Hi Cure,

We said 2023 would be the year to Dream Big, and we’re already seeing it happen — check out the headlines, publications, and even a book being released about Angelman syndrome!

If you have updates you would like to be included in next week’s newsletter, please email us at info@cureangelman.org.

A new article in the Wall Street Journal profiles FAST and its innovative approach to help prepare for a future where cutting-edge treatments are available to those who need them. 

Read the article:

Sleep problems are highly prevalent in the AS community across all genotypes and typically are characterized by difficulties falling asleep, frequent bouts of waking throughout the night, and an overall decrease in the amount of time spent sleeping. This week we will feature a new publication looking at the effect of a behavioral intervention program on sleep in individuals living with Angelman syndrome.

Treatment typically utilizes medication to help alleviate sleep problems, however the work discussed here took a different approach and investigated the impact of a behavioral intervention program on sleep.

Read more about this new publication including the methods and results:

Last weekend, FAST Board and staff were honored to be with the top 2022 CAN Fundraisers at Dr. Jiang’s impressive lab at Yale. The group sat through a lab meeting, where we witnessed a live discussion about Angelman syndrome research. Afterwards, they were able to tour the Giraldez and Jiang labs for a hands-on, up-close-and-personal seat to the science.

On the rest of the trip, the group was able to connect and discuss all things relating to raising a child living with Angelman syndrome, how we can increase their fundraising efforts, and enjoyed some of NYC’s finest offerings. It was a fantastic opportunity for everyone to be among a group of people who all “get it” — people who understand the challenges of everyday life with AS, and who want to use that as inspiration to fight for promising therapeutics for all our loved ones.

It’s April, which means Ryan Fischer has officially joined the staff as Chief Operating Officer! 

Ryan will work in collaboration with FAST's President, Alana Newhouse, to establish, direct, and achieve the organization’s short and long-term strategic goals and objectives across all operational areas, including general administration, programs, grants, and external relations. He will maintain and build effective relationships with key stakeholders, including Congress, regulators, pharmaceutical companies, other foundation leaders, and the broader rare disease advocacy community. Prior to joining FAST, Ryan served as Chief Advocacy Officer for Parent Project Muscular Dystrophy (PPMD). Ryan held various roles within PPMD over 18 years helping to grow the organization into one of the leading rare diseases advocacy nonprofits globally. 

Ryan is open to connecting! We welcome you to email him to introduce yourself, ask questions, or share insights.

You can email Ryan at ryan.fischer@cureangelman.org.

Maxi is the mother of Gianluca, who lives with AS. This family resides in Argentina, and Maxi created the organization Casa Angelman, which is now part of FAST LatAm. Maxi recently wrote a book titled “Un Hijo, Una Casa, Un Maestro.” — “A Son, A House, A Master.”

For our FAST LatAm community, we welcome you to join the event in Buenos Aires on April 13, 2023 at 9:30 in the morning in the Malba Museum Auditorium, Buenos Aires, Argentina.

For the global community, add this book to your 2023 book list! It will go on sale on Amazon.com soon and will be translated into English by the end of the year.

Thanks for reading, and please share this link with anyone in your network who would be interested in receiving our weekly newsletter!