Elly

Mama , charity founder, nostalgic about my past life as an adventurer. More over at @mikaereFDN

[Ruth Barnett @RuthBarnett]

Huge congratulations to David Baker, @DemisHassabis and John Jumper on winning the Nobel Prize for AlphaFold / protein folding. Like most former or current DeepMinders, I thought this day would come, but not so soon.

Why does protein folding matter? There are many answers, but mine is a boy named Mikaere.

When he was just a baby, he was diagnosed with Nonketotic Hyperglycinemia (NKH), a rare genetic disorder that would rob him of his life - one in three children won’t see their first birthday, of the children who do, the average age of death is between four and eight.

NKH, like so many diseases, is a protein folding problem at heart. Because of a genetic mutation, much needed proteins don’t fold correctly, and can’t be used. In NKH and Mikaere’s case, this caused profound disability. Understanding more about proteins could unlock treatments, or even a cure, for kids like Mikaere.

Before the work of David Baker, Demis Hassabis and John Jumper, and so many others, predicting the structure of a single protein took someone their whole PhD. By 2022, AlphaFold had mapped nearly 200 million.

A cure didn’t come fast enough for Mikaere, who died just weeks ago, leaving an extraordinary hole in the universe and the lives of all who loved him. His parents Elly and Sam continue to campaign for funding for a cure for others.

THIS is what AI can be for, and this is why protein folding matters.

Congratulations team. Telling the story of AlphaFold was a highlight of my time at DeepMind.

[Elly @ellyrarg]

@tomi_adeyemi :( what an ass. He is the negative that people keep hearing about. That’s horrid :(

[Elly @ellyrarg]

@joelycett sperm cotton 😊🍼🍆🦐

[Elly @ellyrarg]

@bertrandmight just saw this on FB! Very exciting! https://t.co/x5N8JHFQAA x

[Frank Turner @frankturner]

#BeMoreKind: today is NKH Awareness Day - make a £3 donation by texting ‘NKHC50 £5’ to 70070. Supporting kids with NKH like #teamMikaere

[Elly @ellyrarg]

Aaaaand we're doing an NKH Q&A session over on IG and Facebook (looks for teammikaere) if you're keen. Feel free to ask anything - we're wide open for the curious! x

[Elly @ellyrarg]

Also - we're asking people to pass in their morning starbucks and donate £3 instead - it all goes to NKH Research!

[Elly @ellyrarg]

Oh hai! Happy NKH Awareness day! You can follow more about kai over at @teamMikaere if you're interested :)

[Patient Worthy @PatientWorthy]

This #WorldBookDay, we're recommending Eva the Adventurer, a children's book by a rare mom. It's beautifully illustrated, available in multiple languages, and the proceeds help fund #NKH research. #TeamMikaere @JosephsGoal @ellyrarg https://t.co/sNqcJakYA8

[Elly @ellyrarg]

New Post on the Blog! Mikaere's Grandma is in an Art Group. Earlier in the year they ran an exhibition, where a percentage of sales would go towards NKH Research, and they would collect donations, run a tombola and have a coffee/cake morning.

Well. What an AMAZING event!

W…

[Elly @ellyrarg]

New Post! On the Art Exhibition

Mikaere’s Grandma is in an Art Group. Earlier in the year they ran an exhibition, where a percentage of sales would go towards NKH Research, and they would collect donations, run a tombola and have a coffee/cake morning.
… https://t.co/Pqo77iHi4T

[Elly @ellyrarg]

@jennromolini If you're looking at kids books, can I suggest Eva the Adventurer? It's quietly feminist, is available in bilingual (read: English + another language at the same time!) and supports a kids charity. Worth a look? https://t.co/TZHmRiZYVn

[Elly @ellyrarg]

Mikaere is doing really well, for the most part. We know this. We know his eyesight is improving and his tone and abilities are improving. We know Mikaere is doing the best he can and we're currently in a time of forward momentum when things are good.
.
Except that we went a…

[Elly @ellyrarg]

New Post! On the MRI

Mikaere is doing really well, for the most part. We know this. We know his eyesight is improving and his tone and abilities are improving. We know Mikaere is doing the best he can and we’re currently in a time of forward momentum wh… https://t.co/mn4zrgo7EK

[Elly @ellyrarg]

New Post! On the #ifhnkh Tees!

There’s an acronym that NKH parents use when we’re struggling. IFHNKH. Short for I fucking hate NKH. Typically used when our kids are struggling and in pain and there’s nothing we can do. That feeling of helplessness and r… https://t.co/xSm5D6Ypg0

[Elly @ellyrarg]

New Post! There’s an acronym that NKH parents use when we’re struggling. IFHNKH. Short for I fucking hate NKH. Typically used when our kids are struggling and in pain and there’s nothing we can do. That feeling of helplessness and rage and just… I hate NKH. I really do. It’s…

[Elly @ellyrarg]

New Post: On finally finding the right bath support. When your son can’t hold his head up, let alone sit in a bath unaided (and almost a year ago grew out of his baby bath) what do you do?
.
For a while we’d just get in with him. And that worked well until bath time was comb…

[Elly @ellyrarg]

New Post! On finally finding the right bath support

When your son can’t hold his head up, let alone sit in a bath unaided (and almost a year ago grew out of his baby bath) what do you do?

For a while we’d just get in with him. And that worked well unti… https://t.co/Zu7Pnkbj1w

[Elly @ellyrarg]

Fly High, Sweet Halle Mae.
It feels surreal. I’m having dinner with Sam, Mikaeres asleep in the crib nearby and everything is just going onwards as if it’s just a normal day. We’re talking and discussing the weather. It feels surreal because I know, up in Manchester there’s…

[Elly @ellyrarg]

New Post! Fly High, Sweet Halle Mae

It feels surreal. I’m having dinner with Sam, Mikaeres asleep in the crib nearby and everything is just going onwards as if it’s just a normal day. We’re talking and discussing the weather. It feels surreal because I … https://t.co/ROVzd12wGJ