Global Science Summit & Gala: Pre-Event Checklist

The Global Science Summit is filled with scientific terms, acronyms, and concepts that can be complex.  

Review the agenda and the current AS drug development pipeline – if there are terms you are not familiar with such as AAV-GT, UPD, translational research, UBE3A, ask gene!   

How to chat with gene:  

• Go to https://gene.cureangelman.org  

• Click sign up > enter your email (no password creation needed)  

• Watch your email for a magic link (may take 3-5 minutes to hit your inbox)  

• Click the magic link and start chatting!  

Want to go back for more? Head back to the link and simply log in > wait for your magic link > and start chatting! 

This meeting gives families the opportunity to discuss your questions with a certified genetic counselor who specializes in Angelman syndrome. As a genetic counselor, Niki understands complicated genetics. As a member of the FAST team, Niki has an in-depth understanding of AS specifically.

Niki is able to deep dive into your genetic report, offer insight on clinical trials and studies, and answer general questions you have around AS genetics and all the complexities.

Having this information before you arrive may help you as you listen to the Global Science Summit presentations and chat with community members.

• Schedule a virtual appointment with our certified Genetic Counselor before you come to Orlando. 

• Schedule now

We are excited to have 7 specialists available on-site in Orlando for private 1:1 appointments for families.

Our specialists will be available for personalized consults in Physical Therapy, Occupational Therapy, Speech Therapy, Neurofeedback, Vision Education, and Feeding & Swallowing.

Schedule now

The FAST Gala on Saturday evening is a community celebration and FAST’s largest fundraiser of the year.

If you feel moved by the FAST Global Science Summit, and all the progress in Angelman syndrome research, we encourage you to participate in the paddle raise.

• What is a paddle raise? An auctioneer will announce different giving levels and ask you to raise your paddle at the level of generosity you are comfortable with. Every gift, no matter the amount, will make an impact. Thank you for your consideration.

Many families will bring a printed photo of their loved one to raise proudly with their paddle during their giving. If you feel moved to do this, bring a photo - fun and completely optional!

• Don't have the means or time to print one? No problem, we can help you onsite when you get to Orlando!

Are you bringing your loved one living with AS to Orlando? 

The Angelman Syndrome Natural History Study research group is hitting the road again! On November 9 and 10, you can find us in Orlando, FL!  

If you and your loved one with AS are attending the 2025 FAST Global Science Summit & Gala in Orlando, FL, we would love to see you for a follow-up or first-time visit! 

Here’s what you can expect from a visit with the study team: 

• At the visit, a psychologist will administer a developmental assessment to your loved one with AS. You’ll also meet with a geneticist for a brief physical and neurological exam.  

• After the visit, you will meet virtually with the study team again to complete medical and developmental history and complete a set of questionnaires about your loved one with AS. 

For any questions about additional information or scheduling, please reach out to Maddie at maddie.gramling@childrens.harvard.edu or give us a call at (617) 919-6008.   

The Global Science Summit is filled with scientific terms, acronyms, and concepts that can be complex.  

Review the agenda and the current AS drug development pipeline – if there are terms you are not familiar with such as AAV-GT, UPD, translational research, UBE3A, ask gene!   

How to chat with gene:  

• Go to https://gene.cureangelman.org  

• Click sign up > enter your email (no password creation needed)  

• Watch your email for a magic link (may take 3-5 minutes to hit your inbox)  

• Click the magic link and start chatting!  

Want to go back for more? Head back to the link and simply log in > wait for your magic link > and start chatting! 

Meet with FAST’s Certified Genetic Counselor while at Summit in Orlando! Niki can provide genetic counseling services, including explaining genetic testing and test results and talking about family planning. She can help educate you about clinical trials and potential therapies, to help you make informed decisions for your loved one.

Schedule now

We are excited to have 7 specialists available on-site in Orlando for private 1:1 appointments for families.

Our specialists will be available for personalized consults in Physical Therapy, Occupational Therapy, Speech Therapy, Neurofeedback, Vision Education, and Feeding & Swallowing.

Schedule now

The FAST Gala on Saturday evening is a community celebration and FAST’s largest fundraiser of the year.

If you feel moved by the FAST Global Science Summit, and all the progress in Angelman syndrome research, we encourage you to participate in the paddle raise.

• What is a paddle raise? An auctioneer will announce different giving levels and ask you to raise your paddle at the level of generosity you are comfortable with. Every gift, no matter the amount, will make an impact. Thank you for your consideration.

Many families will bring a printed photo of their loved one to raise proudly with their paddle during their giving. If you feel moved to do this, bring a photo - fun and completely optional!

• Don't have the means or time to print one? No problem, we can help you onsite when you get to Orlando!

Are you bringing your loved one living with AS to Orlando? 

The Angelman Syndrome Natural History Study research group is hitting the road again! On November 9 and 10, you can find us in Orlando, FL!  

If you and your loved one with AS are attending the 2025 FAST Global Science Summit & Gala in Orlando, FL, we would love to see you for a follow-up or first-time visit! 

Here’s what you can expect from a visit with the study team: 

• At the visit, a psychologist will administer a developmental assessment to your loved one with AS. You’ll also meet with a geneticist for a brief physical and neurological exam.  

• After the visit, you will meet virtually with the study team again to complete medical and developmental history and complete a set of questionnaires about your loved one with AS. 

For any questions about additional information or scheduling, please reach out to Maddie at maddie.gramling@childrens.harvard.edu or give us a call at (617) 919-6008.   

Live translations in over <X> languages will be available at the Global Science Summit. Be sure to bring a set of headphones with you to listen on your mobile device.