Recent Quest Articles
Game On
Participating in a clinical trial often means meeting some stringent requirements. One common requirement is the six-minute walk test, which measures the distance walked in six minutes and which may be used to help determine whether a drug is having an effect. This requirement can be a challenge for some individuals with neuromuscular diseases.
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Partners in Progress
Since 2006, Casey’s General Stores have supported MDA through MDA Muscle Team and the MDA Summer Camp Pinup Campaign, which lets shoppers purchase a $1 or $5 pinup (which includes a 7UP coupon) to display in the store. Over the past 10 years, Casey’s stores have raised more than $8 million with this campaign, including $1.5 million in 2016 alone.
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Support System
When Cindi Reamer, a 58-year-old auditor and coder with limb-girdle muscular dystrophy (LGMD) was a child in Fort Wayne, Ind., she told her orthopedist that she wanted to work for him one day. At age 20, she did just that. Steven Glock, M.D., hired her as a telephone switchboard operator, and she has been working in his practice ever since, moving from the switchboard into coding.
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Helping Hands
An MDA partner since 2001, Lowe’s takes great pride in improving the communities it serves. To date, Lowe’s and its loyal customers have raised more than $63 million to support MDA’s mission. Lowe’s also supports MDA by encouraging their employees to volunteer throughout the year and to join together in select improvement projects. This year’s projects included helping to construct new decks and ramps for the MDA Summer Camp at Camp Calvin Crest in Nebraska.
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Carry On
For Ed Walsh, who has been a U.S. Postal Service letter carrier for 23 years, getting involved with MDA came naturally. Walsh is a member of the National Association of Letter Carriers (NALC) Branch 358 in New York. NALC was one of MDA’s first national sponsors, originally partnering with MDA in 1952. Beyond that official partnership, Walsh and his fellow branch members have found personal connections to MDA.
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Flying High with Kippy
When Christine “Kippy” Hoene, a 57-year-old acrobat and entrepreneur with facioscapulohumeral muscular dystrophy (FSHD), first opened her SaltAer circus school in Jacksonville, Fla., earlier this year, it represented a culmination of her passions. At age 35, Hoene decided she wanted to learn a new skill every year, and after seeing Cirque du Soleil perform in Las Vegas, she set out to learn acrobatics.
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Surviving and Thriving in College
College is a blast, but it can come with a pile of challenges the size of a mountain. Just look at the hundreds of articles there are advising students on how to conquer stress, manage time and deal with that one professor who may as well have been stripped from an ‘80s movie. College can be the best — and the most draining — time in a person’s life.
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Running the Country
MDA Team Momentum participates in a dozen (and counting) marathon and half-marathon events every year. These events feature hundreds of runners and walkers who raise money for MDA, and they take place all across the United States, from San Diego to Chicago to Boston.Here are some of the groups of runners who have made an impact fundraising for and raising awareness of MDA.
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Progress Now Summer 2017
The U.S. Food and Drug Administration (FDA) in May approved edaravone (brand name Radicava) to treat ALS. Under development by Mitsubishi Tanabe Pharma America, Radicava is the first drug to be granted FDA approval to treat ALS in the United States in more than 20 years.Radicava is thought to work by relieving the effects of oxidative stress, which has been suspected to play a role in the death of nerve cells called motor neurons in people with ALS. (Oxidative stress is an imbalance between the production of free radicals and the ability of the body to counteract or detoxify their harmful effects with antioxidants.) Targeting this pathway could potentially preserve motor neuron health, which could in turn keep muscles functional for a longer period of time.
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In Case of Emergency
Emergency situations present real challenges for individuals affected by neuromuscular diseases. For example, in February, when the Oroville Dam threatened to fail in California, downstream residents were given just one hour to leave their homes. Local news reported that a resident with a disability was left behind for hours due to lack of accessible transportation.
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