Neal Durge

Emergency and prehospital doc. Devoted Dad. Occasional mountain climber. Die hard BRFC fan. Opinions own.

[Rob Galloway @DrRobgalloway]

Please share

As some of you may know, a few months ago our daughter Frankie was diagnosed with an incredibly rare genetic condition called DeSanto-Shinawi Syndrome (DESSH). Only about 250 people in the world have it. It causes developmental delay, speech and swallowing difficulties, problems with coordination and balance, and intellectual disability — meaning she will need lifelong support from us.

About a month after Frankie’s diagnosis, an extraordinary piece of research came out from the Mayo Clinic in the USA. Using artificial intelligence, researchers analysed over 30,000 already-licensed drugs to see if any could upregulate the remaining healthy copy of the damaged WAC gene — the gene affected in DESSH.

Remarkably, the AI program identified a drug that seemed to work in lab studies, and it was then tried in one child with the same condition. The early six-month data released recently is incredibly promising — showing measurable increases in WAC protein and meaningful developmental progress.

As a family, we wanted something positive to come from what has been a very difficult time. We’ve therefore set up a charity — Rare People – The Research Charity — to fund research into rare neurodevelopmental conditions like Frankie’s.

The first goal is to help fund a clinical trial here in the UK to see if the same benefits seen at Mayo can be replicated in other children, and then to expand this approach to other rare genetic conditions.

Most families with these conditions are told there’s no treatment — nothing that can be done except love and support. The aim of our charity is to change that: to show that there may be medical interventions which, through AI and repurposed drugs, could directly improve quality of life for these children and their families.

The charity is now fully registered with the Charity Commission and has HMRC Gift Aid and JustGiving in place. You can find out more about Frankie’s condition, the research, and our plans at:
https://t.co/D8dm55PMED

If you’d like to set up a sponsored event, please go to:
https://t.co/rxnZ0lg9V8

If you’d prefer to make a direct donation, please visit:
https://t.co/obDFC4RVNh

Thank you so much for your support — it means the world to us, and to families like ours.
Rob

[Journal of Trauma and Acute Care Surgery @JTraumAcuteSurg]

A novel hemostatic agent of silica-based polymer was found to be effective in treating arterial injury in a swine model under coagulopathic conditions and demonstrates vessel patency when compared to the gold standard Quick Clot Combat Gauze+

https://t.co/XXbh3eD6Bd

[London Ambulance Service @Ldn_Ambulance]

With warm weather and a 'Very High' pollen count forecast in London today and over the weekend, please take extra steps to stay well 🔽

✅ Take your preventer / hayfever medication and carry your inhaler if you use them

✅ Stay hydrated

✅ Follow @NHSuk guidance for more info

[Melinda (Dolly) Mcpherson @MelindaDollyMcp]

Do you have knowledge/experience in out of hospital cardiac arrest and Bystander CPR? I am looking for ‘experts’, ‘specialists’ and ‘informed individuals’ to contribute to a Delphi study to establish criteria of quality for bystander CPR in OHCA. Registration link in thread.

[Mamoun @drmamoun01]

And the team are 🟢 to go and what a team - So many to thank but above all, thank you @LDNairamb for making this happen!
#ECAT #ECPR #ECMO #Resuscitation
#CriticalCare #LAA #HEMS

[SECAmb CCP @SECAmb_CCP]

Applications are still open for trainee Critical Care Paramedics. If your an experienced paramedic interested in the best job in the ambulance service (might be biased) then apply here - https://t.co/CtFhLRm1r7

[Journal of Trauma and Acute Care Surgery @JTraumAcuteSurg]

🔥The 24 Hottest Articles of 2024🔥

"Reverse Shock Index Multiplied by the Motor Component of the Glasgow Coma Scale Predicts Mortality and Need for Intervention in Pediatric Trauma Patients"

@TannerSmida @JBardesMD @DrBobJAX

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[David Welch @DavidWelchCEO]

Tomorrow on @BBCRadio4 at 8pm `Ambulance` follows @Kevin_Fong and colleagues from @airambulancekss to the frontline of saving lives.

It's a unique chance to hear how we bring the hospital to the patient when every second counts and give patients the best chance of survival.

[Adam Grant @AdamMGrant]

Abusive bosses don't drive performance. They undermine it.

471 studies, 149k people, 36 countries: in aggressive workplaces, we do poorer work, collaborate less, and shirk more. Incivility breaks confidence and breeds resentment.

The best way to get results is to show respect.

[Air Ambulance Charity Kent Surrey Sussex @airambulancekss]

To our dispatchers Carol, Ed, Harvey, Lauren, Lottie, Nathan, Skyler, Sophie, & Tabitha

Thank you for tireless work behind the scenes, making sure the people of Kent, Surrey, & Sussex get the critical care they desperately need

Your crucial work makes a lifesaving difference❤️

[London Ambulance Service @Ldn_Ambulance]

Abuse is #NotPartOfTheJob ❌

Watch the shocking moment in @BBC #Ambulance EP1 where a panic alarm blares out on open radio channel. A #TeamLAS crew has been assaulted while treating a patient.

Last year our staff reported 2,159 cases of verbal and physical abuse.

[Air Ambulance Charity Kent Surrey Sussex @airambulancekss]

Only one week to go until Heli Hike at Night!🌙

That means there's not much time left to sign up and join us for this fun and beautiful nighttime walk.

Don't delay, become a Heli Hike at Night hero today! Sign up at https://t.co/sYnE3t7V04

[Dan Keane @DanPKeane]

Excl: London paramedics and ambulance staff experienced more than 2,000 incidents of violence and abuse last year, new figures have revealed.

Incidents included paramedics being attacked with weapons, sexually assaulted and targeted with verbal abuse.

https://t.co/bIwwEaWGwS

[ICATT Air Ambulance Service @icatt_air]

Dr Shalini Nalwad, Co-Founder & Director of ICATT Air Ambulance, shared insights at #GICS2024, discussing the future of organ transplantation (Oct 17) & ECMO in critical care (Oct 18). Highlighted how air ambulance & ECMO are transforming patient outcomes.
@shalinih

[Simon Carley @EMManchester]

Never forgotten

[Air Ambulance Charity Kent Surrey Sussex @airambulancekss]

This week marks #OrganDonationWeek and we’re reflecting on the impact of organ donation. 

We often witness the profound courage of families who, during unimaginable loss, choose to save others through organ donation

By confirming your organ donor decision, you can change lives

[Dr Lyann Gross @GrossLyann]

Twitter friends - anyone outside London in an ambulance trust that uses electronic means to send patients safety netting advice for Band 6/non registrants ? Please hit me with ideas .

[Dr Lyann Gross @GrossLyann]

Excited for Day 1 of induction for the first EVER cohort of Band 7 Specialist Paramedics in Primary Care @Ldn_Ambulance . Can’t wait to see the development of this scheme which sees our Band7’s 50% in primary care and 50% in a car using their specialist skills and knowledge .

[Air Ambulance Charity Kent Surrey Sussex @airambulancekss]

Everybody has the potential to save a life. They just need to know how.

Join us this #RestartaHeart Day and learn CPR and how to use a defibrillator for FREE, either online or in-person.

The chance to learn CPR is #InYourHands

Find out more at https://t.co/NVga9MB0Cd

[Journal of Trauma and Acute Care Surgery @JTraumAcuteSurg]

❇️Best of Trauma❇️

The EAST PMG found no mortality reduction with whole blood use, but it did lower transfusion needs, leading to a conditional recommendation for the use of whole blood in bleeding trauma patients.

https://t.co/wtptJ5ZStW