Whether a rare disease affects one child or 100,000, every patient deserves access to care.

I’m introducing a resolution recognizing May 2 as #NKHAwarenessDay in honor of my constituent Luka, the children we’ve lost, the families still fighting, and the need for continued research and education.

With #NKH, severity is tricky to predict, and can’t be predicted from birth/initial presentation. Some children don’t reach milestones past that of a newborn. It's heartbreaking.

May 2nd is #NKHAwarenessDay - please donations for a cure:
www.justgiving.com/page/nkhawar...

#glycineencephalopathy

#NKH can cause profound disability and pain. Child with severe NKH are often unable to walk, eat, talk or live independent lives. They have seizures and are tube fed.

May 2nd is #NKHAwarenessDay - we’re asking for donations towards a cure. Every penny helps: justgiving.com/page/nkhawarenessday2025

A child affected by Nonketotic Hyperglycinemia has two mutations in an #NKH gene and the odds of having a child with NKH if both parents are carriers is 25%.

May 2nd is #NKHAwarenessDay - please donate towards an NKH cure:
justgiving.com/page/nkhawarenessday2025

#nonketoticHyperglycinemia

#NKH is rare. In the UK it’s thought there are 50-100 kids living with NKH, despite an incidence ratio of 1 in 76,000 births. The gap is because of the survival rate for NKH is so low.

May 2nd is #NKHAwarenessDay. Please donate:
justgiving.com/page/nkhawarenessday2025
⁣
#nonketoticHyperglycinemia

Nonketotic Hyperglycinemia (NKH) is a rare disorder in children, where they can't process glycine. It's is a brutal disorder.

May 2nd is #NKHAwarenessDay - swap your coffee for a donation towards NKH Research:
justgiving.com/page/nkhawarenessday2025
⁣
#nkhawareness #nonketoticHyperglycinemia #NKH