Race Update:Elaine Benton.
- Read the story of my race at the Running for Rare Diseases blog
- Elaine Benton covers the race in her Huffington Post column: I Run in My Dreams
10 Ways to Support the Roses Run for Gaucher
In her poetry book, Parkinson's, shaken not stirred!, Elaine expresses what it is like to live with not just Gaucher, but also Parkinson’s, which she was diagnosed with at the age of 44. A verse from Elaine's poem, Each Day, motivates my upcoming night of running:
And finally once exhaustion, takes over me,I hope my run will raise rare disease awareness, especially of Gaucher disease and the Parkinson’s link.
Into the land of dreams, from my body I am free,
I can climb walk and run, or swim in the sea,
Without pain, till awake, I can blissfully be.
Current Science News about Gaucher & Parkinson's: "A better understanding of the link between Gaucher and Parkinson’s may shed light on what causes Parkinson’s in general."
10 Ways You Can Support the Run:
- Read and share our story.
- For those in the local area, come out and cheer!
- Send your good vibes from any corner of the globe.
- Join my Mom in lighting a candle.
- Suggest a motivating song for my race playlist (I will be using my headphones once the sun comes up for the second half of the race).
- Drink a cup of coffee or tea and make a toast for running energy. (I’ve given up coffee for 20 days in preparation for the race and look forward to enjoying my own thermos with you along the route.)
- Plant a rose or give a bunch to make someone’s day.
- Pick a time to move with me during the race. Run, jog, walk, hike, shuffle or dance for any amount of time/distance.
- Pledge to donate to a Gaucher or rare diseases organization. You can pledge an amount for each km I manage to complete or select an amount to donate if I complete a particular distance of your choosing (be careful what you select as it could add up quickly over 100km).
Potential Gaucher groups to donate:
Israeli Gaucher Association
- To locate Gaucher organizations in other countries, visit the EGA directory
Potential rare disease umbrella groups to donate:
European Organization for Rare Diseases (EURODIS)
- Directly support development of the My Normal storytelling toolkit by making a “directed contribution” to the NGF Canada. Please note “storytelling toolkit” in the comments section when making your online donation. We are growing a how-to guide for the rare disease community that will be available fall 2014, in time to support story generation for February's Rare Disease Day 2015. The toolkit will build on the Storytelling for Health poster presentation and include feedback from the 50 storytellers in community that took part in our recent survey.
I anticipate taking around 13 hours to run the 100km distance (an approximate average pace of 8minutes/km). You can easily determine the race start time for your location using the Time Difference Calculator. The race (the Ulmer Laufnacht) begins at 11pm, German time on Friday, June 20th.