MS News

3rd Annual MS Adaptive Ski Day

1.11.16 Sunday River, Newry, ME

On January, 11, 2016 we hosted our 3rd Annual MS Adaptive Ski Day at Sunday River in Newry, Maine with Maine Adaptive Sports & Recreation! Our participants were able to enjoy a day on the slopes free of charge for them with personalized lessons, ski equipment and experienced guides!


ECTRIMS 2016 Overview

ECTRIMS 2016

Overview by Ashley Ringstaff and Kara Friesen

The ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis) Conference took place in London, UK, September 14-17, 2016.

So what is ECTRIMS exactly? ECTRIMS is a conference that works alongside researchers and other organizations worldwide, meeting and collaborating with each other, in order to present breaking MS research news. ECTRIMS is the world’s largest gathering of MS researchers, doctors, scientists, and clinicians – this year, over 9,000 delegates attended, from almost 100 countries! At a conference like ECTRIMS, it’s all about MS, all the time. Everything you ever wanted to learn about Multiple Sclerosis, you can learn here.


Something Amazing! – October blog post by Maggie

Yesterday was Maine Adaptive’s day in Acadia National Park;  specifically at Eagle Lake.   About twenty trained volunteers showed up, with equipment, to help those with physical challenges enjoy outdoor activities and learn to kayak and ride bicycles.   Yes, that’s right, they’re all volunteers who give up their free time and seem to love what they do.   They train in adapting bikes, kayaks and skis to those with missing, or impaired, arms and legs and then they accompany them along the trails, on the lake or down the slopes.

This student doesn’t walk well and has been unable to access the fabled carriage roads that crisscross Acadia.   Yesterday I could!   Two amazing kind and careful volunteers, Craig and his wife Joan, fitted me with a recumbent bike, made sure it was adjusted correctly, and then set off with me on the trail around the lake.   My friend Jackie, able bodied, came along too on another bike and snapped pics all along the way.  

 


Moving with MS

By: Maggie Harling

Well, this month I thought I’d try to write about what it’s like to move to a totally new place and continue to thrive as a person with MS. There are many elements to moving, so I thought I’d focus on three of them.


Inaugural Adaptive Golf Day

7.25.16 Toddy Brook Golf Course, Yarmouth, ME

On July 25, 2016 we hosted our Inaugural Adaptive Golf Day at Toddy Brook Golf Course in Yarmouth, Maine with Maine Adaptive Sports & Recreation! 25 participants enjoyed a day on the course in the beautiful summer weather. Many participants learned how to play the game and some brushed up on their putting skills! We had so much fun and cannot wait until next year.


World Class Equestrian Dreams Become Reality

Nobody ever forgets receiving the news of their Multiple Sclerosis (MS) diagnosis. Ever.

For me it was 14 years ago, after enduring a summer of indescribable fatigue, numbness, tingling and a creepy painful electrical zapping sensation running up my neck called “L’Hermitte’s Sign.” It hurt! Every time my chin came to my chest… zap!


“This is How we Roll”

by: Maggie Harling

I’m medically trained, but the best description of MS I ever heard was from an auto mechanic. “Imagine a car” he said. “Nowadays computers run cars and the computer communicates with the rest of the car by insulated wires.   MS is a disease that eats away at that insulation, causing the message to be lost or even jump to another wire. Effect? Some things in the car work, and others don’t”. What he didn’t say, which is also true, is that MS can also get into the computer itself and wreck the wiring there, allowing crazy messages to be passed to the car.

Merck KGaA, Darmstadt, Germany, Receives European Medicines Agency Acceptance for Review of Marketing Authorization Application for Cladribine Tablets

MERCK VIB_M_MOS VmVyRp_4C

DARMSTADT, Germany, July 18, 2016 – Merck KGaA, Darmstadt, Germany, a leading science and technology company, today announced that the European Medicines Agency (EMA) has accepted for review the Marketing Authorization Application (MAA) of the investigational product, Cladribine Tablets for the treatment of relapsing-remitting multiple sclerosis (MS).


A Day on the Water

By: Maggie Harling

Tried something new today…sea kayaking! I was very nervous before I went. My husband has just retired and we have moved to coastal Maine. He made all the arrangements. We went with a friend of a friend who teaches this activity in Castine, Maine. He was very frank with her about our abilities( his – strong swimmer, no experience; mine – also strong swimmer, one time lake kayaking, profound balance issues, poor eyesight, left arm and leg weakness). As I said, I was very nervous about going, but I was really happy to be included and determined to give it a try.


The Hope of a Folding Chair

by Sónia Trejo

On a recent beautiful and sunny Southern California day, the Pasadena Rose Bowl was buzzing with thousands of people. Some were in wheelchairs, some used walkers or canes while others were athletes or your average pedestrian. Everyone, however, shared a heartfelt desire and commitment to raise awareness and funds for those they love who struggle with Multiple Sclerosis. It felt like much more than just an event to raise awareness and funds. This was a day to celebrate Hope and Love and the thousands of people in attendance amplified that feeling.