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Families Storm the Hill for NephCure Advocacy Day

Thirty NephCure families from New York to Alaska visited Washington, DC on Wednesday, October 5 as part of the inaugural NephCure Advocacy Day.

The families met with over 75 Senators and Representatives in an effort to raise awareness and funding in the fight against the kidney diseases FSGS and Nephrotic Syndrome. 

Families began arriving for Advocacy Day on Tuesday, October 4 with NephCure hosting a dinner for families to meet each other at the L'Enfant Hotel. Then on Wednesday morning, families were treated to breakfast in the Rayburn Building, where NephCure presented Representative Jim Gerlach with the distinguished Public Service Award, recognizing his dedication to NephCure's mission. Rep. Gerlach authored the letter patients asked other Senators and Representatives to sign asking for funding of kidney disease research.

Families were then sent on their way in groups.  They had the chance to meet many elected officials and their staff members.

“This was a great day,” said Sarretta McDonough, an attendee of Advocacy Day with her five-year-old daughter Lauren, who suffers from Nephrotic Syndrome. “It was so inspiring to see the turn out of NephCure families and receive such positive feedback from all the Senators and Representatives we met with. NephCure goes to great lengths to help patients and their families make a real difference. Setting up the dozens of meetings held throughout the day with numerous congressmen and women is just another example of the dedication and determination of everyone involved to find a cure for FSGS and Nephrotic Syndrome.”

During the day, families also had the opportunity to take a tour of the White House.

More government funding for this disease group would not only help those suffering from the disease, it could also save billions of dollars  per year in dialysis costs. This disease group (defined as Minimal Change Disease, FSGS and Membranous Nephropathy, among others) accounts for approximately 12 percent of prevalent End Stage Renal Disease (ESRD) cases at an annual cost in the United States of more than $4 billion.

NephCure has committed over $7 million towards research of these diseases in recent years and has proactively sought millions more in matching programs from various research institutions to maximize the research dollars.

FSGS is the same disease that forced future NBA Hall-of-Famer Alonzo Mourning and fellow NBA star Sean Elliott to undergo transplants. Former New York Mets catcher Ed Hearn has had three transplants due to FSGS and continues to fight the disease today, proving that a transplant isn’t always an answer.

Here are some news stories from the visits.

Santa Monica Daily Press (Santa Monica, CA)
Rallying for a Cure
October 4
Click here

The Huffington Post (National Website)
My New Kidney
October 4
Click here

Journal News (Larchmont, NY) 
Larchmont boy, mother lobby in Washington for kidney disease research funding
October 6
Click here