About me

I have been writing poetry and stories since I was a child, and a love of reading was instilled in me from an early age. I am passionate about writing, and hope you enjoy the books I have written. Whilst most of you sleep soundly in your beds, like many Parkinson’s patients, insomnia dictates, so during those hours that sleep eludes me, the house is tranquil and quiet, an atmosphere perfect to immerse myself in writing. My life has been a series of strange events, which have without doubt contributed to my creativity. To publish anything is to bear one’s soul to the world. It is to stand naked and let everyone see who you really are. I have poured my heart and soul out on paper and I hope to share this journey, immersing you in a story, capturing your attention and firing the imagination. Through my writing and public speaking I hope to bring greater awareness to the general public about living with chronic disease.

Friday, April 25, 2014

Running For Rare Diseases

On April 21st, participants who took part in this year's Boston Marathon, not only paid respect to those who tragically lost their lives or were injured on April 15th 2013 in the Boston Marathon bombing, but together showed  the world that Boston remains strong.

The Boston Marathon is a very challenging course with many participants which can slow a runner down considerably. I heard about a group calling themselves the "Running For Rare Diseases Team" and appropriately the theme for this year's marathon was "we run together", where members of the team are paired with patients representing a variety of over 20  rare diseases. One runner, Andrew Scholte, completed the marathon in an amazing time of 4:01:28. Andrew, a scientist at Genzyme (which is one of the companies making the Enzyme Replacement Therapy for Gaucher patients), was paired with Emma Rooney who is a fellow Gaucher patient.

As Emma is not in Boston at present, she ran simultaneously in the town where she currently resides, proudly wearing green shoe laces which were a creative and novel concept used to symbolize Gaucher disease Awareness Month last year. 
Most of my family and friends enthusiastically joined in by wearing green shoe laces to show support for Gaucher Awareness Month last year. Perhaps this could become a yearly way of marking the month. You'd be surprised how many people noticed the bright green laces and asked about them, creating a great opportunity to speak about Gaucher and spread the word.

I heard from Emma once she had completed the marathon in just over 5 hours - and wished her congratulations on a great achievement. This was part of her message:

"It was a neat experience connecting with the Boston Marathon in my own small way. After just over 5 hours I had completed the marathon distance I set out to do and headed home to track Andrew's final kilometres to the official finish line. It was pretty emotional knowing that he was running for me and that last year he didn't get to finish his run because of the bombings."  

Emma's remarkable story was the inspiration for my article this week in The Huffington Post which is about setting achievable goals.

No comments:

Post a Comment