New congressional caucus to advocate for sarcoidosis research, funding
Team led by congressman whose mother died from disease complications
Written by |
A bipartisan group of U.S. lawmakers is joining forces to form a new team — the Congressional Sarcoidosis Caucus — to help lead a nationwide fight against sarcoidosis, a rare disease that can affect any of the body’s organs.
The newly formed caucus will work to raise awareness about sarcoidosis and advocate for more federal funding for research into the disease. The lawmakers will also work with the U.S. Food and Drug Administration (FDA) with a goal of modernizing regulatory systems and getting treatments to patients faster.
Formation of the caucus was spearheaded by Congressman Josh Gottheimer of New Jersey, whose mother, Gwenn Feldman, died from complications of sarcoidosis in 2018.
“Sarcoidosis is a devastating disease that too often goes undiagnosed and under-researched,” Gottheimer said in a press release. “After losing my incredible mom to this illness, I know how urgent it is that we do more to support patients, families, and researchers working toward better treatments and, ultimately, a cure.”
Gottheimer, a Democrat who represents his state’s fifth district, is joined on the new caucus by Congressman Max Miller, a Republican representing Ohio’s seventh district.
“I am honored to join the bipartisan Congressional Sarcoidosis Caucus to help shine a light on this devastating rare disease,” Miller said. “Too many Americans and their families face the uncertainty and hardship that come with Sarcoidosis, and far too few treatment options exist today. By working together, we can raise awareness, advance critical research, and pursue policies that give hope to patients and move us closer to finding a cure.”
The new congressional caucus was applauded by the Life and Breath Foundation, a sarcoidosis advocacy group, which called the initiative “a critical step forward for patients and families.”
The group said this federal-level effort will “[bring] much-needed attention, research, and hope to a disease that has too often been underdiagnosed or misdiagnosed and overlooked.”
Mary McGowan, president and CEO of the Foundation for Sarcoidosis Research, also celebrated the new caucus, calling it “an exciting effort in building legislative pathways to improve access to care, advance research, and improve the lives of the nearly 200,000 individuals in the U.S. impacted by sarcoidosis.”
Congressman introduced ‘Gwenn’s law’ in honor of mother
Sarcoidosis is a rare disorder marked by abnormal clumps of immune cells that can form in the lungs and other organs, affecting their function. Like most rare diseases, sarcoidosis has limited available treatment options, and it is often misunderstood even by medical professionals.
Last week, in honor of Rare Disease Week — marked every year on the final week of February — Gottheimer put forward several pieces of new legislation aiming to improve life for people with rare diseases.
These include “Gwenn’s law,” named for Gottheimer’s mother, which aims to help increase the number of women participating in rare disease clinical trials.
Other initiatives include “Cameron’s law,” which seeks to increase incentives for pharma companies investing in potential rare disease treatments, and “Leo’s law,” which aims to help extend rare disease clinical trials that stalled due to the COVID-19 pandemic.
We’re fighting with urgency to increase research funding, improve clinical trials, and support the patients, families, and researchers working toward better treatments — and ultimately a cure.
Accompanying Congressman Gottheimer at this year’s State of the Union address in Washington, D.C., was his sister, Emily Gottheimer.
“Emily and I know firsthand the devastating toll Sarcoidosis can take on families,” the congressman said in a separate press release. “That’s why we’re fighting with urgency to increase research funding, improve clinical trials, and support the patients, families, and researchers working toward better treatments — and ultimately a cure. During Rare Disease Week, and in memory of our mom, we’re recommitting ourselves to ensuring that no family feels alone in this fight.”
For her part, Emily Gottheimer noted that “it’s a terrible feeling to have no answers when a loved one is suffering. When they look to you.”
She said a key goal is to speed things up in rare disease research.
“We have to cut through red tape, invest in research, and find cures. This is about giving families hope — and delivering results,” Emily Gottheimer said.
