VALDÍS

Some watches tell time.

This one tells a story.

A story about a girl named Sunna.
A story about rare disease.
A story about families who refuse to give up hope.

When Sunna was diagnosed with AHC, our world changed forever.

AHC is one of the world’s rarest neurological diseases. Families living with it face uncertainty every single day, paralysis episodes, seizures, exhaustion, fear, and a future filled with unanswered questions.

Like many rare diseases, AHC receives far too little attention and far too little research funding.

But we refused to accept silence.

What began as a fight for our daughter became a mission far bigger than ourselves.

Over the years, we helped build awareness across Iceland and internationally. We connected families, organized conferences, supported research, and worked to make sure children living with AHC would never feel invisible again.

Now we take the next step.

Our goal is to raise 30 million ISK for research.

Not someday.
Now.

Because research creates understanding.
Understanding creates treatment.
And treatment creates hope.

The Valdís watch was created to help make that happen.

This is not just a watch.
It is a symbol of time, hope, resilience, and action.

Every watch purchased helps move research forward.
Every watch helps carry Sunna’s story into the world.
Every watch becomes part of something bigger.

For families living with rare disease, time matters.

And together, we can turn time into hope.

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The Valdís watch is a timeless piece created with purpose.

Designed in Iceland and inspired by strength, the watch combines classic watchmaking with a mission to support scientific research into Alternating Hemiplegia of Childhood (AHC).

Elegant, understated, and meaningful — Every detail reflects the story behind the watch.

Valdís – 1 in a Million Edition

Time for a Cure

Only 365 watches exist

Time Designed With Meaning

The name Valdís carries deep Nordic heritage.

Formed from the Old Norse elements “Val” meaning excellence, the chosen, distinction, power. “dís” meaning guardian spirit.
Valdís represents strength, protection, and honor.

Traditionally understood as a guardian spirit of the fallen, the name reflects resilience and quiet courage.

This watch embodies that spirit.

A Watch With Purpose

Sigurður Hólmar Jóhannesson
Creator of the Valdís Watch

Sigurður is a long-time watch collector and advocate for rare disease research. After his daughter Sunna Valdís was diagnosed with Alternating Hemiplegia of Childhood, he began working internationally to raise awareness and support research.

The Valdís Watch was created to combine his passion for watches with a deeper purpose, helping move science closer to a cure.

Valdís is more than a timepiece.

It is a tribute to those living with Alternating Hemiplegia of Childhood (AHC). One of the world’s rarest neurological disorders.

Each watch stands as a symbol of:

• Strength in adversity
• The power of the chosen few
• Honor for rare warriors
• Every second that matters

Only 365 individually numbered pieces will ever be made, a reminder that every day counts.

Design & Details

Case

• 39mm 316L stainless steel
• Brushed case with polished bezel
• Fluted crown with engraved “V”
• Solid case back, laser engraved
• Water resistant to 5 ATM (50 meters)

Dial

• Pure White
• Black Roman numerals
• “Valdís” in Snell Roundhand
• Lavender hands (the color of AHC) 
• “AHC” in Snell Roundhand above 6 o’clock

Movement

• Miyota 2035 Japanese Quartz
• Reliable, precise, and durable

Crystal

• Scratch-resistant sapphire crystal

Crown 

• V for Valdís on the centre crown

Strap

• Genuine brown leather
• Double-press butterfly deployant clasp

Box

• Dark brown outer box
• Light brown inner box 

Certificate

• Certificate comes in a leather pouch

 

Case Back Engraving

Arched at top:
“1 in a million”

Center:
Valdís

Bottom:
XXX/365

Each piece is individually numbered.

100% for Research

All proceeds from VALDÍS go directly to scientific research for AHC, with no administrative overhead.

Every watch funds real science.
Real progress.
Real hope.

VALDÍS

A guardian spirit. A symbol of strength. A legacy in time.

 

VALDÍS — FAQ

What is Valdís?

Valdís is a purpose-driven watch project created to help raise funds for research into AHC (Alternating Hemiplegia of Childhood), one of the world’s rarest neurological diseases.

The project was inspired by Sunna Valdís and her family’s journey living with AHC.

What is AHC?

AHC (Alternating Hemiplegia of Childhood) is an ultra-rare neurological disorder that can cause episodes of paralysis, seizures, developmental challenges, exhaustion, and other serious symptoms. AHC is caused by a mutation in ATP1A3.

Because the disease is so rare, research funding and awareness remain very limited worldwide.

Why was the Valdís watch created?

The Valdís watch was created to turn awareness into action.

Our goal is to raise 30 million ISK for research that can help improve understanding, treatment possibilities, and hope for families living with AHC.

Where does the money go?

Funds raised through the Valdís project support research efforts connected to AHC and rare neurological diseases.

The project is committed to transparency regarding fundraising goals, research partnerships, and allocation of funds.

How much of the purchase supports research?

A portion of every Valdís watch sold goes directly toward the research fundraising goal.

Further details about contributions and funding milestones will be shared publicly.

Who is behind the project?

AHC Association of Iceland was formed in 2009 and is behind the project.

The project was founded by Sigurður Hólmar Jóhannesson and family, who have worked internationally for more than a decade to support awareness, advocacy, collaboration, and research connected to AHC.

Their work has included conferences, documentaries, international partnerships, and support initiatives for families affected by rare diseases.

Is Valdís a charity?

Valdís is a fundraising initiative and awareness project built around a meaningful product and a larger mission run by AHC Association of Iceland which is a registered charity in Iceland.

Why the name Valdís?

The project carries Sunna Valdís’s name and story at its heart.

The watch symbolizes time, resilience, hope, and the belief that together we can help move research forward.

Why a watch?

For families living with rare diseases, time matters.

The watch serves as a daily reminder that every moment, every conversation, and every contribution can help create progress.

How can I support the mission?

You can support the mission by:

• Purchasing a Valdís watch
• Sharing the story
• Supporting awareness
• Becoming a partner or sponsor
• Helping spread hope for rare disease families

Can companies participate?

Yes.

Companies and organizations can support the mission through partnerships, sponsorships, employee gifting programs, awareness campaigns, or larger fundraising collaborations.

How can I follow the project?

Updates, campaign news, fundraising progress, and future announcements will be shared through official AHC Iceland channels and media platforms.