Race Update:

Thank you to everyone who supported the Roses Run for Gaucher disease. Your donations in honor of the race, messages of support, good vibes, lighting of candles and sharing roses, supported me to meet my 100km goal and raise awareness for Gaucher and rare diseases along the way. It was a great joy to be able to run this special race for Elaine Benton.

10 Ways to Support the Roses Run for Gaucher 

My name is Emma Rooney and on Friday, June 20th, I will be starting a 100km night ultra-marathon in Ulm, Germany. I’m a Canadian, living in Germany, with type 1 Gaucher, a rare genetic disease. I’m running my ultra-marathon for Elaine Benton, an inspiring writer and poet. Elaine, born in England and living in Israel, also lives with Gaucher. Beyond Gaucher disease, we share a special pink roses bond and I’ll be carrying rose petals from Elaine’s garden for my run.

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,
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.
I hope my run will raise rare disease awareness, especially of Gaucher disease and the Parkinson’s link.

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: 

  1. Read and share our story.
  2. For those in the local area, come out and cheer!
  3. Send your good vibes from any corner of the globe.
  4. Join my Mom in lighting a candle.
  5. 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).
  6. 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.)
  7. Plant a rose or give a bunch to make someone’s day.
  8. Pick a time to move with me during the race. Run, jog, walk, hike, shuffle or dance for any amount of time/distance.
  9. 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: 
    Gaucher Gesellschaft Deutschland (Germany)
    Israeli Gaucher Association
    European Gaucher Alliance (EGA)
    • To locate Gaucher organizations in other countries, visit the EGA directory

    Potential rare disease umbrella groups to donate:
    National Organization for Rare Disorders (NORD, United States)
    European Organization for Rare Diseases (EURODIS)  

  10. 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. 
Be sure to send an email or leave a comment at the end of this post, with how you’ll show your support, so I know who to think of when, during the race. I’ll be sending my good vibes back as well.

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

Thank you for all the ways you choose to support this initiative. 

Special thanks to Colleen Murphy (the Fitbee) for the online coaching & to Raidlight laufSinn for all the great gear from the contest win!  


  1. Good luck, Emma! The only thing I love more than running to support someone is drinking coffee to support someone, so thank you for making that possible. :-) I will think of you when I have my coffee that morning and give a toast in your honor. Also I am planning to run with Andrew after work that day to run in solidarity with you. And you already know my motivational song suggestions. :-)

    1. I'm so excited that you'll be sipping coffee and running!
      Also your comment led me to your blog, which is wonderful by the way, and I especially took in your post "To Write Love on Her Arms" ( and the message on stories.
      Thanks always for your support and being quick to leave a warm comment.

  2. Well, let me run with you the first 50k! May be i can carry some gels but you run the risk of trusting the Colombian ;)


    1. Felipe you introduced me to the run and your excitement describing it made me really want to take part. I'm so glad we'll be starting together.
      See you at the race, Emma

  3. Dear Emma, we never knew what a hero you are ! Now we're so lucky that YOU were the one to win our Raidlight package !!! We wish you so much fun and success for your run through the night of Ulm. See you at the finish line (at least) Barbara & Andreas, laufSinn

    1. Thanks Barbara & Andreas.
      I'm just lucky and happy to be able to run and of course it was good fortune to win the gear contest. I'm especially looking forward to wearing my flower running skirt for the race! I look forward to seeing you at the start and finish.

  4. If you are looking for an African group to support, I recommend:
    Rare Disease Society of South Africa

    About the group:
    Donating info:
    Contact person: Kelly du Plessis

  5. Good luck on Friday Emma! I will be running with you on Friday! So excited to be part of this day for you.

    1. I'll be thinking of you and Jessi running in Boston! I hope I can keep up. Have a good run and thanks a million for being part of this. It means a great deal. #WeRunTogether

  6. I hope that you take a container of Pineapple juice along with you on the race and have some before the race . It may help you along with Ginger Ale. Non Alchoholic beer may also help you since it has enzymes in it. Shalom.

    1. Pineapple juice for sure. I have ginger candy as well. Being in Germany there will for sure be plenty of non alcoholic beer on hand for the race. I've never tried it but this might be the opportunity. Thanks for the tips and good wishes Joseph.

  7. If you feel like you can't complete the race, don't push yourself to complete it, just drop out.

    1. I'm sure my parents will appreciate this comment as well. I for sure have it as my goal to finish but not at any expense. I want to do this in a healthy way. I will be running for 25 min. and then walking 5 min. to keep my breathing calm and also I have friends to keep me company and lots of snacks. I will stop when it gets too much. This is a run for health so it should be somewhat healthy mission.
      Full agreement with your comment.