A Brighton doctor is officially launching a medical research charity today (Tuesday 3 March) after his life was changed when his infant daughter had a rare genetic condition with no known cure diagnosed
The charity is called Rare People – The Research Charity and has been set up by Rob Galloway, a consultant in A&E (accident and emergency) at the Royal Sussex County Hospital, in Brighton.
Professor Galloway also teaches at the Brighton and Sussex Medical School and is the father of Frankie, who is nearly two years old.
He said: “Rare People was founded after our daughter Frankie was diagnosed with DeSanto-Shinawi (DESSH), an ultra-rare neurodevelopmental condition affecting around 200 people worldwide.
“It causes developmental delay, speech and swallowing difficulties, problems with co-ordination and balance and intellectual disability – meaning she will need lifelong support from us.
“We were told there were no medical treatments. Then researchers used artificial intelligence (AI) to identify a licensed, repurposed drug that might help. Early use showed promise.
“So we created Rare People to fund rigorous clinical trials that would otherwise never happen.
“Every penny raised goes directly to research – as all charity costs are covered personally by the founders and trustees.”
Professor Galloway said: “I have spent my entire career in emergency medicine where I know how to treat my patients … But with Frankie, my daughther and the most precious patient I’ve ever felt responsible for, I didn;t have a clue what to do.”
Few people who know Rob Galloway would be surprised that he refused to accept that nothing could be done – and he did a lot of work researching the condition and tracking down experts before starting Rare People.
The charity – already registered with the Charity Commission – does not plan to focus on just the one rare condition but has chosen to start with research into DeSanto-Shinawi syndrome.
The charity hosted a fundraising event at Rockwater, on Hove seafront, on Sunday night and the event included talks from key research scientists and others with first-hand experience of caring for children with the condition..
The speakers also included Brighton and Hove Albion owner Tony Bloom and head coach Fabian Hürzeler, fresh from the 2-1 win over Nottingham Forest.
Some of the players were present including Danny Welbeck, Jan Paul van Hecke and Jack Hinshelwood. They already know what Hürzeler’s team talks are like.
But their German boss was a revelation for the crowd, moving some people to tears with his rallying call for support for the charity.
Professor Galloway is Brighton and Hove Albion’s the senior medical adviser on match days at the Amex Stadium.
Hürzeler stood alongside him and told the launch party that, as a coach, he spent a lot of time working on marginal gains for the team.
He said: “Small improvements make a big difference. For these children, a small breakthrough could be walking, communicating, living more independently.
“That is not marginal. That is life-changing.”
Professor Galloway said: “Rare should not mean ignored. This event is about turning helplessness into hope for countless families of children suffering from these rare diseases.”
The event raised tens of thousands of pounds and is just the start, with Professor Galloway adding: “Rare People was born in Brighton. But we hope this is the beginning of something much bigger.”
To donate, click here. For more information about the charity, click here.
To read Rob Galloway’s personal story written for the launch of the charity and published by the Daily Mail today, click here.
Frank: I have the greatest admiration for Professor Galloway, and hope his new charity does well. Two minor points, though: DHSC has just reissued its strategy for very rare diseases. Streeting seems to want get his retaliation in first. Second, calling for more research is too often not accompanied with requests for bids on very specific aspects of a medical problem . These slight reservations aside, best wishes. John
Interesting.