Where We’re At

Hi There

It’s been a while. For a few short years, this blog was a way of sharing my experiences living abroad. However, I always hoped it would be more than that. I called it "[placeholder]" as a nod to the importance I feel place has on my life. Among my goals was that I would continue to write and share here regularly, no matter where in the world I found myself. But the reality of being a mother—and more specifically, a mother in America—means I have had very little time and energy to dedicate to this pursuit once my family and I returned stateside.

I believe the place(s) we call home shape our views, our opportunities, and our well being. Home is the place that should feel safest and most comfortable, but upon returning to the US in 2023, I have often felt the opposite.

Grief and Loss

Of course, grief and hard times will find us no matter where we live. In the span of three-and-a-half years, I have lost my father, my godmother, and my grandfather. (We also had to say good-bye to our dog in that time span. And as I predicted in an earlier post, despite his many flaws, letting him go did indeed break my heart.)

And in early 2024, I experienced a new kind of grief when our son received a diagnosis that has altered the course of our lives.

Our son, whom I will call “O—” in this public forum, has Fragile X Syndrome. It is a genetic condition, and I was a premutation carrier and did not know it. If you care to learn more about the condition—which I had never heard of until last year—the Fragile X Foundation has published this list of 31 Facts about Fragile X that breaks things down pretty well. I am still very much in the learning phase myself, and likely always be.

Place matters when it comes to providing my son with care and support. The Individuals with Disabilities Education Act (IDEA), which is under the Department of Education, matters. The National Institutes of Health (NIH), which helps support the research and treatment of rare diseases, matters. And in America in 2025, all of these supports are under threat.

The Hope for the Future

Obviously, there are benefits to navigating Fragile X at home rather than abroad. There are no language barriers, and I have met amazing people who have provided incredibly valuable services to O— and our family. There is the Birth-to-Three early intervention program, which has supported us with a Physical Therapist, Occupational Therapist, and Speech-and-Language Therapist, and a case manager to keep it all straight. There are also the brilliant doctors and carers at Seattle Children’s, who have in turn connected us with the country’s leading Fragile X experts at other hospitals and universities.

These connections led to my husband and I participating in a call earlier this month: the 2025 NIH Fragile X Centers of Excellence Update. As best as I can explain it, the Centers of Excellence comprise top geneticists, researchers, and doctors from Baylor, Cincinnati Children's, Emory, Stanford, Michigan (go Blue!), and others who are studying Fragile X, and working with patients and their families. They collaborate on incredible, life-changing research and trials that are already making a positive difference on people living with Fragile X. They receive funding from the NIH to do this important work.

We witnessed transparency in action: hearing from four different research teams about the inroads they have been making in their fields. We learned about new drugs, new trials, and the efforts being made to educate OBGYNs about premutation carriers. We saw and heard about the incredible progress that has been made since researchers identified the FMR1 gene (the gene linked to Fragile X) in the 1990s. One doctor said he never would have dreamed the progress they have made in the last decade. Another said they were at an inflection point when it came to therapies/treatments. In those moments, I could see possibilities opening up for my son: a future that had at one time seemed impossible.

The Harshness of the Present

Eventually though, everyone had to confront the elephant on the Zoom. Each doctor explained in very clear detail what might be considered an “indirect cost,” and therefore at risk of being cut by this current administration. What quickly became apparent to me, an average person, is that indirect does not equate with “unnecessary.” Quite the opposite. One doctor said that “data storage” would be considered an indirect cost, and what use would research be, research that involves complicated genetic sequencing and mass amounts of data—if that information can't be stored? It's necessary. It's important.

Another doctor said, “I just don't know of any unqualified researchers doing bad science” in his field. They are smart, dedicated people working on already limited budgets. It may have been the same doctor who said that these proposed cuts could slash their project’s budget by a third. At that point, it wouldn't simply be a matter of hard choices, but would lead to systemic collapse. No one went further than this, about what it would mean for patients and families—but I think the implications are obvious. Progress would stop. People would suffer.

Make no mistake: if these cuts are made, we will ALL suffer.

NIH funding is crucial to the lives of my son and others like him, to people with genetic conditions, to people with cancer, to people with diseases that have not yet been named, or those who have conditions that are currently deemed “untreatable.” Cutting its funding is unconscionable, and I believe this is an issue that all of us can agree on. If any of you have lost loved ones to disease, or know someone struggling right now, the walks we do and the ribbons we wear are only a small part of what keeps this research going. Government funding allows for a sizable, predictable sum so that researchers can plan and execute their trials. It allows for collaboration, shared data, and transparency.

How to Help

So now that I have shaken you a bit, I want to ask for your help. The National Fragile X Foundation is a nonpartisan organization, and I have a nonpartisan plea for you: contact your representatives and tell them that the NIH matters, their work matters, and that these cuts are harmful and unnecessary.

Step One: Get the phone numbers for your Senators and Representative

One of the easiest ways to do this is through the 5 Calls app. This is the method I used. You put in your address and it tells you your House Rep and Senators, and it has their numbers. You just press the call button and it will connect you to each rep’s office in DC.

Bonus Points: Your Rep and Senators also have home offices in your state

These are not listed in the 5 Calls app (that I could see), but this information is easily searchable. I found mine and saved them to my Contacts. I will call those offices too, with the same message.

Step Two: Pick a Script

The most basic and effective script is this:

Hello my name is [NAME] and I live in [CITY/STATE/ZIP]. I am a constituent. I am urging the Senator/Representative to do [X] because [Y].

This works because the aides answering the phones and checking the voicemail will be gathering data as quickly as they can. They are going to note the content of what you say, and what you want your rep to do. They may just be recording it as a check in a column, and if enough people are calling about the same issue (in this case, NIH funding), it will reach the rep or senator, and let them know it's a topic their constituents are concerned about.

The 5 Calls app has scripts already programmed in. I checked, and they have one for NIH and NSF funding. It's pretty long, and would get cut off by a voicemail, but it can provide helpful talking points. It also has the added convenience of being on your phone while you call—a one-stop shop, so all you need is the app to make these calls during your lunch break, or whenever you have a free moment.

The National Fragile X Foundation also has a script on their website that you can use. Like the 5 Calls script, it is really long, and will get cut off by a voicemail message. But again, it is a great reference, and has excellent talking points.

Step 3: Just Call

Just do it. Don’t send an email—it will likely languish in an inbox and never get counted. A phone call takes effort, and the politicians know this, which is why they have aides tallying these calls.

If you are anxious or hate the phone: suck it up and do it. And if you’re really freaked out, you can call in the “off hours” when it’s likely you’ll get a voicemail instead. Leave a message with the pertinent information.

A Final Plea

Please, if you care about O— and our family, or if you have family members or loved ones who benefit from medical research: make the calls. This is especially important if you have Republican reps or senators. Let them know that regardless of party, people are concerned about cuts to NIH funding. I know reducing costs and balancing the budget is important to many people, but this just isn't the place to make cuts.

Less than a year ago, I sat in an office at Seattle Children's Hospital, and had a genetic counselor tell me that my son will likely never live independently. I can only protect him for as long as I am on this earth, and with each day that I have, I am going to fight for his future. These NIH-funded doctors and researchers are giving me hope right now: one, that there are new discoveries being made every day, which means my son may achieve more than we can imagine possible right now. And two, that there are amazing, brilliant, and dedicated people who are going to work each day to make the world better for people like my son.

Please be one of those people.