Friday, April 1, 2016

Is Kylene is Running Again(?!?!) and Running for Rare Boston Training Update

Guess what blog readers?? I'm running again! Don't worry, I'm starting slow and will work my way back up to where I was, nothing crazy =) I ran an easy 10 miles this morning and felt great! I'm actually thinking of joining the R4R team at Boston this year!! Stay tuned for more details...

ANYWAY, this post is about my Running for Rare teammate, Sarah Batchelder, and the fact that there is less than one month until the Boston Marathon! Sarah has been training hard and completed a 21 mile training run this past weekend with the team.

The R4R team met up Boston on parts of the course for a 21 mile charity training run. It was a chance for the local runners and patient partners to meet up, raise awareness along the course, and spend time getting to know each other. Teammates from both the Boston and Providence teams made an appearance at the event!

Aside from the actual races, this is one of the biggest R4R events leading up to Boston and Providence. It is a huge volunteer-run event that bring as much of the team together as possible. Obviously there are a good number of us that are not local, but it brings together those that are, both runners and patient partners. Volunteers line the 21 mile route to provide water and nutrition every 5 miles for the runners. Thankfully this year was sunny and a gorgeous running day unlike previous years where it has been freezing or even rainy/snowy.

Sarah joined another R4R runner for the run and they were able to be cheered on by her patient partner at the aid station at mile 15. I, of course, was there in spirit! =)

It was a great event for the R4R team to meet up, raise awareness, and come together with a common goal and motivation. I know that I, as a patient partner, and so grateful to all the runners who are using their ability to make a difference in my life and the lives of so many with rare diseases. I hope to one day be able to not only be just a patient partner watching from the sidelines, but running with my runner as the face of a life that was changed by rare disease research.

As these races get closer, please take a moment and consider supporting Sarah as my runner and the entire R4R team. The funding they raise goes directly toward rare disease research which is desperately lacking resources. The motto of the R4R team and the rare disease community is:

"Alone I am rare, together we are strong!"

The rare disease community does not have to be faceless anymore. I am just one person, but even my life is a testimony of the challenges that come with living with a rare disease. Help me, Sarah, and the R4R team make a difference in the rare disease community by supporting Sarah in the Boston Marathon in April. She is just over halfway to her goal, and it would mean so much to me and my family to have you join us in not just raising awareness but also funding to support the research being done for these rare diseases!

So, for those of you than read all the way to the end...APRIL FOOLS! No real running for me yet =P I did run about 200 yads in physical therapy but then my legs forgot how to be legs and the run was over. It's going to take some time, but I will get back to running! I have that hope because of ongoing rare disease research showing the potential for successful treatment of mast cell diseases. Much of that funding is raise through teams like R4R and everyday people who donate for family and friends living with these conditions. Please consider being a part of making a difference in my life and the lives of so many fighting to regain what we have lost!

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