CDKL5 Awareness Event 2017 great success with help from local support

CDKL5 Awareness Event 2017 great success with help from local support

Wednesday 11th October saw Limerick’s 5th annual CDKL5 Awareness Event 2017. In previous years the event consisted of a park to park walk, accompanied with different extras such as balloon release, tree planting and CDKL5 ribbons. This year they wanted to do something different, so they organised an awareness health and coffee morning. The event took place in Garryglass House, in Our Lady of Lourdes community. Participants were able to sample different health and wellbeing related treatments while at the event. There was nailcare, auricular acupuncture, blood pressure check up and indian head massage. There was also a CDKL5 information wall and a collage of photos from the previous year’s events. All participants were also immortalized in a photobooth with a CDKL5 frame.

The event was a great success with local people popping in to try the various treatments, as well as having a cup of tea or coffee and some nibbles.

Maia Malone, a girl of 10 years of age who suffers from the condition, popped in to say hello to everyone with the help of her dad, Brendan. Maia was diagnosed with the condition when she was 4 years of age. At the time there were only about 200 known patients with the diagnoses around the world. Since then awareness has spread among doctors and families, and more children are being diagnosed at an earlier stage all the time. Currently the estimate is that there are somewhere around 1000 patients with the condition around the world.

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Awareness raising is the main reason for the CDKL5 Awareness Event 2017. Jonna, Maia’s mum believes that by spreading the word about rare conditions such as CDKL5 more people hear and learn about them, and diagnoses can be established earlier and earlier.

A big thank you to all who helped in organising this year’s event and those who sponsored the event by donating their services, refreshments and spot prizes for the raffle:  Limerick City Community Development Project staff, Limerick City Drugs Education Prevention Strategy staff, STEPS School Completion Programme staff, Nuala O’Mara, Sheila Cullinane, Chloe’s Nails, Niahm’s Hair Salon, Our Lady of Lourdes Community Services Group, and Paddy Dooley Catering. Without your help the event would not have been possible. Thank you!

Thank you also to all who participated on the day, and made donations towards CDKL5 Ireland from the coffee morning. A total of €90 was raised and lodged directly to CDKL5 Ireland account.

If you would like to learn more about CDKL5, you can do so by going to the irish webpage cdkl5.ie.

For more stories on CDKL5 click here