Hey Cure,

Happy early Veteran’s Day! We honor all the members of the FAST community who have served. Thank you for your service. 

Today, we’re very excited to announce our 2022 CAN Grand Prize winners! 🏆

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

On November 1, Alana Newhouse hosted the second fireside chat since she stepped into her role as President of FAST. She was joined by FAST Board Member, Lauren Hoffer, as well as a special guest: Preston Campbell, former President and CEO of the Cystic Fibrosis Foundation (CFF).

During the hour-long chat, the community learned how CFF played a role in patient access to drugs for their community, as well as how FAST can and should start thinking about the issue.

Preston was impressed with how fast we are making strides in our efforts to find a cure — recognizing the work of Lauren and the whole FAST team, and praising how much FAST has accomplished in a short period of time.

Click here to read the full recap from November’s fireside chat:

In 2019, FAST Italy was formed and is currently led by chairperson, Augusto Maggi. The Italian community first learned of FAST USA in 2017 and wanted to provide hope for AS families in Italy. Their goal is to educate families around Angelman syndrome and the science behind it.

Click here to read more about FAST Italy:

Community fundraising is critical for FAST to support our roadmap to a cure, so we want to sincerely thank everyone who organized and supported a CAN (Cure Angelman Now) campaign this year. 

In 2022, we had 58 CAN pages created by the community. Of those 58, we are pleased to announce our 2022 CAN Grand Prize Winners. These top fundraisers have won a day with FAST-funded researcher Dr. Albert Keung and his team in the North Carolina State University’s lab! We applaud and appreciate the hard work these families did hosting in person events, asking for donations, and bringing awareness to Angelman syndrome!

$146,538 Will.i.CAN Edberg - The Edberg Family

$79,072 Orion Beatty - The Beatty Family***

$65,106 Harper’s Hope - The Harper Family

$55,000 Hopeful Halos Foundation - The Werner Family

$53,390 Help Cure James - The Poerio Family

$51,025 The Miraculous Miss Maddie - The Sargent Family

$48,062 Sutton Strong - The Smith Family

$45,197 Team Maddy - The Jacobsen Family

$42,983 Charlie’s Angels - The Cutler Family

***(FAST board member, not eligible for the Grand Prize)

We are looking forward to sharing our CAN fundraising total with you at the 2022 Global Science Summit and Gala on December 2-3, 2022 in Miami, Florida!

Name, Title at FAST: Kena Richert, Chief Financial Officer

A message from Kena: On March 16, 2006, my daughter Ashley was diagnosed with Angelman syndrome, and that has to be my most difficult challenge to face. I cried. Denied. Cursed. Bartered for a test failure. Not my best showing but certainly authentic. We first attended CASS, the Canadian AS conference, in 2006 shortly after her diagnosis. Thereafter, we hosted various fundraisers, and in 2008, I was one of the founding board members of FAST. I served as Treasurer and CFO on the board until 2020, at which time I transitioned into a full-time, paid position as CFO. 

Walking it forward 17 years, I am not sure I’ve fully completed the grief cycle and accepted. I’m not sure I can. I adore every fiber of Ashley, and we have advocated for her and supported her every step of the way. But, I know there is better out there for her, and I know it’s achievable. So, I use my talent and resources to rise to her needs and serve in the best way I know how. Every day presents an opportunity to serve our kids, and I will continue to do this until the job is done.  When all our kids start talking, run around the playground, and gain a high degree of independence, it may be a bit harder to show up for work. Until then, I will work hard for our community. 

How you will support FAST’s mission to a cure: I will continue to serve our AS community and our mission at FAST in my role as CFO by maintaining a high degree of integrity and fiscal responsibility with our precious donor dollars. All our children, including Ashley, expect nothing less.

What did you do before FAST? Prior to FAST, I was in the assurance practice serving Fortune 500 companies at PriceWaterhouseCoopers LLP. I also spent several years in accounting in the nonprofit sector. 

5 fun facts about you!

1. It took me 40 years, but I’ve finally come around on sushi!
2. Peloton and I have developed a decent relationship the last couple of years – KenaFAST4ASmom – it’s therapeutic and great prep for the next sit-down protest at the grocery store.
3. Unlike many of our children, my affinity for water isn’t genetic. I always strive to find my way to water on vacation.
4. Countless hours of various exercise classes, running, and lifting never prepared me for shaving Ashley’s legs.
5. I love to hike in the summer and snow ski in the winter.

Congrats again to our 2022 CAN Grand Prize Winners — get ready for another year of friendly competition in 2023!



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