August recess is a longstanding tradition in Congress, allowing federal lawmakers to balance their responsibilities in Washington, D.C., with their obligations to constituents. Representatives and Senators head back to their home districts and states for the month to take a break from their regular schedule of events, which includes hearings, debates, floor votes and committee meetings.
Now until September 4, Congressmembers will be campaigning locally and meeting with community members. Here are three opportunities to leverage this time to further your organization’s policy priorities and strengthen relationships with members of Congress:
1. Arrange an In-District Meeting or Virtual Meeting
Federal lawmakers might seem disconnected from concerns that are important to you, however, it is important to recognize that they rely on constituent input and engagement to inform their decision-making and maintain their positions in office. In-district meetings provide a more accessible and personal setting for advocates to share their opinions on policy issues, garner support for legislation and build interpersonal connections with in-district staff.
Recently, Caryn Anatriello, Manager of Advocacy and Support had the opportunity to meet with Congressman Paul Tonko. The ask was simple, for the continued inclusion of scleroderma in the Department of Defense (DoD) “eligible for study” through the Peer-Reviewed Medical Research Program (PRMRP). And to please let their Senate Defense Appropriations Committee colleagues know that their constituents have said that this request is important to them and to everyone impacted by scleroderma.
Pictured: National Scleroderma Foundation’s Caryn Anatriello, Manager of Advocacy and Support with Congressman Paul Tonko, New York’s 20th Congressional District.
Update-Friday, July 28, 2023
Congratulations to our advocates! The Defense Subcommittee released the list for the Peer Reviewed Medical Research Program (PRMRP) and scleroderma is again listed! By including scleroderma on the DOD’s eligibility list again this year, researchers focusing on scleroderma will be able to compete for and secure the federal support that will help their current work succeed.
Our Priorities
As a community, scleroderma advocates are focused on outreach to United States Senators and Representatives to increase their understanding of scleroderma and its dramatic impact on the health of individuals and families. Symptoms of scleroderma can derail a person’s life and end a career or cause isolation from peer groups and society.
Senate Appropriations, the PRMRP, and Researchers’ Eligibility for Federal Funding
BACKGROUND: Each year, the United States Senate crafts a Department of Defense (DOD) appropriations bill, which includes a list of conditions that are deemed “eligible for study” through the Peer-Reviewed Medical Research Program (PRMRP).
For a condition to be included, Senators need to support the condition and officially ask for its inclusion on the list. Senators have many competing appropriations priorities, and to support a specific condition like scleroderma, they need to be asked to do so by their constituents. That includes you.
DOD support for scleroderma research is important! Research into the underlying mechanisms of scleroderma shows relevance to all fibrosis, which occurs at higher rates among individuals who serve in the military and our veterans. Also, military service-associated environmental triggers (particularly silica, solvent, and radiation exposure) are believed to be linked to the onset of scleroderma in individuals who are genetically predisposed to the condition.
Scleroderma has been included as a condition eligible for study in the past, leading to PRMRP funding for nearly $10 million in meritorious and meaningful scleroderma research projects. By including scleroderma on the DOD’s eligibility list again this year, researchers focusing on scleroderma will be able to compete for and secure the federal support that will help their current work succeed.
Senate Defense Appropriators:
Jon Tester (D-MT), Chair
Richard Shelby (R-AL), Ranking Member
Richard Durbin (D-IL)
Patrick Leahy (D-VT)
Dianne Feinstein (D-CA)
Patty Murray (D-WA)
Jack Reed (D-RI)
Brian Schatz (D-HI)
Tammy Baldwin (D-WI)
Jeanne Shaheen (D-NH)
Mitch McConnell (R-KY)
Susan Collins (R-ME)
Lisa Murkowski (R-AK)
Lindsey Graham (R-SC)
Roy Blunt (R-MO)
Jerry Moran (R-KS)
John Hoeven (R-ND)
John Boozman (R-AR)
2. Attend a Town Hall
Virtual or in-person Congressional town halls provide citizens with a unique platform to petition their government to remedy grievances and courageously voice their opinion on policy issues and solutions. Constituents can hold their legislators accountable in a public forum, and in turn lawmakers can present comprehensive justifications for their political stances.
Tips for organizing and participating in a local town hall:
- Make your presence known by inviting local allies and supporters. Cohesive branding such as signs, shirts and flyers will help increase your organization’s visibility to members of Congress and local press.
- Ask concise questions that demand real answers. If you would like your lawmaker to support specific legislation, come prepared to tell your story, explain the issue, how it impacts your community and urge them to enact meaningful policy solutions.
Sample Script: My name is ____________________, and I live in ____________________ (city/state – establishes that you are a constituent in their congressional district).
I am an advocate with the National Scleroderma Foundation, a nonprofit organization dedicated to the concerns of people whose lives have been impacted by the autoimmune disease scleroderma, also known as systemic sclerosis, and related conditions.
The Scleroderma Foundation’s mission is to 1) support individuals affected by scleroderma, 2) promote education and public awareness, and 3) advance critical research and improve scientific understanding to improve treatment options and find the causes and a cure. The foundation funds clinical research to find the cause and cure for scleroderma and related conditions.
Scleroderma is a chronic connective tissue disease affecting approximately 300,000 Americans. The word scleroderma means hardening of the skin, which is one of the most visible manifestations of the condition. The cause of this progressive and potentially fatal disease remains unknown. There is no cure, and treatment options are limited.
Symptoms vary greatly and are dependent on which organ systems are impacted. Prompt diagnosis and treatment by a qualified physician may slow the progression of the disease. Symptoms vary greatly depending on what type of systemic sclerosis is affecting the individual and which organ systems are impacted. Serious complications of the disease include interstitial lung disease, the leading cause of death, followed by pulmonary hypertension and cardiac involvement. Other complications include renal crisis, calcinosis, digital ulcerations, fatigue, myocardial disease, joint contractures, tightening of the skin, gastric paresis, esophageal dysfunction, Sjogren’s, anemia and more.
Share a glimpse into your scleroderma story. Be concise and let them know how scleroderma has affected your life. Consider developing 2 or 3 impactful statements or examples to share. You will not have time to share a timeline or full story.
- Legislation. Currently, we need to thank legislators for their support and ask them to continue supporting the $5 million Scleroderma Peer-Reviewed Research Program at the Department of Defense. And keep scleroderma on the “eligible list” for study in FY25.
- Capture the event on social media and invite local press. Utilize media outlets to further garner the attention of your lawmakers and the public.
Town halls advertised on their social media channels and websites, but also monitoring local news stations or contacting their in-district office for details.
3. Host an In-District Event
Representatives and Senators appreciate good press and are often willing to participate in in-district events to demonstrate their connection to the community. Invite your member of Congress to an awareness walk, a site visit at a health care facility, or organize a special event, inviting fellow advocates and the media to participate.
Pictured: Mayor of Rochester, New York, Malik Evans and National Scleroderma Foundation’s Tri-State Chapter, Chapter Advisory Council, Marilyn Sibley. The Mayor was honored for his work for health and education in the Rochester community.
For more information on how to engage federal lawmakers during August Recess, contact us. Please be sure to share your successes with us at info@scleroderma.org.
Join the Action Alert Network
Come and join our network of volunteer advocates. Whether it’s through a letter, fax, email, phone call, or in-person, connecting with your U.S. Representative and Senators is an important step in educating government officials about scleroderma and the impact it has on individuals and families in terms of health and economically.
Action Alerts are time-sensitive announcements sent via email when it’s time to take action and contact your Senators and/or Representative about a vote or sponsorship of a bill that impacts people affected by scleroderma.
The Foundation provides background information to help you understand the issue and how to communicate about it. The most important part of responding to an action alert is telling your scleroderma story. Government works best when legislators understand the personal impact of legislation. JOIN THE ACTION ALERT NETWORK