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Hi Cure,


With Father’s Day this weekend, we’ve created a fun way to recognize the great dads and father-like figures in our community — more details below!


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

 

INSYNC-AS Meeting recap

Photos from the INSYNC-AS meeting - a speaker, and people connecting - with the INSYNC, FAST, and SFARI logos

And that’s a wrap! The FAST team, SFARI (Simons Foundation Autism Research Initiative), industry sponsors, regulatory experts and 22 INSYNC-AS Council members, along with invited speakers and representatives from other rare neurodevelopmental disorder groups, including Rett syndrome, CDKL5 Deficiency Disorder, and STXBP1 Disorders, met in person last week in New York City for the 3rd Annual International Angelman Syndrome Research Council (INSYNC-AS) meeting!


It was an incredibly insightful and invigorating meeting that is helping to accelerate the Angelman syndrome drug development ecosystem at this pivotal time for AS. In addition, we were able to leverage so many learnings from many other rare disorder communities. 


Read more:

Read the full recap from INSYNC-AS
 

Genes & Juice June 2023

FAST Genes & Juice June 2023 - Tuesday June 20 at 8:30pm ET (New York) - with an image of two people having coffee and chatting at a table

Join Dr. Allyson Berent & Jennifer Panagoulias for their next Genes & Juice chat on Tuesday, June 20th!


This is an opportunity to have a small group discussion with two members of FAST’s translational research team where personal questions and parent/caregiver perspectives and preferences can be shared and discussed. It’s a unique experience you don’t want to miss! 


Think of it like you’re in a coffee shop learning and sharing about all things related to gene therapies and other disease-modifying approaches to help you understand the science. Remember, knowledge is power.


Please send any questions on this topic ahead of the chat to info@cureangelman.org


Cannot make it? Send us your questions to help us understand how we can help continue to educate the community about this topic. 


June Genes & Juice Chat

WHEN: Tuesday, June 20th from 8:30–9:30pm ET (New York)

SIGNUP INFO: 15-person cap to maintain an intimate setting

(confirmed attendees will receive a Zoom link on Friday, June 16th)


Click here to submit your name if you’re interested in joining this month’s Genes & Juice chat!

Submit your name to join the June Genes & Juice chat
 

CAN Spotlight: Harper’s Hope

CAN Spotlight: Harper’s Hope, with a photo of the Webb family posing together outside in front of sign about their event

For the last 10 years, Derrick and Johnna Webb have been fundraising to benefit FAST in honor of their daughter, Harper, who lives with Angelman syndrome. This year marks a significant milestone as they hosted their 10th Annual Harper’s Hope Golf Scramble in Yatesville, Kentucky. Prior to the event, they were just $10,000 shy of reaching $200,000 total raised.


The group of long-time supporters rose to the challenge — helping the Webbs raise $26,000!


Thank you, Derrick, Johnna, Hunter, Hayden, and Harper for your commitment to our mission and helping us raise critical funds to support the AS community!


Click here to see photos:

Check out photos from the Harper’s Hope Golf Scramble
 

Father's Day 2023

Happy Father’s Day! June 18, 2023, with a #1 Dad mug and a dad joke in a speech bubble - What did the biologist wear to impress his date? Designer genes

As Father’s Day approaches in the US and in many countries around the world, we wanted to give a shout-out to all of the dads, grandpas, father-like figures in the AS community! 


Submit someone today to be featured on social media this Sunday, June 18th!

Submit a FAST Fathers nomination
 

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

Six children with Angelman syndrome are pictured
FAST - CFC, Charity Navigator Four Star Charity, Platinum Transparency 2022
 
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