100 mile cycle ride with CTC friends to raise money for Pitt Hopkins UK

Thanks for clicking on this link and offering to donate to our UK charity. I am very grateful.

Let me explain why I am doing the ride :

Firstly, I recently started volunteering as a Trustee with a small charity called "Pitt Hopkins UK'. I am really enjoying supporting this dedicated group of parents who continually strive to better understand Pitt-Hopkins Syndrome (PTHS) and to come up with new ways to support their children.

Secondly, I have joined a great cycling group here in Edinburgh called " CTC Edinburgh, Lothians and Borders" who have been most welcoming to me, as a fairly new resident of the city. We cycle regularly on Wednesdays and Sundays. and the club also offers a Tuesday evening spin. They are a great bunch and hence I am looking forward to riding this challenging 100 mile cycle (7,280 feet ascent) with a sub-group of them on June 19th in Midlothian. We will of course be stopping off for coffee & cake (purely for nutritional reasons !) whilst enjoying our usual banter. I am reluctant to make any predictions about the Scottish June weather....

Some background on Pitt-Hopkins Syndrome (PTHS):

PTHS is an ultra-rare neurodevelopmental condition affecting a specific gene in chromosome 18 called TCF4. The symptoms become apparent in childhood and are typically characterised by developmental delay, breathing problems, recurrent seizures, gastrointestinal issues, lack of speech and distinct facial features. In the UK and Netherlands prevalence is estimated as 1 in 225,000 to 300,000.

The money we raise aims to significantly improve awareness levels of PTHS, particularly among health professionals and to support and advocate for families. Additionally we would like to fund some specific research in dedicated areas.
Every little helps so please donate what you can, especially in this tough financial climate.
Thanks a million for your support. Maryrose