Saint Anselm Junior, Sean Converse, spoke before Congress in Washington, D.C., on July 25 with NephCure, the non-profit organization he is a member of. Converse, alongside 67 other advocates in the organization, spoke to Congress to discuss a bill to prevent end-stage kidney disease. 

NephCure is “a non-profit organization dedicated to serving patients and families living with rare, protein-spilling kidney disease” located in King of Prussia, Pennsylvania. (nephcure.org) Converse, alongside other advocates in the organization, discussed the bill H.R. 6790 The New Era of Preventing End-Stage Kidney Disease Act, according to Converse. 

“I spoke in front of Congress to get them to pass a bill…to get doctors and legislation that allow you to reduce kidney failure before it gets to the end-stage… advance research and standards of care…improve healthcare provider education,” Converse said. 

The bill aims to improve medical outcomes and overall quality of life for Americans living with rare kidney diseases and their families. To work towards a cure for rare kidney diseases, the bill’s sections call to “require the U.S. Department of Health & Human Services

(HHS) to evaluate treatment methods that would delay or eliminate the need for dialysis and

transplant and provide legislative recommendations to Congress to support its findings.” (nephcure.org)

The bill also calls to “close the gap for underserved communities,” Converse explained, to “improve care in communities that have disproportionate rates of RKD.” (nephcure.org) The bill calls on the Department of Health and Human Services to study a variety of issues particularly in genetic issues/mutations. 

The bill also aims to “advance research and standard of care…which could lead to innovative, less invasive treatments and possibly a cure.” (nephcure.org) The bill says that specialized centers for research on rare kidney disease will have the resources to potentially lead to a cure, which is the main goal of the organization. 

NephCure and the H.R. 6790 bill call for doctors to receive more education and specialized training to be able to increase knowledge and expertise to aid those diagnosed with a rare kidney disease. 

The last section of the bill calls to empower patients with rare kidney disease and those in their community to advocate for themselves and “take charge of their health care journey.” (nephcure.org) 

Living with a rare kidney disease, Converse advocates for his own disease and for others living with rare kidney diseases. “I was diagnosed at 19 in March of 2023 with IgA nephropathy and shortly became a part of NephCure in April or May [of that year],” Converse said. Also called Berger’s disease, Converse’s diagnosis is a rare kidney disorder where antibodies build up in kidney tissue. 

Though not life-altering, the disease is “specific and it’s special to me,” Converse said. Since his diagnosis and joining the organization, he has traveled across the country with the organization at least once or twice a month to speak about the cause and the need for specialized care for rare kidney diseases, Converse explained.

Speaking to Congress was not Converse’s nor the organization’s first attempt at spreading awareness and advocating for change, but their experience allowed them to use their voice and spread their message to the decision makers of the country on a federal level. 

Being a part of the organization has given Converse the platform to speak out about the issues that he has experienced with his health and diagnosis. Opportunities like the conferences, speaking to Congress, and filming a video have given Converse the space to make his voice heard and encourage more awareness for those diagnosed with rare kidney disease. 

Converse explained that spreading the word on different platforms allows information to be “out there for people to find.” “I have to do my 1%,” Converse said, and sharing his story to spread awareness to those who need it is the part that he can do with the organization. 

Although he and the organization are still hoping for the bill to be passed, “I’m making a difference along with all of the other people,” who do work for rare kidney diseases, Converse said. “I think that it’s vitally important for us all to get out there and share our story, because somewhere, somehow, somebody is awaiting answers.” Advocating for himself and others like him with rare kidney diseases, Converse is making a difference in the RKD world.