An awareness project in development

I Am HD

A puppet maker's idea, shaped by family experience and strengthened by voices from the Huntington's disease community.

Where the idea began

If HD were a puppet, what would it look like?

That question began with me, not in a meeting or a medical textbook, but through my own thoughts as a puppet maker.

I started wondering what Huntington's disease might look like if it could be turned into a character. How would it move? What might it sound like? What would it do?

I already had the beginnings of a visual idea: a face divided into two very different halves, part person and part something darker.

I then took those questions to Huntington's disease community pages and invited people to share their own thoughts. What surprised me was how many people pictured something remarkably similar.

The idea began with me, but the honesty and lived experience of the community helped confirm it, challenge it and shape what came next.

What would HD look like?

I imagined two sides within one face: something recognisably human joined to something darker and changed.

How might it move?

That became part of the conversation with the community: stiffness, involuntary movement, unpredictability and the feeling of control being taken away.

What might it sound like?

Not simply a frightening voice, but one capable of expressing how HD affects movement, thinking, emotions, relationships and entire families.

Important: the character represents Huntington's disease itself, not the person living with it.

Shaped by the HD community

I had the idea. Then I asked the community.

I already had the beginnings of the character in my mind: a face divided into two very different halves.

I shared my questions across Huntington's disease community pages. I asked people what HD might look like as a puppet, how it might move and what it might sound like.

The response was overwhelming. People described shadows, monsters, dark clouds, stiffness, involuntary movement and something that slowly takes control.

What struck me most was how many people were seeing something close to the same image I already had. Again and again, people mentioned two sides: the person and something darker.

The community did not create the original idea, but their honesty and lived experience helped give the character greater meaning.

Tap the comments These are anonymised extracts and careful summaries of responses shared by people affected by HD.

HDCommunity voiceFamily member "It would look like a shadow, hidden and different for each person."

Sometimes the shadow is barely noticed. At other times it seems to cover everything.

HDCommunity voiceCarer "HD is a thief of time, joy and the person that once was."

Even on a good day, it can feel as though it is waiting in the shadows.

HDCommunity voiceFamily member "Maybe a double-sided puppet? The before and after?"

Several people imagined two faces or two sides showing how symptoms can change a life.

HDCommunity voiceCarer "Stiff, jerky, almost like a wooden puppet or marionette."

People mentioned stiffness, involuntary movements and the feeling that control is being taken away.

HDCommunity voiceFamily member "A dark cloud that becomes darker as the disease progresses."

Another suggestion was a voice beginning as a grumble and becoming increasingly thunderous.

HDCommunity voiceHD family "The HD monster is not them. It is the disease."

This distinction became one of the most important principles behind the character.

HDCommunity voiceFamily member "I think of black, but I remind myself it is not all darkness."

Alongside fear and loss, people also spoke about strength, love and continuing to live.

HDCommunity voiceCarer "A warrior who loses some powers, but gives strength to those around them."

Not every response was about a monster. Love and resilience were part of the picture too.

The puppet represents HD, not the person living with it.

The darker descriptions belong to the disease and the changes it can cause. The person affected is never the monster. Behind HD remains a person who deserves to be seen, understood and loved.

From sketch to concept

Watching I Am HD take shape

The physical puppet has not yet been built, but the character has already travelled from a question in my mind to sketches and a detailed visual concept. Tap each stage to explore it.

The first light pencil sketch of the I Am HD character

1

The first sketch The earliest attempt to put the half-and-half idea onto paper.

The starting point: one recognisably human side and one darker side, joined down the centre by visible stitching.

A darker developed pencil sketch of the I Am HD character

2

Developing the character The contrast became stronger and the darker half more unsettling.

Adding meaning: texture, shadows, damaged surfaces and an uneven appearance began expressing some of the community's descriptions.

The realistic I Am HD character concept sitting beneath a lamp

3

The visual concept A clearer picture of how the finished character might feel on screen.

Still not the finished puppet: this image guides the mood, materials and personality. The real build will develop further as foam, fleece, hair, eyes and movement bring it to life.

Why does the character have two sides?

The recognisably human side

This keeps the character connected to the person, personality and life that must never be forgotten behind Huntington's disease.

The darker stitched side

This represents HD itself and the physical, emotional and cognitive changes it can bring. It does not represent the worth or identity of the person living with it.

Watch the film

Meet I Am HD

The physical puppet has not yet been built, but the idea already has a voice.

This short film introduces I Am HD and gives the character a chance to express the physical, emotional and family impact of Huntington's disease.

It is not intended to speak for every person or every family. It is an awareness film shaped by personal experience, creative ideas and the voices shared by the HD community.

Please remember: I Am HD represents the disease itself, not the person living with it.

Watch directly on YouTube

Press play to meet the character.
The video opens here without leaving the page. I AM HD

Follow the build

Building I Am HD

The character exists in sketches and concept images, but the physical puppet is still waiting to be made. This section will follow that journey from the first design to its first movement.

Current stage: concept and design Stage 1 of 5

The progress tracker will be updated as the real puppet build begins.

1 Concept and sketches Current stage

The original question, community responses, early sketches and visual concept have established the character's direction.

2 Choosing the materials Planned

Foam, fleece, eyes, hair, clothing and textures will be chosen to translate the concept into a practical working puppet.

3 Building the puppet Planned

The head, mouth, hands and body will be sculpted and assembled, with the two contrasting sides developed carefully.

4 First movement test Planned

The finished mechanisms will be tested to discover how the character moves, looks towards the camera and begins to communicate.

5 The completed puppet Future goal

The completed I Am HD puppet will be ready for its first photographs, films and whatever awareness opportunities follow.

This section will grow with the puppet.

Future photographs, short videos and build notes can be added here as each stage is reached.

Looking ahead

What might happen next?

I Am HD is still developing. The physical puppet has not yet been built and its future has not been decided, but the character has already opened conversations and created new possibilities.

FILM More films and stories New scripts could explore experiences that are often difficult to explain in words alone.

Future films might focus on family life, caring, changes in movement or behaviour, the fear of testing, or simply what it feels like when HD enters a home.

TALK Awareness conversations The character could help begin respectful discussions with communities and adult audiences.

Nothing has been decided, but the puppet may eventually support talks, awareness events, interviews or other projects where a strong visual character can help people notice HD.

IDEA Different puppet ideas I Am HD does not have to be the only character created for Huntington's awareness.

Another idea may need a gentler, funnier or completely different puppet. The design should always fit the audience and the story being told.

An encouraging conversation

The I Am HD concept has received an encouraging response from Vicki Rutland at the Huntington's Disease Association.

We have discussed some possible ways puppetry might support future awareness and engagement. We hope there may be opportunities to work together as the idea develops.

No formal partnership or project has been agreed

The future remains open. This page records the journey honestly: what has happened, what is being explored and what is still only an idea.

Help shape what comes next

Have an idea?

I Am HD is still developing, and the community can remain part of its journey. If this page has sparked an idea, I would genuinely like to hear it.

STORY An experience or story Is there something about living with or alongside HD that deserves to be explored?

You might suggest a family experience, a difficult conversation, a misunderstood symptom or a moment that helped you feel less alone.

SCRIPT A script or film idea Perhaps you can imagine a short scene featuring the character shown on this page.

Your idea does not need to be professionally written. A sentence, a situation or a few lines of dialogue may be enough to begin.

NEW A different puppet Maybe another audience or another subject needs a completely different character.

A different puppet could be gentler, brighter, funnier or designed for a particular age group. The character should always suit the story and the people it is intended to reach.

Your idea does not need to be fully formed.

Whether you live with HD, care for somebody, have Huntington's in your family or simply have a creative thought, please feel free to get in touch. Your suggestion could help shape what happens next.

Share your idea

Messages are read before anything is shared publicly. Sending an idea does not guarantee that it will be used.

I Am HD began with one puppet maker's question. Its next chapter may begin with an idea from somebody reading this page.