Bobby Jones Chiari & Syringomyelia Foundation

There is always new legislation being proposed at both the federal, state and local levels that is relevant for patients and families living with all types of disorders. 

We will do our best to give you the best information on at least a yearly basis, but policy changes fast... things may have changed by the time you finish this sentence!  You can always try your best to stay up-to-date on legislation that is specifically relevant to you and your family.

Attending the 2025 Together We Thrive Summit and meeting with lawmakers? Here are our specific asks for 2025. Always keep in mind: this information is current as of the morning of 6/29/2025 and may change at any time!

Revisit the presentation given by Julie Rauch at this year's Summit. Download all the slides here: 2025 Advocacy Presentation.

Here are the most important slides about our asks:

1. Protect American Health Care 

2. Protect Research

3. Rare Disease Congressional Caucus

To try and keep things manageable, we do our best to set policy priorities that benefit all families impacted by Chiari, syringomyelia and related disorders. Below are just some of the policy areas that you can choose for your advocacy efforts.  Have questions?  Contact us.

The only way to ensure a better future is to continue funding critical research agencies, which use federal tax dollars to fund groundbreaking studies that better understand and treat these disorders.  These agencies include the National Institutes of Health (NIH), Agency for Healthcare Quality (AHRQ), Centers for Disease Control & Prevention (CDC), the Food & Drug Administration (FDA), and more!  You can find a list of previously or currently funded federal research trials by visiting ClinicalTrials.gov and searching for your specific disease of interest.

Specifically, we urge elected officials to support legislation that will:

• Maintain or increase funding available for NIH/NINDS, CDC, FDA and initiatives such as the B.R.A.I.N. Initiative or the All of Us Research Program that fund large-scale research in neurological disorders to bring us closer to precision medicine
• Maintain or increase funding for fellowship/educational grants for physician-scientists in training
• Support larger and more innovative studies, capable of implementing new technologies like AI to speed up breakthroughs
• Support Chiari malformation, syringomyelia and related disorders like Ehlers-Danlos syndrome to be included as conditions eligible for funding through the CDMRP

We fully support the development of a health care system that best serves patients and the clinicians who treat them.  We support legislation that:

• Ensures equitable access to medical imaging and clinical interventions and supports clinical research that assists in minimizing access gaps
• Ensures equitable access to insurance coverage and maintains appropriate out-of-pocket spending limits for families
• Maintains or increases coverage for families living with disabilities or socioeconomic disadvantages
• Continue to allow children to remain on a parent's insurance until the age of 26, regardless of clinical diagnoses
• Encourages appropriate education of clinical professionals and the establishment of evidence-based guidelines for care

The ability to work, live and play is critical to living a fulfilling life-- and a diagnosis of any sort should not change that.  For that reason, we also urge legislators to pass laws that:

• Protects the rights of individuals living with these disorders in school and the workplace, including against discrimination
• Enforces and expands accessibility standards
• Encourage more research specific to families living with these disorders to better understand the social determinants that modulate long-term health outcomes, including the built environment and existing disparities/inequities that impact access to high-quality care

1. Support robust funding for agencies researching and covering treatment of patients living with Chiari malformation, syringomyelia, Ehlers-Danlos syndrome and related disorders.

Level of Government: Federal / National

Assoc. Legislation?:  H.R.1 - One Big Beautiful Bill Act (119th Congress)

About: Funding to federal agencies like the NIH, CDC, AHRQ and FDA help keep research happening and clinical trials moving forward. The federal government directly funds research into these disorders as well as actual medical care for patients who are on Medicare, Medicaid, state-sponsored health plans and who visit a federally-funded medical center like the V.A. or a Federally-Qualified Health Center.

For example: because there is very little funding available for Chiari-specific research, a lot of the work being done on the Chiari Surgical Success Scale (CSSS) project is done by coordinators who are partially paid via indirect costs from other NIH grants provided to those academic sites. Without sufficient NIH funding, even critical research projects that are not funded by the NIH may grind to a halt-- including this critical study focused entirely on improving patient care in Chiari and related disorders. Slowdowns in scientific grants can disrupt other funding mechanisms outside of the federal government, delaying breakthroughs so desperately needed by patients and families today.

Ask Your Elected Officials:

• Vote to maintain or increase funding for these agencies.
• Oppose any proposal that reduces or consolidates research institutes and programs.
• Reductions will weaken research pipelines, delay critical advancements, and disproportionately impact rare disease funding streams.
• Reject President Trump's FY 2026 "Skinny Budget" Proposal that proposes a 26.2% cut to HHS funding, a reduction of roughly $3.58B to CDC funding, a cut of approximately $18B to the NIH, and a series of consolidations that would hamper their collective research capacity. These policy decisions will weaken the American research pipeline, disrupt clinical trials, stall treatment development and exacerbate existing inequities for patients with neurological disorders.

2. Protect Americans' access to health care.

Level of Government: Federal / National

Assoc. Legislation?:  H.R.1 - One Big Beautiful Bill Act (119th Congress)

About: Many patients with Chiari, syringomyelia, and EDS rely on state-sponsored Medicaid programs. Revoking federal funds or making them difficult to access could threaten healthcare for upwards of 500,000 Americans with these conditions.* Finding a clinician who understands these rare conditions is already challenging; denying access to care once a trusted provider is found adds insult to injury.

* - This estimate was generated partially using artificial intelligence, which collated publicly available prevalence data and applied it to the recorded U.S. Medicaid population. They represent an approximation due to lack of resources and may not reflect actual case counts due to underdiagnosis, miscoding, and data limitations. They should be interpreted with caution and are not a substitute for validated claims-based research.

Ask Your Elected Officials:

• Reject provisions that cut Medicaid funding. Proposed cuts, such as those in H.R. 1 that would reduce Medicaid funding by approximately $880 billion, would devastate access to care for millions of Americans, including those with chronic and rare neurological conditions.
• Oppose cuts to programs that would reduce coverage and increase premiums for millions , making essential healthcare inaccessible for many.
• Safeguard Medicare, CHIP and other vital healthcare programs to ensure patients retain access to necessary specialists, therapies, and medical equipment.

3. Join/participate in the Rare Disease Congressional Caucus.

Level of Government: Federal / National

Legislation: n/a

About: The RDCC is bipartisan (both Democrats and Republicans support it) and bicameral (members of both the House of Representatives and the Senate are able to participate).  This group of elected officials advocate for legislation and policy positions that directly impact Americans who live with rare and misunderstood diseases. You can learn more about the current membership of this caucus, its history and goals on the EveryLife Foundation's website.

Ask Your Elected Officials:

• Join the Caucus to signal your commitment to staying informed about challenges faced by rare disease patients , and collaborating with fellow members to develop thoughtful legislative solutions
• Champion policies that address unique challenges faced by the 30 million Americans with rare conditions

First, Figure Out Who You Should Contact

The best way to advocate is by developing a relationship with your elected officials and their legislative aides who work in the health care area.

But in order to develop a relationship, you need to know who your elected officials are and how to get in touch with them... The US is a big country, with a lot of different people working in government at various federal, state, and local levels.  Depending on the specific policy issue you are advocating for, the elected official you contact will change.

If you know what policy issue is most important to you, you can find the best official to reach out to using the following resources.

U.S. House of Representatives
You will only have 1 representative in Congress to represent your Congressional district in the House. Congressional districts are drawn up on maps by zip code.

Find your local elected official and their contact information on the House website, along with a legislative schedule.

U.S. Senate
Every state in the USA has 2 Senators in Congress. You can find your state's Senators, information about what Committees they sit on/upcoming meetings, a legislative schedule, and more on the Senate website.

State Senate & Other Legislatures
Once you get past the federal level, government structures start to look a little different based on your state. For example, New York state has an elected Assembly, while other states have different types of legislatures. Because of this, it can be hard to find a single list that will identify all your locally elected officials... especially because those officials can change with each passing election.

Luckily, there is a handy tool on USA.gov that helps you find and contact ALL federal, state and local level officials!

Enter your address information to find your officials: Find Your Elected Officials

Local governmental structure is even more specific and it becomes even harder to provide a single list.  For example, your local government might be a city council, while someone in another part of the country may be governed by a township.

Thankfully, you can use the same USA.gov tool mentioned above to find your most local-level elected officials: Find Your Elected Officials

Once you know your specific policy issue and the person who you are contacting to advocate, you can start to plan your advocacy!

There are several ways to contact your elected officials.  The best way to advocate is to develop a relationship with your official and make yourself (and the cause you represent) more memorable.

The bigger an impact you leave, the more likely officials and their staff are to consider your opinion when the time comes to decide policy. Here are just some of the ways you can get in touch...

1. Write a Letter/Email
You can write a letter or email to your elected official.  This is especially important during a letter-writing campaign or when there is an advocacy alert. If we send out an advocacy alert, there is an important piece of legislation that will directly impact patients and families that we need a lot of people to take action on! When you write your letter/email, you can request a template if you want somewhere to start.

2. Make a Call
You can also call your elected official's office and talk about your concerns. You can always write down your thoughts and read it like a script if you're nervous.

For federal representatives, there is also a Congressional switchboard at (202) 224-3121. An operator can connect you to your Senator or Representative's, staff if you don't call their offices directly.

3. Schedule a Meeting
This is, by far, the most impactful way to advocate!  Contact your elected official's office and ask about setting up time to talk to the official or their staff about something that matters to their constituent (that's you!). You can either do this on your own, or with a larger group as part of an Advocacy Day (see #5 below).

For federal- and state-level officials, they will often have more than one office-- one in the capitol (Washington, DC for federal reps and your state capitol for state reps) and another at a more local office.  You can request to meet officials or their staff at their home or DC office.  Some may agree to virtual meetings that can be taken from anywhere.

In your meeting, you will tell your personal story and finish up with your policy ask!

4. Attend Elected Officials' Events
Sometimes, elected officials host their own local, free events.  These may be campaign fundraisers, community benefit events, town halls, or others.

Attending these events close-to-home and introducing yourself is an easy way to stand out to your elected representative.

5. Participate in an Advocacy Day
BJCSF hosts advocacy days in Washington, DC that are attended by patients and families living with Chiari malformation, syringomyelia and related disorders like Ehlers-Danlos syndrome and more.

By attending an advocacy day in person, the stress of scheduling a meeting and crafting your ask is a little lower because it is often built-in to the day's events! Our 2025 Advocacy Day will be a part of our 2025 Together We Thrive Summit. If you would like to attend the Advocacy Day, only, please contact Cathy directly.

What Issues Do You Want to Champion?
Start by identifying the policy issues and legislation that mean the most to you. Check out the Why Advocate? tab to watch a few advocacy trainings, or follow along with this handout to effectively find and track legislation.

Writing Your Story/Ask
It's important to craft a story and an ask that is emotional and passionate but easy to understand!  Any written communication should be brief and to-the-point, but have the emotional impact that explains your "why".

If you can make it personal— definitely go there!  There is nothing more persuasive to elected officials than hearing about a certain political issue from the point of view of someone who deals with the problem on a daily basis.

In summary:

• Be brief, and to-the-point (no more than 1 to 1.5 pages)
• Be passionate, but polite
• Make it personal: tell your story

Once (or maybe even before) you feel ready: send that letter, make that call and meet with that staffer. You got this!

Templates
If you still feel like you need a little extra help, we do have templates and guidelines to help you write a compelling policy ask. Take a look, but remember that we really do recommend you make the templates your own. Generic looking form letters can be easily ignored on top of a whole bunch of generic advocacy letters.  We want your ask to be impactful and that can only be accomplished if you make it personal.

Upcoming Trainings & Workshops
We also hope to host a few virtual trainings and workshops. If you are interested, please let us know.

If you have any questions about advocacy or want to get more involved in your state or local policy areas, contact Kaitlyn!

References

1. Fitch B, Goldschmidt K, Cooper NF on behalf of The Congressional Management Foundation. Citizen-Centric Advocacy: The Untapped Power of Constituent Engagement. <https://www.congressfoundation.org/revitalizing-congress/communicating-with-congress/citizen-centric-advocacy-2017> Published 2017. Accessed June 20, 2024.
2. Senators Baldwin and Cassidy Introduce Bipartisan Legislation to Preserve Access to Treatments for Rare Disease Patients. May 11, 2022. Available at: <https://www.baldwin.senate.gov/news/press-releases/senators-baldwin-and-cassidy-introduce-bipartisan-legislation-to-preserve-access-to-treatments-for-rare-disease-patients-> Accessed June 20, 2024.

Revised: 5/2025