A fellow blogger and runner at Shoe Laces and Bibs is hosting a virtual 5k to support a little girl diagnosed with Dystonia. I have registered and wanted to share. This is a great opportunity for a guaranteed excuse to run (or walk), contribute to a good cause and get a medal. Read her story:

In Dystonia, your muscles contract involuntarily — causing uncontrollable repetitive or twisting movements of the affected body part. Your symptoms may be mild or severe, and may interfere with your performance of many day-to-day tasks. For Shaylene who loves to dance and play with her 4 year old friends this is a life altering disorder to live with.  It’s in front and side of her neck. While her knees, ankles, jaw, neck and the base of her skull are effected by Arthritis. She’s always been in pain, since she was born. The past year has been challenging as new things are presenting themselves that are causing more pain for Shaylene.

 

Shaylene is the soon-to-be 5 year old who I was matched with through Who I Run 4 last July. Her mom, Angie, and I are more connected than I ever imagined we’d be when we first met via Facebook. We send each other cards, presents, text messages, videos and pictures. Shaylene is such a great cheerleader and I love dedicating my runs to her and sending her medals and bibs from my race. It’s been such an incredible journey. One, that I know will continue forever.

 

 

 

As Shaylene and I reach our one year anniversary of being matched I thought it would be only appropriate to celebrate with a virtual 5k. Since we live states a part this virtual race would give everyone a chance to run, walk, jog or skip the same distance in the same time frame. We can pretend we’re running together! July is such a special month, not only because it’s the month we were matched, but because we’ll both be celebrating big birthdays!

 

 

 

This 5k will benefit Shaylene and her family as the medical expenses are building since insurance only covers so much.  This 5k will also benefit the Dystonia Foundation.

 

Dystonia not only effects Shaylene but impacts her family. Let’s take a look:

  1. They drove just under 12,000 miles to doctor appointments last year.
  2. Every Monday they drive 3 hours {there and back} to do OT, PT and Speech Therapy. Two of these therapies take place before noon and other happens after lunch time.  Insurance covers all but $60 for these therapies, which means that Shaylene’s family spends $240 dollars, plus lunch while they are there, a month.
  3. Medications for Shaylene run around $180 a month. They have a new drug they’ll be starting soon, which will be very expensive- around $100 a month for this single medication.
  4. Trips to the Mayo Clinic always include at least one night stay.  They’ve once stayed 5 nights in a row for testing and therapies.  They have to pay for gas, hotel, and eating. The drive time is 5 and half hours one way.
  5. So far this year, they have been to the Mayo Clinic in Jan, Feb, March, April, May and will go in June and August and then every two months after that.
  6. They are looking into a medical stroller for neck support and better leg support since Shaylene can’t walk around for long periods of time.

Please visit her Facebook Community to follow her journey and offer support along the way- Shaylene’s Dream I hope you’ll join me as I support Shaylene and spread awareness for her rare disease!


How does this virtual 5k work?

  • First, you’ll need to register by clicking on the button below. You’ll pay and fill out your information at the same time.
  • The registration fee is $25. What does that registration fee get you? A beautiful medal- see below

 

 

  • You can register from now until July 20. Feel free to join the Facebook Event and share with your family and friends.
  • The virtual race will take place between Wednesday, July 23 {the day Shaylene and I were matched} and Sunday, July 27. You decide when to complete the race.
  • Print out the bib that will be sent to you via email
  • Next, sprint, run, walk, bike, jog, skip 3.1 miles to earn your 5k medal!
  • Take a picture with the bib after your activity and send it to me via email or post it on the Facebook Event page
  • Use the hashtag #Sprint4Shaylene when posting about this event on social media

Fundraising amount will be announced at the beginning of August and will be split between Shaylene’s family and the Dystonia Foundation.

  Register for the virtual 5k here

Please email shoelacesandbibs at gmail dot com if you have any questions. Thank you so much for your support! It means so much! I cannot wait to celebrate this amazing little girl!

 

And now for our giveaway results! Our two 3 month subscriptions go to: Ashley and Journey for my Baby!! Comment or email me (theresajpowers at gmail dot com) so I can forward your information. If I do not receive a response in 48 hours I will have to choose another number.