Hi Cure,

With just 87 days left until the 2023 FAST Global Science Summit and Gala, we’re calling for members of our community to submit photos to be featured in this year’s Gala video. We want to see meaningful moments from your families’ lives that we can celebrate together in Miami – learn more below!



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

This month, AS advocates from across the country are participating in Rare Across America. This program, organized by The EveryLife for Rare Diseases, provides the opportunity to meet with members of Congress to educate them about Angelman syndrome and issues important to the rare disease community. Thank you to all the participating families!

Advocates are recommending that members of Congress:

• Join the Rare Disease Congressional Caucus and cosponsor two pieces of legislation, if they are not already:
• The Safe Step Act (H.R. 2630/S.652) aims to streamline the process of getting access to medications without having to go through a medication not recommended by their physician.
• The HELP Copays Act (H.R. 830/S.1375) aims to require that insurers count third-party copay assistance programs toward a patient's deductibles or out-of-pocket maximums.

Along with these requests, advocates are also spending time to ensure Congress understands Angelman syndrome and its impact on families. The goal is to not only advance rare disease legislation but also create congressional champions for our community. 

It’s not too late for you to take action! Click here to learn more about how you can lend your voice:

As we prepare to gather in Miami for the 2023 FAST Global Summit and Gala (just 87 days away!), we need FAST families worldwide to submit photos of key moments from the lives of your loved ones living with Angelman syndrome for the chance to be featured in the 2023 Gala Video. 

Each year’s video is a major highlight! It’s a powerful reminder of all of the peaks and valleys we go through as a community (you can click here to watch last year’s version) - and we want you to be in it. 

We’re especially looking for photos highlighting any of these moments:

• Individuals living with AS accomplishing something new;
• Individuals with AS or their caregivers overcoming an obstacle
• Parents interacting with their children living with AS, going about your daily lives;
• Individuals with AS interacting with members of the community, such as therapists, or other AS families.

We want to see all of the beautiful moments from the last year – and we hope to see your photos featured in November!

Submit your photos now via our Google Form:

On Friday, July 28th, Anthony and Katie Poerio hosted their 2nd Annual James CAN Golf Outing to help raise money for FAST – a cause so close to their hearts because their son James lives with Angelman syndrome. 

They welcomed about 75 golfers and lunch guests to their outing. The guests enjoyed raffle prizes and silent auction items, in addition to a round of golf and lunch. While there were a number of golfers who came out for the second year in a row, Anthony and Katie were so excited to see many new faces this year and only hope that the event continues to grow year after year. 

With all of the planning and preparation, they were able to raise $50,000 this year to benefit FAST reaching $100,000 in just two years! Thank you to the Poerios for your amazing efforts!

See photos from the event:

After a short weather scare, Harper’s Hope hosted another successful CAN event for the third year in a row, with some repeat golfers and new faces helping to raise $28,300 – bringing their 2023 fundraising totals up to $54,800 to benefit FAST!

Joanna and Derrick received tons of compliments on the great event and community leaders reached out wanting to do more to help FAST! 

At each outing, they are blown away by all the generosity – not just generosity of money, but also of people’s time, willingness to volunteer, offering to pick up raffles, door prizes, t-shirts, etc. There is no way that the Webb family would have the success they’ve had with Harper's Hope without all the folks that absolutely give 110%!

Harper and her family were featured in an article in Owensboro Parent, helping to shine the spotlight on Angelman syndrome and Harper's journey. As always, Johnna and Derrick will not stop until we have a CURE for all individuals living with Angelman syndrome.  

Read the article featuring Harper:

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