Foundation for Sarcoidosis Research: Action Alert
Ask your U.S. House Representative to Join the Bipartisan Sarcoidosis Caucus
Background
As a result of key advocacy efforts led by FSR, Sarcoidosis is gaining awareness on Capitol Hill. Most recently, U.S. Congressman Josh Gottheimer (NJ-5) announced the creation of the bipartisan Congressional Sarcoidosis Caucus.
From Gottheimer’s Office:
U.S. Congressman Josh Gottheimer (NJ-5) announced the creation of the bipartisan Congressional Sarcoidosis Caucus, a new coalition dedicated to raising awareness, supporting patients, and advancing innovative research and development to treat Sarcoidosis, a debilitating, chronic, and sometimes fatal inflammatory disease that currently has no cure.
Gottheimer is launching the caucus after losing his mother Gwenn to Sarcoidosis in 2018. Gottheimer has led multiple appropriations funding requests since 2019 with the goal of expanding funding, research, and development for Sarcoidosis treatments through the National Institutes of Health.
See full press release here: RELEASE: Gottheimer Launches Bipartisan Sarcoidosis Caucus to Battle the Debilitating Disease in Memory of His Mother
--
To continue this momentum, we encourage our patient community to reach out to your House representatives and encourage them to join the bipartisan Sarcoidosis Caucus. See below for how to take action and a template to use.
Take Action
Email your House office through Voter Voice:
FOR PATIENTS: DRAFT TEMPLATE
Dear [Congress Member],
Thank you for your leadership in advancing medical research and addressing patient care issues. My name is [insert name] and I am from [Insert Hometown City and State]. I am writing you today to encourage you to join the bipartisan Sarcoidosis Caucus, led by Congressman Gottheimer (NJ-05) and Congressman Miller (OH-07).
Sarcoidosis is an inflammatory disease characterized by the formation of granulomas—tiny clumps of inflammatory cells—in one or more organs of the body. When the immune system goes into overdrive and too many of these clumps form, they can interfere with an organ’s structure and function. When left unchecked, chronic inflammation can lead to fibrosis, which is the permanent scarring of organ tissue. This disorder affects the lungs in approximately 90% of cases, but it can affect almost any organ in the body. Despite increasing advances in research, sarcoidosis remains difficult to diagnose with limited treatment options and no known cure. Sarcoidosis is considered chronic in people whose disease remains active for more than 2-5 years; in this population sarcoidosis can be debilitating and life-threatening. It’s estimated that the prevalence of sarcoidosis in the US ranges between 150,000 and 200,000 with an estimated 1.2 million individuals with sarcoidosis worldwide.
As a patient with sarcoidosis, [insert personal stories and testimonies as a local patient. Speak to the challenges, access issues and any other lived experiences that you as a patient have experienced living in the member’s district. Speak to why joining the caucus and generally spreading awareness about sarcoidosis is important to patients].
I hope there continues to be better treatments and new discoveries for myself and the wider sarcoidosis patient community. It is essential we spread awareness and encourage members of Congress to advance legislation and initiatives that will improve the health outcomes of sarcoidosis patients. Joining the caucus will ensure you will be part of and remain supportive of such efforts.
In order to join the caucus, please reach out to Zachary Newman at Zachary.Newman@mail.house.gov in Rep. Gottheimer’s office or Karen Williams at Karen.Williams@mail.house.gov in Rep. Miller’s office.
Thank you for considering this request.
Sincerely,
[Your name and address]
--
Final Step: Keep us posted on feedback you receive! If there are offices that seem interested, be sure to let FSR know so we can follow up.
Thank you for your advocacy!