Resources for families


Our letter to newly diagnosed families

Dear newly diagnosed parent, 

The day our kids were diagnosed with AGO2/Leskres syndrome was devastating, crushing, hopeless. We couldn’t see a future as a happy family and felt broken.

"Keep going. That’s all you have to do, ever. ... Just keep going, please. Slowly is fine. Crawling is fine. No feeling is final. Except hope." Glennon Doyle

We had to allow ourselves to grief the loss of the life we had imagined. If you wish to learn more about the stages of grief, this is a good overview. Emily Perl Kingsley wrote a poem about raising a son with Down syndrome, that may help you after diagnosis.

We know affected children can develop very differently. While Paula is currently seizure free, walked at 16 months and understands her parents, Finn hardly learnt to walk and will never be able to speak. 

We don't know what the future will hold, but we will do our utmost to help all our children live their lives to the fullest.

Love, Nora, Christoph and Antje

Have hope, especially in this day and age of incredible breakthroughs in biomedical technology.

Andrew Lo, Prof. of Finance at MIT and rare disease advocate

Get support and contribute to the cause


If you feel broken or isolated after diagnosis, know that you are not alone.

If your doctor can't tell you how other kids do, see for yourself and ask other parents what you want to know.

Connect with others in our private family support group on Facebook. Or get in touch with us.

Sign up for our newsletter to receive important association & research updates, and get invites to community events and webinars.



-- For now please subscribe to our mailing list and join the Facebook group so we know you are part of our family --

You are part of the pathway to a cure.

Better understanding of disease is critical to developing drugs and designing trials.

Join our patient registry to help understand the disease and advance research, and to be contacted for a chance to participate in research or trials.

Get involved

If you wish to help, and when you're ready,

  • Share your story to become a lifeline for other families and tell the world why we need to find a cure,

  • Join our team or recruit among your family & friends,

  • Donate to fund critical research,

  • Participate in our bio-bank by donating blood or a skin biopsy,

  • Raise funds in your community to support the cause and advance research: Fundraise for your birthday. Add your story and fundraise with our website. Organize an event.


We would like to thank the following individuals and organizations.