A Thousand Wings: An Evening with Cure EB's Silver Butterfly Dinner 2026

Quinze Ans de Grâce

Some evenings stay with you. Not because of the champagne — though the champagne was excellent — and not because of the company, though the company was as distinguished as any room in London. This evening stayed because of one young woman who stood up, sang like an angel, and reminded two hundred of the city's finest that there are more important things in this world than being important.

The Silver Butterfly Dinner marked its 15th anniversary on the 14th of May at One Marylebone, the magnificent converted neoclassical church that somehow manages to be both thunderously grand and intimately warm. Cure EB's annual fundraiser brought together champagne, fine food, entertainment and auctions under one soaring roof, in service of a cause that demands every penny it can raise. The room didn't need asking twice.

What is EB? The Condition That Changes Everything

For the uninitiated — and one rather hopes the uninitiated remain so, having never suffered it — Epidermolysis Bullosa is one of those conditions that is almost impossible to describe without making your listener wince. It is an incurable, progressive, debilitating and very painful genetic skin condition which causes internal and external blisters at the slightest friction. In its most serious form, it causes wounds like very severe burns, eventually leading to skin cancer.

Children with the condition are sometimes called "butterfly children," as their skin is said to be as fragile as a butterfly's wings. The blisters occur wherever friction does: at the joints, in the throat, in the mouth. Getting dressed takes up to two hours. Eating causes blisters. Every morning, Sharmila Collins — mother, founder, extraordinary human being — wakes her daughter Sohana and bursts her blisters with a needle, one by one, to make the day bearable. Not the alarm clock any of us would choose. Not the morning any child should know. And she does it, every single day, with love.

There are approximately 8,000 people living with EB in the United Kingdom. Government funding, as is so often the case with rare conditions, is scant. Which is precisely why evenings like this one matter.

Sharmila, James and Sohana Collins: Tout Simplement Extraordinaires

The soul of Cure EB is, without question, the Collins family. Sharmila and James founded the charity — originally called the Sohana Research Fund — after their daughter Sohana was diagnosed with recessive dystrophic EB. What began as one family's response to an impossible situation has grown, over fifteen years, into a research engine that is changing the scientific understanding of genetic skin disease worldwide.

What strikes anyone who has spent time in their orbit is this: not a penny of donations is absorbed by administration. Every pound raised goes directly to research. Sharmila and James take nothing from the charity. They give it everything instead — their time, their energy, their social intelligence, their extraordinary capacity to bring brilliant and generous people into a room and make them feel glad to be there. C'est un don rare.

Sohana herself sang at the dinner, with a presence and grace that silenced the room. Eloquent, cheerful, brave and clever, she has a quality that many people spend a lifetime failing to acquire: the ability to be wholly herself, without apology or performance. She is extraordinary company. The whole family is.

Damian Lewis: The Host in the White Suit

Damian Lewis has been a patron of Cure EB since 2014, and it shows — not in the dutiful, press-release sense, but in the way he inhabits an evening like this. He arrived in a fabulous white suit, hosted with effortless wit and warmth, and gave a speech that managed to be both funny and genuinely moving. Damian has the rare gift of making a large room feel like a dinner party among friends. He is the kind of patron a charity dreams of: not merely a famous face, but a committed and graceful presence who understands exactly what he is there to do, and does it brilliantly.

Dominic Holland: Father of Spider-Man, Master of Ceremonies

Compering the auction was Dominic Holland — stand-up comedian, Perrier Best Newcomer Award winner, and, as he is now inescapably known, father of Tom Holland, the actor who plays Spider-Man. Dominic won the 1993 Perrier Best Newcomer Award in Edinburgh, and has spent the decades since honing a brand of self-deprecating, warmly observational comedy that was perfectly suited to the evening's register. He was brilliant — sharp, generous with the room, and entirely unfazed by the fact that the biggest laughs of his career arguably now wear a red and blue superhero suit.

Mike Epstein, the MC, was equally wry and witty throughout — noting, with perfectly calibrated timing, that he was grateful his parents had not named him Jeffrey. A man who clearly understands that the best way to open a wallet is to make its owner laugh first.

The Science: Hope on the Horizon

After dinner, Professor John McGrath, Professor of Molecular Dermatology at King's College London and Honorary Consultant Dermatologist at the St John's Institute of Dermatology at Guy's and St Thomas' NHS Foundation Trust, rose to give a speech that was, by turns, funny and quietly profound. He walked the room through the state of EB research with the clarity of someone who has dedicated his professional life to it — which he has, for more than twenty-five years.

The results are genuinely exciting. Professor McGrath and Professor Katsuto Tamai of Osaka University have identified which cells in the bone marrow are important in repairing wounds in skin, and have pinpointed the signalling mechanism that directs those cells to wounded areas — a landmark step towards understanding how the body might be persuaded to heal itself. Clinical trials using bone marrow transplants are underway, and the early results offer real hope not only for EB sufferers but for the broader understanding of genetic skin disease.

Separately, there is regulatory momentum too. The MHRA has approved B-Vec (Vyjuvek), developed by Krystal Biotech Inc. — a topical gene therapy gel that can be applied directly to EB wounds — for use in patients from birth onwards. The next step is NICE approval, which is currently under review. For a condition with so little in the way of precedent, the pace of progress is, finally, beginning to feel commensurate with the need.

The research is expensive. The government funds very little of it. The evening's auction proceeds — which exceeded estimated lot values by multiples of ten, the crowd bidding with cheerful abandon — will help keep it moving.

The Auction: A Battle for the Ages

Dominic Holland stepped up as auctioneer to coax a little more cash from the diners and found, on this particular evening, that coaxing was not required. The room was there to give, and give it did.

The most fiercely contested lot of the night was, rather perfectly, a dinner cooked by Sharmila and James Collins themselves, at their home with Sohana. Two people at our table — a husband and wife, David and Laura Lomer — wanted it with a competitive intensity that I have rarely witnessed outside of a property auction in Kensington. They bid against one another. They bid against the couple at the next table. They bid, frankly, against common sense. Eventually, the auctioneer — a man of considerable poise, but clearly not trained for domestic arbitration — settled the matter by proposing they share. They did. It was, as the French would say, un arrangement très civilisé. It raised the largest sum of the evening, which tells you everything about what this family means to the people in that room.

A Room Worth Being In

Sharmila and James have a gift for curation that no algorithm could replicate: bankers, media personalities, top lawyers and captains of industry, all of the genuinely good sort. The legendary investor Jan from Valiance was there with his team, and the room around him was, characteristically, worth every seat. Among the supporters whose generosity underpins the research year-round: Goldman Sachs Gives, Bain Capital Community Partnership, ICG, Redburn, Garfield Weston Foundation, The James & Deirdre Dyson Trust, The Wolfson Charitable Fund, Rosetrees Trust, The Tudor Foundation, Morgan Lewis, Brothers Trust, Debra International, Gene People and EB MRF — a roll call that speaks for itself. Photographer Debbie Clarke, well known to many in the room, moved through the evening with her usual warmth and bubbly energy, capturing it all for posterity. My son Joseph, it must be said, looked tremendously sharp in his tightly cut blue suit. I am a biased observer, but I am also correct.

Les Généreux: A Thank You

An evening like this runs on generosity, and the generosity on display was exceptional. Particular thanks are due to Maserati, who donated a week with the magnificent GranCabrio Trofeo — a gesture that delighted the room and raised serious money — and to DS Automobiles, who contributed a DS N°8 Étoile Long Range for the occasion. Among the live auction highlights: a lunch with Jason Isaacs at The Ritz, which any right-minded person would bid on without hesitation; a stunning South of France escape that had the room dreaming of rosé and sunlight; and, perhaps the most coveted lot of the evening, an encounter with Gillian Anderson in her acclaimed role as Virginia Woolf — culture, glamour and intellectual firepower in a single irresistible package. Not to mention a signed Spider-Man poster and a private screening with the star of the film himself — an offer that reduced several otherwise composed adults to the barely concealed excitement of twelve-year-olds.

Une Dernière Pensée

I have been attending these evenings for over a decade now, and they do not diminish. If anything, they grow more meaningful as the science accelerates and the hope becomes more tangible. The Silver Butterfly Dinner is a demonstration of what a small group of extraordinary people — Sharmila, James and Sohana at the centre of it — can build through sheer force of conviction, intelligence and love.

The butterflies will fly again soon. I rather hope to be there.

To donate or learn more about Cure EB, visit cure-eb.org.

You can see more about Cure EB and donate here: https://cure-eb.org/support-us/donate/

With huge thanks to their friends and supporters:

Alta Advisers Ltd, Arle, Artemis Charitable Foundation, Bain Capital Community Partnership, BGC Charity Day, The Big Give, Brothers Trust, California Community Foundation, Candis, The Childwick Trust, Cure EB Foundation, Debra Sweden, DJF Solicitors, Exotix Partners, Garfield Weston Foundation, The George Oliver Foundation, GFI, Goldman Sachs Gives, HC, ICG, The I.G.Y. Foundation, The Independent, The James & Deirdre Dyson Trust, Jnane Tamsna, Mariamarina Foundation, The Maurice Hatter Foundation, Medicor Foundation Liechtenstein, Morgan Lewis, The Phoebe Research Fund, The Popli Khalatbari Charitable Foundation, The Radio 4 Appeal Fund, Redburn, Reed Foundation, Ren Clean Skincare, The Roan Charitable Trust, Rosetrees Trust, Share Gift, Spears-Stutz Charitable Trust, Stichting Hartwig Foundation, The Tides Foundation, The Tudor Foundation, The Wolfson Charitable Fund, Gene People, Debra International, and EB MRF