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FAST: Our sole mission is a cure

Hi Cure, happy Rare Disease Day.


We’re joining the National Organization for Rare Disorders (NORD) and other rare disease organizations in Washington, DC this week to honor Rare Disease Week. We look forward to sharing more information about our efforts next week!


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

Clinical Trial Basics - Pillar 4

Jennifer speaking at the 2022 Global Science Summit and a slide from her presentation about trial phases

This week we are going to highlight Pillar 4 - Accelerating and Preparing for Clinical Trials in our Roadmap to a Cure 2.0. We will feature a 2022 Science Summit presentation titled, “Clinical Trial Basics: What Parents Need to Know About Trial Participation” presented by Jennifer Panagoulias, our head of regulatory and policy as well as the co-director of ABOM. This talk was extremely helpful in breaking down the basics of what a clinical trial is and providing useful questions to consider and ask for anyone interested in enrolling themselves or a loved one in a clinical trial.


Understanding clinical trials and the options for your loved ones can be overwhelming and often complicated. Click below to learn more so you can make informed decisions for your family:

Learn more about clinical trial basics

Announcing new FAST fellowships

Announcing two new FAST fellowships: Dr. Xiaona Lu and Dr. Xin Yang, with photos of Dr. Lu and Dr. Yang

FAST is excited to announce two new fellows: Dr. Xiaona Lu at Yale University and Dr. Xin Yang at Brown University. Fellowships such as these are important not only in supporting fundamental research that align with our Roadmap to a Cure, but also in providing opportunities to help build the next generation of scientific leaders to support and expand AS research. 


Dr. Lu is a postdoctoral fellow mentored by Dr. Yong-Hui Jiang, and her work will focus on reactivating the paternal UBE3A gene, which falls under Pillar 2. Her career focuses on research that aims to improve the quality of life of individuals with genetic disorders, including Angelman syndrome. Her current training in Dr. Jiang's lab at Yale Genetics provides her the opportunity to explore and develop therapeutic strategies for individuals with Angelman syndrome. 


Dr. Yang is a postdoctoral fellow mentored by Dr. Alvin Huang, and his work will focus on oligodendroglial dysfunction in AS, which falls under Pillar 3. Dr. Yang joined Dr. Huang’s laboratory at Brown University for a shared vision of innovation in research. Leveraging the induced pluripotent stem cell technique and traditional mouse models, his current focus is to understand the role of UBE3A in oligodendroglial physiology and pathophysiology, which could potentially accelerate the translation of novel therapeutic candidates for Angelman syndrome. 


Learn more about these fellowships:

Learn more about the new FAST fellowships

Community Spotlight: Whitney Causey

Community Spotlight: Whitney Causey - with a photo of Whitney posing, a photo of Whitney embracing her daughter M'Lynn, and Whitney's painting of M'Lynn

We have such talented community members, and this week we’d like to introduce to you one of them: Whitney Causey!


Whitney is the mother of M’Lynn, who lives with Angelman syndrome, and resides in Louisiana with her family. She is an Assistant Professor of Studio Art at the Louisiana Tech University School of Design. Since M’Lynn’s diagnosis in 2017, Whitney has utilized her artistic background in the AS community to change and challenge the way Angelman syndrome is viewed and understood.


Read more about Whitney and her art:

Learn more about Whitney

Join the 2023 CAN Fundraising campaign!

Dream Big - FAST 2023 Cure Angelman Now (CAN) Campaign, with logos for Facebook, Amazon, Starbucks, and Apple

We already have 34 Cure Angelman Now (CAN) pages set up and $46,334 raised - and it’s not even March yet! We are excited to see what 2023 brings and how our community can get creative to raise funds to help FAST bring transformative treatments to all people living with Angelman syndrome. In previous years, we’ve seen events such as golf tournaments, Easter egg hunts, cook-offs, cornhole tournaments, block parties, and even frozen turkey bowling (who knew that was a thing?!) 


For those fundraising in the US, did you know?


  • FAST offers fundraising gifts for those who raise at least $1,000? This year, we are awarding gifts such as gift cards to Amazon and Starbucks as well as iPads!
  • The top 8 fundraisers + 2 random winners will be eligible for the GRAND PRIZE, an all-expenses-paid trip to a location within the United States to meet with a top FAST-funded researcher and be a guest of honor at a dinner with FAST board members and other families! 
  • Facebook fundraisers are an easy way to generate funds to your CAN page. Read more about how to set up a Facebook fundraiser.


What are you waiting for? Create your CAN Page today:

Create your 2023 CAN fundraising page

Close of the Emergency Hotline

The FAST-Funded Angelman Syndrome Emergency Care Hotline has been discontinued, with an image of a phone

We regret to inform you that the FAST-Funded Angelman Syndrome Emergency Care Hotline (tel: 800-525-4871 / 720-777-0015) has been discontinued. There were a number of challenges with staffing of the answering service and knowledge of the specific on-call provider for the Angelman line, which caused calls not to be routed to the appropriate provider. Other avenues for seeking help (including social media) also impacted the number of calls to the line.


For emergency seizure support, we encourage families and providers to reach out to the Epilepsy and Seizures 24/7 helpline through the Epilepsy Foundation for high-quality care for your loved one.

Thanks for being such a valued member of our community, Cure.


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

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