Tom is in a race against time.

ALS is taking away his independence and physical strength.

But there is still a window of hope.

A medication called Tofersen can slow the progression of his disease.

But where we live, he cannot access it.

Our closest option to treatment is Germany, where the medication is approved. But as an international patient, we must cover all costs ourselves.

The Swedish newspaper Aftonbladet recently featured Tom in an article about how patients are being forced to seek treatment abroad: Tofersen Article

How You Can Help

ALS moves quickly, and time is something we cannot get back.

We are raising $380,000 (3.5 million SEK) to secure one year of Tofersen in Germany — giving Tom the chance to start treatment while there is still time.

These funds will help cover:

• One year of Tofersen injections

• Monthly travel between Sweden and Germany

• Essential support during treatment overseas

The love of my life

My name is Tamara, and I am an American-Swede living in Stockholm together with my husband Tom.

For over three decades, our love has carried us across countries and distances, shaping a life together across two continents.

With each year, our bond has only deepened and grown stronger.

Tom is the love of my life — my forever person, my partner in everything.

But today, I am not only his wife.

I am his full-time caregiver — and an advocate in the fight against ALS.

This is Tom

Tom has always been a person you can count on. As a mechanical engineer, he has spent his life solving complex problems and keeping critical systems running. The same mindset defines him outside of work — when something breaks, Tom is the one who steps in with a calm, focused manner and makes things work again.

Tom has always had a soft spot for animals, and our Bengal cat Lakrits (Liquorice) has become far more than a pet during this journey. She seems to sense exactly when Tom needs her and rarely leaves his side. In many ways, she has become one of the emotional anchors helping us get through each day.

A Groundbreaking Clinical Trial in San Francisco

With no treatment options available in Sweden, Tom chose to take part in an experimental clinical trial in the United States.

In August 2024, we traveled to the Forbes Norris ALS Center in San Francisco, where Tom became one of the first patients in the world to receive a new gene therapy developed by UniQure.

This was a first-in-human study focused solely on safety and research.

While we did not see a clear clinical benefit for him, it was still a meaningful step — both for us and an opportunity for Tom to contribute to the future of medicine.

He chose to participate despite the uncertainty and risks — not only for himself, but to help move ALS research forward for those who come after him.

The ongoing fight

Living with ALS is not only physically and emotionally overwhelming — it is financially draining.

Since Tom’s diagnosis, I have stepped away from my career to care for him full-time. We have covered costs for equipment, care, travel, and medical needs ourselves.

During the clinical trial year in San Francisco, we received a stipend for living expenses through the study, but still relied significantly on our personal savings.

Today, as Tom’s primary caregiver, I manage all aspects of his care — treatments, logistics, and daily life

But this is something we cannot carry alone.

We are facing a complex and urgent path—navigating system gaps, borders, regulations, and limited time—while doing everything we can to move forward.

To make this possible, we are asking for your support.

Any contribution—no matter the size—will help bring Tom closer to treatment overseas. Because no one’s chance at treatment should depend on geography.

If you’re unable to donate, sharing Tom’s story and keeping him in your thoughts means just as much.

From the bottom of our hearts, thank you for standing with us.

With love and gratitude,

Tamara & Tom