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FAST What to Know
FAST Action

Take this FAST ACTION today: Submit an “AS in ACTION” photo of your loved one today!  

FAST Community Photos

Submit a photo or video of your loved one with Angelman syndrome today for a chance to be featured on social media in the coming weeks and months.


Some moments to highlight ‘AS in action’: Walking with a gait trainer, eating with a spoon, laughing, swimming, or at therapy!

Submit a photo now
EL-PFDD Meeting, April 7: Be your loved one's voice by submitting a comment today.

The virtual Externally Led Patient Focused Drug Development (EL-PFDD) meeting is rescheduled for April 7th at 10am EST. The information gathered and shared during this meeting helps shape the future of therapy development for Angelman syndrome creating a map or a playbook into the lived experience of families. This playbook can then be used by the FDA and industry leaders to better understand AS and make informed decisions from the voice of the community. 


It's critical that the AS community joins this event. If you have not already, please: 

  • RSVP to the event and mark your calendars 
  • Submit a written comment 


Participate today by RSVPing and submitting a comment:

Participate today
AS Caregiver Survey Results

The Economic Burden of Caring for Individuals with Angelman Syndrome


Caring for a loved one with Angelman syndrome (AS) places significant financial and emotional demands on families. A recent study surveyed 105 U.S. caregivers to better understand the economic impact of caregiving for individuals with AS, revealing an average annual financial burden of nearly $80,000 per household.


Key Findings:


🔹 Employment & Work Productivity Loss: The largest cost, averaging $42,697 per year, comes from caregivers needing to reduce work hours, take unpaid leave, or leave their jobs altogether. 

🔹 Household Expenses: Families spend an average of $29,680 per year on goods and services to support their loved one with AS. 

🔹 Lost Leisure Time & Caregiver Healthcare Costs: The study also found that caregivers experience an estimated $6,634 per year in lost personal time, as well as $827 in additional healthcare expenses due to the physical and emotional toll of caregiving.


Why This Matters


These findings highlight the substantial financial and personal sacrifices that families make to provide care. By better understanding these economic challenges, we can advocate for greater support, policy changes, and therapeutic advancements that could help alleviate the impact on caregivers and families. 



This research underscores the urgent need for resources, services, and potential treatments to improve the lives of individuals with AS and their families.


Read the paper:

Read now
2025 FAST Global Science Summit & Gala

Plan ahead for the 2025 FAST Global Science Summit & Gala now! 


Now is the time to start thinking about travel plans for our 2025 event!  You won’t want to miss our Community Event, which will now be held on Thursday night.  Further information about scholarships, hotel rooms and event registration will follow this summer.


2025 Schedule of Events:

  • Thursday, November 6: Community Event from 6 to 8 pm
  • Friday, November 7: Global Science Summit from 8 am to 5 pm
  • Saturday, Nov. 8: Global Science Summit from 8 am to 1 pm; Gala from 6 pm to midnight

 

International Guests - If you live outside of the United States and will need a visa to travel to the US, please consider applying now. FAST is here to help if you need a letter of invitation to accompany your application!  Just email events@cureangelman.org for assistance.

 

Learn more about the 2025 Summit & Gala:

Learn more
2025 Fundraising for FAST

Fundraising might feel overwhelming at first, but don't worry — our user-friendly online platform allows you to create a personalized fundraising page quickly and effortlessly.


You can add your own story or keep it simple, whether hosting a lemonade stand, organizing a golf outing, or sharing a link on social media.

 

Use your page to honor special occasions like birthdays, anniversaries or just because!


The possibilities are endless, and we're here to help you every step of the way.


Create your CAN page today:

Create your page
Join FAST at the 2025 MENA Congress for Rare Diseases – Apply for a Free Ticket!

We are thrilled to announce that FAST will once again be part of the MENA Congress for Rare Diseases, taking place in Abu Dhabi, UAE, from April 17-20, 2025! This prestigious event brings together experts, advocates, and families from around the world to discuss the latest advancements in rare disease research and treatments. 

  

Mark your calendar for Sunday, April 20, from 8:30 AM to 10:30 AM, when Mrs. Amelia Beatty (FAST Board of Directors) and Ellen Koekoeckx (FAST Global Advisor) will present the latest developments in the Angelman syndrome therapeutic pipeline. This session will provide key insights into ongoing research and potential treatments. 

 

Learn more about the Congress.

  

As a proud sponsor, FAST is offering a limited number of complimentary registrations for those who wish to attend in person. This is a wonderful chance to connect with the rare disease community and stay informed about the future of Angelman syndrome treatments.

 

🔗 Apply by Sunday, March 23, 2025, to receive a complimentary registration:

Apply today

We can’t wait to see you in Abu Dhabi!

Did you move?

We want to make sure we have your most up-to-date contact info! If you’ve moved or changed any of your contact details, please send us an email to info@cureangelman.org so we can stay connected.️ 


Thanks for helping us keep our records current! 

Thanks for reading, and please share this email with anyone in your network who would be interested in receiving our updates.

Six children with Angelman syndrome are pictured
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