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FAST: Our sole mission is a cure
 

Hi Cure,


We hope you were able to catch all of the updates from the 2022 FAST Global Science Summit & Gala. We had a great time, and we’re already looking forward to next year!


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

 

Research Update: New Clinical Trial from Roche

Roche Genentech Alogabat Study

As mentioned at the 2022 FAST Global Science Summit, a new clinical trial will be starting in 2023 from Roche. This trial will test the Alogabat drug as a treatment for Angelman syndrome individuals with the deletion genotype, as it is targeting the GABA genes that are missing in those individuals specifically. 


Click here to read the community letter announcing the Alogabat Study in Angelman syndrome:

Read more about the Alogabat Study
 

Please take the Caregiver Impact Survey!

Caregiver Impact Survey: takes 20mins + helps FAST = FREE Backpack

FAST Community – please help us make sure insurance companies cover new Angelman therapeutics once they are approved!


We need 200 families to fill out the Caregiver Impact Survey — a survey that will quantify your lost work hours, costs, and time spent caring for loved ones with Angelman syndrome.


This will help put data in front of payers to make sure they can’t ignore these costs. We kicked off the survey at the FAST Global Science Summit, but still need some more responses to hit our goal — we need to hear from you!


→ In case you missed it, you can watch presenters at the summit talk about the importance of this work here.


→ Participants will receive a free FAST Backpack (while supplies last)! Once you complete the survey, click here to request a backpack.


The link below will take you to the survey on the Global Angelman Syndrome Registry site. For now, this is only available to U.S. families — we are hoping to include more countries soon! 

Begin the Caregiver Impact Survey

If you have any trouble getting into your Global Registry account, please see troubleshooting tips here or contact curator@angelmanregistry.info. Please remember to save your responses!

 

Meet FAST Staff: Meghan Edberg, M.Ed

Meghan Edberg
 

Dear AS Community,


If you thought I wasn't going to give you a gift this holiday season, you thought wrong :)


It is my absolute thrill and honor to welcome FAST's first on-staff director of community engagement: Meghan Edberg! Those of you who know Meghan probably know her as a fellow parent or as one of our community's most committed family fundraisers. What you might not know is that she is also a tremendously gifted communicator, a skilled professional capable of managing a dozen spinning plates at once, and a parent deeply committed not simply to FAST — but to the entire AS community. I'll let her tell you a bit more about herself below, but hope you'll all ask your questions at my next fireside, where she will be one of the featured guests.


xo,

Alana

 

Name, Title at FAST: Meghan Edberg, M.Ed, Director of Community Engagement


A Message from Meghan: When my son, William, was diagnosed with AS/mutation on January 7, 2020, it was such a bittersweet day. We knew the cause of his delays (finally!) yet we had no idea what AS was and thus started the Google search. As expected, all the emotions were raging as our family grieved our new reality. However, in true fashion of how I live my life, I told myself, “I cannot control this diagnosis, but I can control how I react.” So it wasn’t long before I dove into the AS community to bring awareness, raise funds, and fight for a cure with everyone else. Together with my crew, we raised over $500,000 in 3 years, have brought awareness to AS through my son’s story (willican.org), and have recruited so many to join this journey with us. If we can do it, so can you!


That said, I am thrilled to join FAST to enhance community engagement so we can be a strong, united front, to cure this damn thing! Until our mission is fulfilled, I am committed to working hard, leveraging my skill set, parent perspective, and passion so our loved ones may one day have a more independent life.


How you will support FAST’s mission to a cure: I will support all facets of how FAST engages with the community on a strategic, operational, and personal level. This includes but is not limited to outputs from FAST (newsletters, social media, and more), managing community engagement programs, and supporting those wanting to get more involved to support FAST’s mission.


What did you do before FAST? In the past 16 years, my career path has been unique in that I have had the opportunity to work with diverse populations in unique settings throughout the country and abroad. This has included teaching English to South Korea elementary students, mentoring NCAA Division I Athletes, teaching performance psychology to US Army Soldiers, counseling adult learners in higher education as well as using business acumen skills in higher education and technology. My titles have varied but what has stayed the same is my passion for helping people/businesses meet their goals.


5 fun facts about you!


  1. I love to travel - it’s the best when I can find a destination I’ve never been to and meet up with another AS family!
  2. I have a yearly, lifelong goal, of running the Twin Cities 10k race every October. I started in 2009 with its inaugural race and haven’t missed one yet!
  3. I’m adopted from South Korea and grew up in Minnesota. I have lived in several other states and abroad, and am now back in Minnesota with my husband Jesse and two children, William (who lives with AS), and Henry.
  4. I love to try new things - from skydiving to eating live octopus!
  5. I’m a former collegiate softball player getting into golf - pointers/tips are welcome.
 

PREVIEW - Meet FAST Staff: Nycole Copping, PhD

Nycole Copping

Many of you have already "met" Nycole Copping, PhD, our incoming science director, who graciously jumped in on social media to give us updates throughout the Science Summit and ensure parents and caregivers were able to follow the main take home messages from each talk throughout the weekend. She's on her honeymoon this week — congrats, Nycole! — but look out for next week's newsletter to learn more about her, and her role at FAST. We are excited for her to join our team!

 

Coming up in January: our next fireside chat

FAST January 2023 Fireside Chat: Sunday, 1/8 at 3pm ET - with Alana Newhouse, Nycole Copping, and Meghan Edberg

New year, new staff! Join Alana on January 8th at 3pm ET (New York) as she sits down with new FAST staff members Science Director, Nycole Copping and Director of Community Engagement, Meghan Edberg.


Click here to register:

Register for January's fireside chat
 

Get ready for a HUGE 2023 for FAST — let’s all Dream Big as we move closer to curing Angelman syndrome!



As always, please share this link with anyone who would be interested in receiving our updates.

The FAST community
FAST - CFC, Charity Navigator Four Star Charity, Platinum Transparency 2022
 
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