Hey Cure, happy November!

Before you dive in, we just wanted to quickly remind you that the last day to purchase in-person tickets for the 2022 Science Summit and Gala is Friday, November 18th. [You can purchase tickets here]

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

We are excited to announce that FAST has extended its partnership with Duke University School of Medicine to gather and document rigorous evidence to support the validity of the Observer-Reported Communication Ability (ORCA) measure for use in clinical trials for individuals living with Angelman syndrome. 

Click here to read more about this partnership with Duke:

Join Dr. Allyson Berent & Jennifer Panagoulias for a series of intimate chats about all things related to gene and disease modifying therapies. This opportunity for an “off the record” conversation with FAST’s science experts is a unique experience you don’t want to miss. 

Allyson and Jennifer are here to educate and discuss on an ongoing basis. Topics will be chosen by YOU! What do YOU want to know related to gene therapy, cell therapy, endpoints, biomarkers, the basics of clinical trials and what you feel you need to know? Send your topic requests to info@cureangelman.org. Allyson and Jennifer will prepare for an open dialogue and helpful discussion, because KNOWLEDGE IS POWER.

FIRST Genes & Juice Chat

WHEN: Tuesday, November 15th from 8:30-9:30pm EST (New York)

SIGNUP INFO: 15-person cap to maintain an intimate setting (you will receive a Zoom link prior to Nov. 15 to access the meeting)

Click here to submit your name if you’re interested in joining the first Genes & Juice chat!

Chats will be held on the 3rd Tuesday of the month, every other month, starting November.

Check our events calendar to save the dates for the 2023 chats:

FAST Canada is run by a volunteer board of Angelman parents, and supported by friends and family members strongly connected to the Angelman community. After a number of years of hard work to navigate the strict Canadian regulatory requirements, official charitable status was achieved in 2018, and Noah Firestone took the lead as the chairperson.They work closely with FAST USA to help co-fund projects as well as support the mission to cure Angelman syndrome.

Click here to read more about FAST Canada:

Name, Title at FAST: Laura Foglyano, Meetings & Operations Manager

A message from Laura: First and foremost, I am so excited to be part of such a dedicated, hardworking organization. The people I have met so far are incredible.  As a mom, I am so moved by the lengths that I've seen parents (and grandparents and extended families and friends and countless others) go to care for their children, and how committed they are to finding a cure.  

Although I don't personally have a loved one with Angelman syndrome, I promise you that I will use all of my skills and past experience to help the AS community. I hope that my background in healthcare marketing and fundraising (mostly centered around planning events) will help FAST stay organized, efficient and focused on its mission.

How you will support FAST’s mission to a cure: One of my primary responsibilities is planning the annual Science Summit and Gala.  I also support CAN fundraisers, and am helping launch a brand new platform for peer-to-peer giving and fundraiser events hosted by AS families, coming in 2023!

What did you do before FAST? I spent the last 17 years working in Philanthropy and Marketing at Cleveland Clinic.  I planned events ranging from large gala fundraisers and hospital grand openings to a Presidential Debate.

5 fun facts about you!

1. My husband Ryan and I have two kids, Julia (9) and Charlie (4), and a rescue dog named Sam.
2. We live in Shaker Heights, Ohio, a suburb of Cleveland.
3. My first job as a teenager was working in an ice cream shop. My love of ice cream continues, and I even judged a contest for the best ice cream in Cleveland once.
4. I have traveled near and far to see my favorite band, Better Than Ezra, in concert at least 30 times. Yes, my taste in music stopped in 1999.
5. I'm looking forward to meeting more of the FAST community at our Science Summit and Gala in December!

On October 16th, Chrysti and Derek Matheson held the 2022 Remi Cup golf tournament at the Cherokee Hills Golf Club in Tulsa, Oklahoma in honor of their daughter Remi, who lives with Angelman syndrome.

Over 75 golfers played, and the golf tournament raised over $25,000 for Remi’s Drive for a Cure, which will be donated to FAST.  

The Matheson family said, “we are excited to make the Remi Cup an annual event in Tulsa!”

Check out more photos from this successful event:

See you at Genes & Juice!

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