Charity Tandem Skydive in aid of Pitt Hopkins UK
Pitt Hopkins Syndrome (PTHS) is an ultra rare neuro-developmental disorder.It is characterised by severe to moderate developmental delays, problems with motor coordination and balance, breathing anomalies, seizures, severe constipation and severe to moderate learning difficulties. Most children with Pitt Hopkins do not develop functional speech but they understand more than they can express.
Aims of the charity :
- Supporting families via our online support group and hopefully one day a dedicated help line.
- Raising Awareness of Pitt Hopkins Syndrome and finding new families
- Funding towards family get togethers / information days
- Funding and encouraging research into Pitt Hopkins Syndrome.
- To be source of information for families with a child with PTHS.
- To advocate for families with a child with PTHS
The charity have contact with over 60 families in the UK but there are believed to be over 200 diagnosed with PTHS in the UK and very many still undiagnosed.
To book your charity skydive and raise money for Pitt Hopkins UK, go to our booking page or phone us on 01869 278706.
Registered Charity Number: 1167153
Facebook page Pitt Hopkins UK : www.facebook.com/PitthopkinsUK
Pitt Hopkins Awareness Day page : www.facebook.com/PTHSAwarenessDay