplant patients, and living donors and their families.
Why did you decide to join the Illinois Kidney Care Alliance?
We joined because advocacy is extremely important regarding empowerment. Therefore, we want to work collaboratively with organizations that make it a priority to advocate on behalf of kidney disease.
What do you hope the alliance accomplishes?
We hope the alliance can align the messages of the partners and elevate those voices to affect positive change for the kidney community.
What policy changes do those living with kidney disease need now?
Kidney patients need policies to make the living donor process easier for all. They also need policies that reduce barriers to transplant for all who are medically eligible.
What can lawmakers do to help those with kidney disease?
In Illinois, better policies regarding Medicaid coverage would be immensely helpful to those with kidney disease, since most people who are affected by kidney disease are in our most vulnerable communities. Additionally, better reimbursement levels and faster claim turnaround times would increase the number of qualified medical professionals who are available to service the most vulnerable populations within their own communities.
What is something most people don’t know about dialysis/kidney disease?
Over 37 million people in the United States are living with some stage of kidney disease, and 90% of them don’t know it. Knowledge is power because, with nutritional and lifestyle changes, you can slow — or stop — the progression of kidney disease.
If you can share one story about the work you and your organization do, what would it be?
Prior to attending the NKFI’s Teens and Young Adults with Kidney Disease event, 16-year-old Jonathan was not listed for a transplant — despite his kidney function qualifying him for inclusion. His issue was not one of need, but one of adherence. As a teenager, he had a difficult time eating right and taking his medications as prescribed.
At the event, Jonathan and his younger sister learned about healthy snacks, the importance of medical adherence, and most importantly: they met other teens and siblings who are living with kidney disease or with transplants.
After the event, Jonathan took the information the NKFI provided to heart. He downloaded an app to remind him to take his medication and he began eating with his kidneys in mind. Just six months later, his parents received a life-changing phone call that an anonymous living donor had come forward. His mom Nicki says, “We were definitely not expecting [to get the call] but we’re beyond grateful.”
According to Nicki, “We are so excited for him and his future. He will be able to go to school on a regular basis and even get a job, which he has been wanting to do but with dialysis, school, and life he couldn’t. A lot of positive changes. A new normal I suppose, since our normal looks a lot different than others.”
The experience of meeting and learning alongside other teens with kidney disease and transplants made a world of difference for Jonathan. Teens and children can often feel “othered” when their peers do not have to consider dialysis, medication, or dietary restrictions. The support and education provided by an age-appropriate program was critical to Jonathan receiving his life-saving transplant.
Any additional information you would like to share about your organization?
The National Kidney Foundation of Illinois is recognized as a multi-faceted, forward-thinking non-profit, and is proud to partner with a number of Illinois’ top hospitals, health care organizations, and county and state health departments. Through our community health programs, free screening initiatives, and work in educational outreach, we are able to: pursue our mission throughout the state, provide resources to patients and families affected by kidney disease, and ensure communities are equipped to be effective advocates for their own health.