Trekking nearly 6,000 miles across the U.S. to raise money for the Challenged Athletes Foundation.

Recently, I had the pleasure of meeting a remarkable young man from Sweden, who is touring the US on an ElliptiGo, a bike for challenged athletes. On his journey across the country, Andreas Johansson, afflicted with Charcot-Marie-Tooth disease (CMT), hopes to raise awareness of CMT and money for the Challenged Athletes Foundation® (CAF). CAF is a world leader in creating athletic opportunities for individuals with physical disabilities.

Andreas on ElliptiGO

photo by Liza Ahner Andreas on ElliptiGO

Before beginning his journey, Andreas contacted the Charcot-Marie-Tooth Association, about his tour and his wish to meet others with CMT. After learning about Andreas, I immediately reached out to invite him to visit Albany. Shortly thereafter I received a pleasant surprise, Andreas emailed on  Sunday night indicating he planned to be in Albany on the following Wednesday. I scrambled to send out an email blast to my Upstate NY CMT group letting them know of this opportunity to meet with Andreas.

On Wednesday night eight of us met up with him at the Albany Pump Station Brewery and restaurant for dinner and promptly bombarded him with questions about his travels and the ElliptiGo bike.

Andreas & Upstate NY CMT

David Christine Andreas Melinda Howard Liza Ida
photo by Paula Bossert

During his travel through San Diego Andreas learned about the ElliptiGO, the first low-impact, outdoor, fitness device specifically designed by runners to emulate  the running motion.

Andreas said, “I see the ElliptiGO as the perfect middle ground   between cycling and running.”

We also learned that after riding up to 60 miles per day, Andreas sleeps in his tent when he doesn’t have a couch-surfing connection. On this cold and windy night he had no problem with an offer to spend the night with one of our group.

Andreas with ElliptiGO bike

Andreas with ElliptiGO bike
photo by Melinda Lang

Before dinner I emailed the publisher of Lower Extremity Review (LER), Richard Dubin, who I had the pleasure of meeting at the opening reception of the Art de Cure for CMT gallery at Clinical Prosthetics & Orthotics (CPO), suggesting he write a story about Andreas. LER has featured articles on AFO use with CMT and an article for CMT Awareness Month last September.

The next morning, while at my orthotist appointment at CPO, I learned my orthotist had also contacted Dubin about interviewing Andreas. My orthotist and his wife, had dined with us at the Albany Pump Station, and invited him to stop by the office to be fitted for insoles and to try on an AFO.

After leaving Albany, Andreas is trekking to Boston with many detours along the way. I encourage other support groups to contact Andreas to see if he may be coming through your area. When he finishes in San Diego, Andreas’s nearly 6,000 mile journey will be the longest ever completed on an ElliptiGO

On Andreas’ website he relates a story about when he was 8, while following his father on a hunting trip, he struggled to walk quietly. However, with every step he took he heard the loud slapping of his foot dropping from CMT.  His brother said,  “It is easy. All you have to do is put down your heel first and then roll down your foot.” What they did not know at the time, was that Andreas’ nerves had stopped sending signals to his lower leg and foot muscles, which made it impossible for him to lift his foot enough to walk quietly.

Read more on Johansson’s journey on his CMT Challenge blog. http://cmtchallenge.com/

In the middle of writing this post, inspired by Andreas, I put on my exercise clothes and went to the gym. Lately I have been so busy, it has been easy to find an excuse not to make it to the gym. So thank you Andreas for the push I needed to get off of the couch and back into fitness.

Donations to the Challenged Athlete’s Foundation in Andreas Johansson’s name can be made on his fundraising page: http://RaceforaReason2012.kintera.org/CMTChallenge

To learn more about Charcot-Marie-Tooth Disease, visit http://www.cmtausa.org
For more information about ElliptiGO and its products, visit http://www.elliptigo.com.

Read more about the Challenged Athlete’s Foundation, visit http://www.challengedathletes.org

Resources:http://www.prweb.com/releases/2012ElliptiGO/04CMTChallenge/prweb9354676.htm
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This entry was posted in AFO, Charcot-Marie-Tooth disease, Fundraising, Health CMT, Neurologist, neuromuscular disease, peripheral neuropathy, physical therapist and tagged , , , . Bookmark the permalink.

3 Responses to Trekking nearly 6,000 miles across the U.S. to raise money for the Challenged Athletes Foundation.

  1. Pingback: Switch to Allard carbon composite AFOs increases calf circumference, study finds | Living Well with CMT (Charcot-Marie-Tooth)

  2. Pingback: New U-M stem cell line looks to tackle Charcot-Marie-Tooth disease | Living Well with CMT (Charcot-Marie-Tooth)

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