Take this FAST ACTION today: Contact your elected officials today and urge them to support our 2025 AS Legislative Priorities!

Tomorrow marks our 2nd Annual AS Congressional Advocacy Day, where passionate advocates take to Capitol Hill to meet with congressional leaders. Through personal stories and a united voice, we are driving meaningful conversations and making specific legislative requests to ensure Angelman syndrome remains a priority in the U.S. Congress.  

Our 2025 priorities include: Protecting Medicaid, Credit for Caring Act tax benefit, and supporting AS-specific focus and funding by federal agencies.   

We urge families, friends, researchers, and clinicians to amplify our voices by reaching out to your congressional leaders in support of the in-person advocacy happening right now on Capitol Hill!  

We’ve made it simple—with just a few clicks, you can send a powerful message to ensure Angelman syndrome remains a priority in Congress.  

Every email makes a difference!  

Click here to take action:

The Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting for Angelman syndrome has been rescheduled to Monday, April 7, 2025 at 10 AM EST.  

We are thrilled to have a new date and the opportunity for key decision-makers to hear our community's voice about the lived experience of our families and what matters most concerning emerging potential therapies.  

Learn more and RSVP if you have not already:

FAST is excited to launch our new educational video series, with short high-level animations breaking down each genotype of Angelman syndrome.  

Knowing the genotype of your loved one living with AS is important – for understanding certain behaviors and characteristics, family planning, and eligibility for participating in research and clinical trials. 

Watch your loved one’s genotype video today:

Global Genes recently released a white paper on clinical trial feasibility studies in rare diseases! Traditional methods often fall short in these unique populations, but our research – with contributions from Amanda Moore (CEO, ASF), Ryan Fischer (COO, FAST), and Terry Jo Bichell (FAC Member, FAST and CEO at Combined Brain) – shows that engaging patient advocacy organizations early and often can improve feasibility, boost success rates, and reduce both time and cost in drug development. 

Read the paper:

The Cure Angelman Network (CAN) is filled with dedicated supporters of our mission to bring a promising therapeutic to reality for individuals living with AS worldwide. We appreciate everyone who is doing their part to help and this month, we want to spotlight Matthew Gocker, resident of a small town in Wisconsin, for his recent efforts to raise money to benefit FAST in honor of Payslie, who lives in the next town over. He is a friend of the family who goes above and beyond! 

Read more and check out photos:

Angelman syndrome is a rare disease, and by being part of the Global Angelman Syndrome Registry, you help bring our global community together, strengthen advocacy efforts, and improve our understanding of prevalence and characteristics. 

When the Registry launched in 2016, genotype information wasn’t mandatory, meaning some records lack a confirmed diagnosis.  

Checking yours is easy!  

✅ Simply log in—your loved one's diagnostic result appears in the top left. If it’s blank, click "Update Diagnostic Information" in the same panel. 

If you're not yet registered, it’s harder for us to advocate for our entire community. Be counted—your participation matters! 🌍💙  

Enter the registry here:

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