We understand the uncertainty surrounding recent developments, especially with potential changes to federal funding that could impact the Fragile X community. Please know that we are closely monitoring the situation and working with our strategic partners to stay informed.
As a non-partisan organization, we are committed to advocating for the progress of research and the well-being of families impacted by Fragile X. Our team is always ready to take action when the opportunity arises. We are in this together, and we will continue to work tirelessly for the progress of the Fragile X community.
Many of you have reached out asking, “What can we do to help”?
With the current Continuing Resolution (CR) funding federal programs set to expire on March 14, 2025, decisions on federal spending, including funding for Medicaid, are fast approaching. Many of you are concerned about how these changes could affect critical services for individuals with Fragile X. The CR provides temporary funding and paves the way for upcoming budget discussions and potential changes in federal spending. The Budget Reconciliation process is one of the potential mechanisms that may be utilized during this time.
What is Budget Reconciliation?
Budget reconciliation is a legislative process that allows Congress to make adjustments to revenue and spending laws. This process enables changes that align with budget priorities, such as reducing the deficit or funding specific initiatives. Unlike traditional legislation, which requires a 60-vote threshold to overcome a filibuster in the Senate, reconciliation bills can pass with a simple majority vote. This fast-track process can lead to significant changes in federal programs, such as Medicaid, which is vital for individuals with Fragile X.
One actionable way you can make a difference is by advocating now to protect Medicaid.
Why It Matters for the Fragile X Community
Medicaid provides essential healthcare, therapies, and services for individuals with Fragile X. Currently, there are nearly 711,000 people with disabilities on waiting lists for services they are eligible for—highlighting the ongoing need to strengthen, rather than reduce, these programs. Any cuts or changes to Medicaid could impact access to vital support for many families in the Fragile X community. It’s important that we continue to advocate for these services, ensuring that they remain available and accessible.
Make Your Voice Heard
The budget reconciliation process is moving forward, which presents an excellent opportunity to make your voice heard in support of Medicaid. Reaching out to your legislators only take a few minutes, but it can have a meaningful impact.
Visit The Arc’s Medicaid Action Page to send a message to your legislators and advocate for Medicaid protection. It’s a simple yet powerful way to advocate for the Fragile X community during these critical budget discussions.
A special thank you to The Arc for creating this powerful tool, empowering all communities to take action.
Your advocacy is a key part of ensuring continued support for individuals with Fragile X. Let’s work together to make our voices heard!
about
Missy Zolecki
Missy joined NFXF team in 2018 after being an active volunteer since 2010. Missy organized several fundraisers and educational workshops while serving in her volunteer role. Missy is the mother of three children. Her eldest son, Matt, lives with Fragile X syndrome. Prior to joining the NFXF team, Missy had worked as a nurse for more than 20 years. She enjoys traveling and spending time with family and friends.
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