A special hat to support Ataxia research

I had never heard of Ataxia until my brother Riccardo got sick. He was in the prime of his life, 44 years old, strong and healthy. He loves the outdoors; he used to spend entire weekends in the mountains in Sicily looking for special places to feel connected with nature. Quite a different experience from his current reality: being confined at home, struggling with a body that he can’t fully control.

The symptoms started gradually. First some episodes of double vision, then the odd moment where he felt a bit wobbly. It took nearly a year before we had a diagnosis.

Me and my brother Riccardo in London for Christmas 2015. His symptoms started a few months later in 2016.

Ataxia is not really an illness in itself, it’s more like a symptom that something else is attacking the brain. It manifests itself with double vision, wobbly gait and slurred speech. Imagine being really drunk, only that you are fully sober.

The cause of Ataxia can be either genetic (of which there are hundreds of variants) or caused by external factors. In my brother’s case his Ataxia was the result of Hodgkin’s lymphoma affecting his cerebellum, a condition that medical professionals call paraneoplastic syndrome.

We are lucky that Riccardo defeated the lymphoma through chemotherapy, but sadly he hasn’t been able to fully recover his eyesight or balance. His speech is much better and we are now able to have a 5 minute conversation on the phone, even though it is really tiring for him. He needs to do physiotherapy daily to make sure that his body doesn’t deteriorate further and that he can keep some form of independence for as long as possible.

Ataxia doesn’t have a cure (yet) but there are some wonderful organisations, such as Ataxia UK that provide a strong network for scientific research as well as patient support groups.

I have been looking for ways to raise money for them, so I teamed up with a talented friend to create a very special hat. Kellye Coffyn, founder of Long Time Gone, has embroidered one of my Milan hats. I first blocked the shape of the hat by hand using gorgeous velour felt, and trimmed with matching burgundy petersham ribbon. Kellye then used a special vintage embroidery machine for hats to achieve this stunning result. She turned it into an even more luxurious piece with gorgeous gold metallic roses embroidered all along the brim. We have called it “Wine & Roses”, it has a classic fedora shape and would suit any gender.

The finished hat perched on the vintage embroidery machine used to stitch it.

Not to boast or anything, but if you were to order a bespoke hat like this one it would probably cost around £500. We are proud to be giving it away in a raffle to raise funds for Ataxia research!

  • Entry is £1 per ticket
  • You may enter as many times as you like!
  • Open internationally
  • The raffle closes at 2pm GMT on Friday, the 5th of February
  • The winner will receive the hat in time for Valentine’s Day, what a great gift that would be!
  • Hat size: medium, 57 cm (22.5 inches)
  • All proceeds will go to Ataxia UK.

Regardless of how much we will collect for Ataxia research, this raffle will raise awareness of this rare disease and the many unsung heroes who struggle with it every day. Kellye and I strongly believe in scientific research so we hope that one day there will be more options available to cure or at least manage Ataxia. Thank you so much for taking a moment to read this post, it does mean a lot to us.

About Ataxia UK

Ataxia disrupts the communication between the cerebellum and our muscles. It disrupts someone’s ability to control their body, to communicate, and to have agency over their lives. We are Ataxia UK. We disrupt that disruption. We fund medical research into finding a cure for the condition, and until we do, support anyone affected by ataxia. For more information on Ataxia visit https://www.ataxia.org.uk/

About Long Time Gone

LongTimeGone creates beautiful, custom embroidery using vintage chainstitch machines and techniques.

Beginning with hand-embroidered Western wear in 2017, owner, designer and stitcher Kellye Coffyn brought the styles of her native Texas to the UK, inspired by country music culture, the embroidered suits worn by performers like Dolly Parton and Hank Williams and the beautiful natural surroundings of her adopted home of Yorkshire. For more information visit: https://www.longtimeg.one/

About Cheeky Hats

I make bold and playful hats for all genders. My motivation to create bespoke hats comes from the special moments I have with my customers: a lady looking back at herself in the mirror with twinkling eyes, or someone telling me that her hat made her feel ‘cheeky’. So here is Cheeky Hats: unique handmade pieces that are bold in design, and a little irreverent. Read about how I make my hats here: https://cheekyhats.wordpress.com/step-into-my-studio/

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