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and processes, not only to guarantee that all stakeholders are properly informed and aligned, but also to make sure outdated assumptions and procedures are discarded, and actions stay fresh and responsive.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.
FAST was founded with an urgent mission: to cure Angelman syndrome. As such, it is the organization’s responsibility to monitor and guide the process of drug development, globally, as it pertains to every possible pathway that might treat AS—beginning with the moment that the tiniest seed of insight lights up in a young researcher’s mind, through initial scholarly work, animal studies, human trials, global regulatory approvals, and then, finally, getting into the bodies of our loved ones. With operations in the United States, Australia, the UK, Canada, Italy, France, Spain and Latin America, FAST is now the largest non-governmental funder of Angelman syndrome research in the world.
There are currently ten promising methods to treat AS in the pipeline, including the program acquired this summer by Ultragenyx. We cannot stop at the first or the second idea when it’s our job to chase down every possible option, and to filter out the absolute best ones for everyone around the world living with AS—regardless of genotype, and regardless of age. FAST’s mission has always been to push science to bring about transformative and meaningful treatments for AS, and that mission has more wind at its back in 2022 than many would have predicted. We can now confidently say that curing Angelman syndrome is not only possible; it is probable. And FAST exists to make sure our global community gets to that future, as quickly and safely as we can.
I’ve put together a page on our website describing all aspects of FAST’s work, how they emerged and how each one contributes to our mission, along with the names of people or outfits associated with it.
It is a mark of FAST’s progress that the organization is at a point of professionalization. Until recently, FAST was mostly run by a working board of volunteer parents advancing important AS initiatives while also holding demanding day jobs. Starting now, our board—which will remain entirely volunteer-run—will shift its orientation from that of a working board to a strategic one. As an AS parent, I do not want these people spending their time looking for typos in grant contracts or negotiating paper costs for Summit agendas; I need them to be tasked with applying foresight, creativity and ambition to a drug pipeline that must continue to move safely but also quickly.
The daily work of the organization going forward will be done by paid staffers. Just as we want people with the deepest, most relevant experience working for us on the science of AS, we now need—like other successful rare-disease organizations, including the Cystic Fibrosis Foundation, CureSMA, Parent Project Muscular Dystrophy, and Rett Syndrome Research Trust, to name just a few—to bring in stellar staff talent to work on all aspects of advancing our mission, from messaging and development to pharmaceutical engagement and regulatory work.
Beginning today, I am not only the main address for information from FAST; I am also a conduit for information to FAST. My role as president will be to ensure the smooth and transparent flow of information between the cohorts that make up the FAST universe: the board, the staff, our global chapters, and the public, first and foremost. I will also be engaging the Scientific Advisory Board, a volunteer group of scientists who review grants, advise on new scientific ideas, and support ongoing programs in academia and in industry, as well as the FAST Advisory Council, another group of volunteers with professional skill sets necessary to advance priority programs and initiatives, like supporting government policy as it relates to state and national awareness of the needs of those living with Angelman syndrome, editing and writing scientific content for newsletters and blogs, supporting the biomarker and outcome measure consortium, and creating an army of representative families to ensure we stay aware of the needs of everyone in our worldwide community.
It is profoundly important that our community, as in all of us, be deeply informed and ahead-of-the-curve when it comes to research and development. This is a large and complicated universe—made up of thousands of researchers from all over the world, hundreds of pharmaceutical companies, clinicians, investors, educators, policymakers, and more. We represent a rare disease in this competitive space; our ability to attract attention to our cause comes in part from the maturity and sophistication of our community. It is FAST’s obligation to maintain a channel of the deepest and most up-to-date scientific information, and for it to be as accessible and engaging as possible for a diverse community.
Here are some ways this will happen:
> FAST main page (public). This is the place to go for research updates, FAST news, clinical trials, leadership changes, staff updates, and the like. These items include information featured in our newsletter, and which may be pre-scheduled or posted by the social media team, with monitoring by me.
> FAST Family & Friends (private, actively moderated). This is the place to go for polite, reasonable discussion around all of the above. It’s also where you’ll find people sharing personal stories or information, either unprovoked or led by administrators to start positive discussions.
I am committed to bringing more openness and engagement to our space. In exchange I will ask—and, if necessary, demand—that we all give each other a measure of grace and understanding, particularly on social media but in fact everywhere. That will also mean more active moderation of the above two groups, to ensure that our spaces are safe from bullying (intentional or not) and focused on productive conversations around AS and its possible treatments. Reasonable curiosity about the current inner workings of FAST, inquiries about how to better get to know board members or staff, and most importantly questions about science and research are all welcome. What will not be tolerated are attacks on anyone, FAST-affiliated or not; efforts to relitigate past experiences or decisions; perseverations about non-science subjects, and so on. We are trying to cure a rare disease here, not solve the mystery of who killed JFK. We don’t have time to waste.
This past spring, Elijah had a horrific reaction to a new seizure medication, and was in the hospital for a week. Huge swaths of his body, including his mouth and nose and face and torso and arms and whole back, broke out in a rash and then blisters, which soon burst and opened up gaping wounds all over his skin. On the worst night, when he was screaming in pain and I was growing terrified at my inability to help him, a nurse walked into our room to ask me what I know she thought was an innocent question. My response was awful—reactive, irrelevant, mean. I apologized profusely, but not a week has gone by when I haven’t thought about it and blushed with shame.
I tell this story to underscore that we are all earthly beings, tasked with the otherworldly duty to safeguard and move life forward for challenged loved ones. We are soldiers for them, but also can be so for each other. To the extent that I can, I want to help establish and maintain an environment that enables connection, collaboration and enrichment. I can’t do it without all of you.
This is my son. He’s the reason I found my way to FAST. But now I’m here also because of, and for, you and your loved ones. The people who work for FAST know that the end of AS is in sight, because they work on it every day. Everyone else in this community deserves to know that too, and to feel the incredible hope that comes with that knowledge. It’s my job to help bridge this divide.
Thank you in advance for letting me join this community! I promise to do my best to serve it well.