Hi Cure, we have exciting news:

Alana Newhouse is officially the new president of FAST! 

As a parent of a child with Angelman syndrome, Alana shares our sense of urgency to bring therapeutics forward — for all of our loved ones. 

We’ll let you hear more from Alana herself, below!

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

My name is Alana Newhouse, and I’m deeply honored to be writing to you as the new president of FAST.

In my professional life, I am the founder and editor-in-chief of Tablet Magazine. In my personal life, I am the mother to Elijah, an eight-year-old boy living with Angelman syndrome caused by a mutation.

I am new here, not just to FAST but to the AS community. It’s a long story—one I’m looking forward to sharing with everyone—but the short version is that we didn’t receive our official diagnosis until March 2022. I say “official” because in fact I diagnosed Elijah with AS from a Google search when he was 18 months old. (I told you it was a long story!) While I am new to this community, though, I am not new to parenting a child with Angelman syndrome. I may not have known it, but it’s what I’ve been doing for the past eight years.

In the months since our diagnosis, I’ve been privileged to come to know the people behind FAST, some people outside of it, and to get a window into the organization’s successes, missteps, challenges, and potential.

It’s clear to me that FAST is at a hinge moment in its own history, and in the history of AS—a juncture at which real change has happened, and more is coming down the pike. In these times, it is critical that organizations force themselves to rearticulate their work and processes, not only to guarantee that all stakeholders are properly informed and aligned, but also to make sure outdated assumptions and procedures are discarded, and actions stay fresh and responsive.

I am not a scientist or doctor (though, like all AS parents, I can easily play one on TV). But as someone who’s led another nonprofit organization for a decade and a half, I will try to bring some of my skills to bear on this task, and to ensure that the public can see the incredible progress being made in the world of rare diseases.

When he was little, Elijah’s favorite book was “We’re Going on a Bear Hunt,” and these days I wonder if he understood something we didn’t: “We can’t go under it, we can’t go over it. We’ve got to go through it.” This is a journey none of us chose to be on. The only thing we can do is go through it, together.

Click here to read Alana’s full letter:

Want to hear more from Alana directly? Read her full letter to find out more about her monthly fireside chats, starting this Sunday!

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