Sunday, July 29, 2012

Going the distance....together.

13.1 miles is a long way to run. I've never tried to do it and am not sure I ever will (please don't challenge me). But with summer in full swing, it turns out that our OM Members are in full swing, as well, and are tackling some huge outdoor adventures together - like running marathons. Some people may think that a personal match made between two people on different sides of the world may be a bit hectic and unorthodox. However, we think when you have something in common as personal and important as being a supporter and caretaker of someone with ALS, it closes the distance and makes it feel like the other person is right there for every step of the next journey together - even if that is training and running a marathon. That's what Julie (in Sweden) and Jan (in Colorado) think, as well. But I'll let Julie fill you in on the rest and give you a bit more background... and stay tuned because there's more to come soon! ~Jill

Here's the full download from Julie: 
I am not a runner. I didn't even like to run.  So naturally I've signed up for the Stockholm Half Marathon on September 15, 2012. This is my story.

My mother died of ALS in Oct 2005. I was very involved in her life battling ALS, in general, but specifically while she was in her last few years combating the disease with strength and hope. Ever since then I've wanted to do something to help raise awareness and money towards a cure for ALS. First I needed to heal and step away from my personal experience for awhile. I needed to let my mind and body live life again - happily without worry, pain or fear of how my mom is doing that day and what I might face looking into her eyes but still needing to smile and laugh with super human strength. I come from a family rooted with love, good values and a foundation stronger than most. A family that has faced challenges, adversity and euphoric times; who's core has been shook but is strengthened by facing challenges head on and believing in positive energy, living a life that makes a difference. We believe it's how you live life that really matters.

So I fell in love, got married, moved to a few countries, worked, had a few kids and breathed fresh air again. I am proud of my two children and family, in love with my husband and love where life has brought me today - the journey and all. I am 37 years old and from New Jersey but now living in Djursholm, Sweden (a little town outside of Stockholm). As I was emersed on Facebook, I saw a friend's post about this wonderful organization called Outdoor Mindset. It's an organization who's mantra is: to unite and inspire people affected by neurological challenges through a common passion for the outdoors. It screamed my name and therein began the end of my search of figuring out how to raise awareness for ALS. I emmersed myself in the website and immediately signed up and reached out.

The road ahead... running!
Being that OM's mantra is uniting people affected by neurological challenges; they immediately connected me to another woman, Jan, who lost her Mom to ALS. Together Jan and I will be running in separate races across the globe from each other - she resides in Colorado, I in Sweden- to help raise awareness and funding together towards a cure for ALS. Please join us on this blog to follow our journey and get to know us on our mission to make a difference and find a cure for ALS. We will also be raising funds for the ALS Association on their website, here.

Now the best part is going to be following us on our path as we run in our separate races across the world while trying to raise money and awareness for ALS. We will share our emotions as caregivers and daughters of people with ALS. We hope to reach others affected by ALS or any neurological challenge on our blog. Oh, and there will likely a few belly aches and pains as we train and keep it real.

I'm not exactly a natural runner but I figured if my mom can endure a 5 year plus battle with ALS with superhuman strength, head on and with relentless hope then, well, I can run a half marathon. I hope. I thank goodness I have Jan, a natural and professional at my side helping me as she trains for her two races in August and October.

At least the view is nice in Sweden!
So I'm running. I'm running to support my fellow OM member Jan who's in CO running for the same reasons I am - our buddy support system.  I'm running for all of you living with ALS, for all of you with a loved one living with ALS, for all of you that have lost the battle to ALS, for all of you that know what ALS is and want to give it the big finger and for all of you that want to take the stairs but have to take the elevator because of ALS. I'm running for you, Dad, who would've gone to the poorhouse (and I think almost did) figuring out how to fight this disease for her with all of the homeopathic, holistic and cutting edge non-insured covered drugs and procedures with the hope of saving your love and soul mate. I'm running this for you Mom - my inspiration on how to fight and live large until the end.

Follow us along as we train. And if you're now intrigued, check out the full Outdoor Mindset site to understand all that this wonderful organization does to help people affected by a neurological challenge and why getting outdoors in any shape or form can heal. There are many ways to be involved. Perhaps you may want to join too?


Sunday, July 22, 2012


We are so excited to announce a new partnership with Can Do Multiple Sclerosis, an organization we have greatly admired from our creation and along every step of the way. Can Do MS is a leading provider of innovative lifestyle empowerment programs for people with MS and their support partners. Leveraging the powerful legacy and principles of former Olympian and organizational founder Jimmie Heuga, Can Do MS has helped thousands of people living with MS reclaim a sense of dignity, control and freedom by empowering them with the knowledge, skills, tools and confidence to transform challenges into possibilities.

What inspires us most about Can Do MS, and probably what connects us most deeply, as well, is their positive outlook on living with a neurological challenge. They say that by focusing on what you can do, their programs can provide a whole new way of thinking about and living with MS. And now, as a partner of Outdoor Mindset, we can focus on ways to do this together to serve all of our members!

We've made some great strides on being able to serve our community of MS Members, and our partnership with Can Do MS is going to provide us even more opportunities and insights on where we should go next. Here's a great story from one of our Outdoor Mindset Members and Guides living with MS, with a serious 'can do' attitude, who recently enjoyed a great hike with through OM Meet-Up Groups:

Sandy joined Outdoor Mindset looking for some hiking partners. Sandy is a massive and serious hiker and after being diagnosed with Multiple Sclerosis, continued her hiking passion using forearm crutches (along with doing some other awesome adaptive sports like monoskiing and handcycling!) She says she's still a pretty serious hiker, although she's had to adjust her expectations a bit with a slower pace. She's had trouble finding hiking partners because her pace is a little slower than the average hiker, however she can seriously hike all day - like 11 miles!

Sandy attended a recent Outdoor Mindset Meet-up Group doing the Twin Lakes Hike near Boulder, and here's what she had to say after:

"It was so wonderful for me to have such great company for a hike in one of my favorite places in the world. And I think we were so well matched as far as hiking ability! And how wonderful to have hiking companions that were not freaked out by my crutches and I wasn't the weird, disabled one trying to keep up with the able-bodied folks. Instead, I just was one of the group and it was so very lovely. Thank you so much for setting this up!"

And Sandy wasn't the only one feeling inspired that day. Another hiker from the Meet-Up group wrote in:
"It was good to spend time with others who have similar conditions.  And what an inspiration Sandy is -  wow."

I'd say that was a pretty exceptional day for all! We are SO thrilled to be able to help nurture this experience between our Members and can't wait to spread the love with Can Do MS, as well!

Don't forget to check out our Meet-Up Groups in:
Boulder, CO 
Hanover, NH
Cincinnati, OH 
...and more to come!