Home Infusion and Coverage Information for People Living with ALS

The Federal Drug Administration (FDA) recently approved a new drug to treat ALS, which uses intravenous (IV) infusion for administration. IV therapy can be administered in multiple sites of care: your doctor’s office, a clinic, a hospital, or your own home. Whether you receive treatment will be a decision based on clinical input from your physician, your insurance coverage, and personal preference. The following information focuses on home infusion therapy: the basics, the team members involved, the supplies required for home infusion, and where to get them; and finally, coverage options for home infusion therapy.

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Helpful Tips for Traveling With ALS

In general, people with disabilities are traveling more than ever, including those living with ALS. In response, the travel industry is paying greater attention to their special needs by providing more services and accommodations. The amount of information is increasing and is more readily available from disability organizations and transportation company websites. In preparation for the upcoming fall travel season, we held a webinar “Traveling with ALS.” Read more for some great tips on how best travel with ALS and to help people with ALS and their companions anticipate some of the challenges associated with accessible travel.

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Clinical Trial: ALS Association and ALS Finding a Cure® Supported Phase II RNS60 Trial is Now Enrolling

The clinical trial to test RNS60, a new compound for the treatment of ALS, which was supported in part from a $1.0 million grant through the ALS ACT initiative funded by The ALS Association and ALS Finding A Cure®, is now actively enrolling. This randomized placebo-controlled phase II study is being run by the IRCCS Mario Negri Institute for Pharmacological Research in Milan and the ALS Center of the Maggiore University Hospital in Novara Italy. We are happy to report that the first patient was dosed in mid-July 2017.

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REPORT FROM HOUSTON: Home Visits

Thomas Todd is one of the hundreds of people living with ALS who was impacted by Hurricane Harvey. As Harvey approached, Thomas was able to safely ride out the storm with friends, but the hurricane had a devastating impact on his house. Harvey flooded his house with nearly two feet of water.

As part of our outreach efforts, The ALS Association Texas Chapter contacted Thomas to assess his needs. When we met up with Thomas he was waiting outside his house, unable to enter because the waters shifted the ramp into his house.

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REPORT FROM HOUSTON: Delivering Critical Supplies to Those in Need

Over the weekend, we spent a few days with Tanner Hockensmith, Executive Director of The ALS Association Texas Chapter, as he and his team were setting up their supply staging facility in Houston and visiting families in need. At the time, they had reached out to all of the people with ALS in the areas affected by Harvey, and managed to connect with most of them.

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Every Advocate Adds Up: Meet Larry

All month, we are featuring stories of individuals who are having an impact in the fight against ALS.

Meet Larry Harms. Larry is a father, grandfather, decorated Air Force veteran and tireless ALS advocate from Colorado. When you meet Larry, his wonderful sense of humor, optimism and love for life is immediately apparent. We recently sat down with Larry and learned how determined he is to live life to the fullest despite his diagnosis.

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Every Mother: Meet Suzy

All month, we are featuring stories of individuals who are having an impact in the fight against ALS.

Meet Suzy Shealy from Columbia, S.C. Suzy is a wife, Gold Star mother (son Army Sgt. Joseph Derrick), grandmother, sister, person living with ALS and a tireless ALS advocate. We recently sat down with Suzy to get to know her and learn how ALS impacts her life.

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