<div>Imagine your child is born with an ultra-rare genetic disease 
</div>
<div>— AGO syndrome.
</div>
<div>So rare that there is no treatment. So new that it was first described just one year before our son’s diagnosis.
</div>
<div><br />
</div>
<div>Albert is now six and a half years old.
</div>
<div>He has never said “mama” or “dada.”
</div>
<div>Though we wait with all our hearts, we know that with each passing day, the chances slip further away.
</div>
<div>The disease is progressing. And there is no therapy.
</div>
<div>Every day brings new challenges that current medicine cannot solve.
</div>
<div><br />
</div>
<div><br />
</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/85337045_1753279107266821_r.jpeg" width="100%" />
<div><br />
</div>
<div><br />
</div>
<div>It began with unease — Albert wasn’t developing like his peers, and soon his younger siblings overtook him.
</div>
<div>The first diagnosis — autism — came when he was just 13 months old.
</div>
<div>We still believed that intensive therapy might be enough.
</div>
<div>But the real blow came later: the diagnosis of AGO syndrome (a mutation in the Ago1 gene).
</div>
<div>The world stopped.
</div>
<div><br />
</div>
<div>This disease is caused by a mutation in a gene that leads to neurological disorders, epilepsy, motor delays, and traits of the autism spectrum.
</div>
<div>It all fit.
</div>
<div>Except for hope — nothing about it fit.
</div>
<div>So we made a decision: we had to act.
</div>
<div>We would develop a treatment for Albert and the other 60 children in the world with this condition.
</div>
<div><br />
</div>
<div>Together, my husband and I are scientists — graduates of some of the world’s leading universities: Oxford, Cambridge, UCL, and Edinburgh.
</div>
<div>We have the knowledge, the skills, and the plan.
</div>
<div>We built an international team of researchers working with us to develop a therapy.
</div>
<div>We know what needs to be done.
</div>
<div>We know how to do it.
</div>
<div>But we cannot do it alone.
</div>
<div><br />
</div>
<div>Right now, everything depends on funding.
</div>
<div>We’ve established a foundation that works globally — but drug development is extremely costly.
</div>
<div>We must act now, and we need help.
</div>
<div><br />
</div>
<div><br />
</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/85337045_1753279129883043_r.jpeg" width="100%" />
<div><br />
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<div><br />
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<div>Rare diseases include 10,000 different diagnoses.
</div>
<div>Although 300 million people worldwide are affected — as many as have diabetes — for most, it’s still not “profitable” to develop a treatment.
</div>
<div>But every breakthrough — like the one for SMA — paves the way for other rare diseases, like AGO syndrome, affecting just 60 children globally.
</div>
<div><br />
</div>
<div>Thanks to private support, we’ve already created the first stem cells to study how drugs affect the Ago1 mutation that causes AGO syndrome.
</div>
<div><br />
</div>
<div>Every day is a closing developmental window.
</div>
<div>Every week is time Albert won’t get back.
</div>
<div><br />
</div>
<div>Albert is a cheerful boy with blue eyes.
</div>
<div>He loves songs, swings, and water.
</div>
<div>He has younger siblings who show us each day how much he’s missing.
</div>
<div>And he has parents who aren’t afraid to act.
</div>
<div><br />
</div>
<div>Developing a treatment is his only chance.
</div>
<div>Without it, Albert will never be independent.
</div>
<div>He will never say, “Thank you, Mama.”
</div>
<div>He will never play hide and seek with his siblings.
</div>
<div><br />
</div>
<div>Help us give him that one chance.
</div>
<div>Save his future.
</div>
<div>Support us.
</div>
<div>Share this.
</div>
<div>Join us.
</div>
<div><br />
</div>
<div><br />
</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/85337045_1753279177646842_r.jpeg" width="100%" />
<div>Follow us on:
</div>
<div>WWW: <a href="https://www.agoresearch.org/" target="_blank" rel="noreferrer noopener"><a href="https://www.agoresearch.org/" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.agoresearch.org/</a></a>
</div>
<div>Facebook: <a href="https://www.facebook.com/profile.php?id=61571454506995&amp;sk=photos" target="_blank" rel="noreferrer noopener"><a href="https://www.facebook.com/profile.php?id=61571454506995&amp;sk=photos" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.facebook.com/profile.php?id=61571454506995&amp;sk=photos</a></a>
</div>
<div>Linkedin:<a href="https://www.linkedin.com/company/ago-research/?viewAsMember=true" target="_blank" rel="noreferrer noopener"><a href="https://www.linkedin.com/company/ago-research/?viewAsMember=true" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.linkedin.com/company/ago-research/?viewAsMember=true</a></a>
</div>
<div>Instagram [PL]: <a href="https://www.instagram.com/lekdlaalberta/?hl=en" target="_blank" rel="noreferrer noopener"><a href="https://www.instagram.com/lekdlaalberta/?hl=en" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.instagram.com/lekdlaalberta/?hl=en</a></a>
</div>

Anonymous

Michal Zdzieborski

Anna Dowbaj

Martyna Popis

Sarah Sharp

Elodie Weber

Zofia Fedorowska

Sophie Spaan

Verity Thenard

Aigerim Shaikhina

#MissionAGO Developing cure for AGO syndrome

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#MissionAGO Developing cure for AGO syndrome

Still £28,092 to go. Help us build momentum.