Diagnosed with ALS in February 2011 with bulbar ALS, Mickey Johnston is a U.S. Air Force Veteran. He lives in Atlanta, Ga. with his wife and caregiver, Debbie. They have been married for 37 years. We are thrilled to share Mickey’s story of how he started the “Shy-Dye Love Ministry” that brightens the lives of people living with ALS all over the world.
Mike Deeley, a United States Navy veteran from Columbia, Pa., proudly served from 1988 to 1992 as an Aviation Electrician Third Class. In December 2016, he was diagnosed with ALS. Today, Mike generously shares his story about how he is determined to make a difference despite his diagnosis.
Now Mike mainly focuses on enjoying life – traveling and spending time with family and friends – while he is still physically able. He married the love of his life, Tima, this past July (see photo above). “She gets lost with all the stories, but is the person that is always beside me,” Mike said.
Larry Tyler from O’Fallon, Missouri, was a loving husband, father, grandfather, devoted friend, coach, and a successful businessman who traveled the world. Larry was diagnosed with ALS in 2014 and passed away just over 18 months later. Despite all the hurdles he faced, Larry managed to keep his sense of humor and faith, while this devastating disease ravaged his body, slowly paralyzing him and eventually robbing him of his life.
When Thelma “TAG” Martinez was diagnosed with ALS in 2013, she was 65 years old. Her caregiver and husband of 46 years, Henry, quickly became involved in the services provided by their local chapter.
“On day one of this diagnosis, there is no data dump which tells the patient, ‘Okay, here is everything you need to get through the next few years,” Henry said.
The ALS Association wishes you and your family a very safe and spooky Halloween!
This festive season is another reminder that ALS takes away the ability to do so many things that most of us may take for granted. With this devastating disease, even fun activities like bobbing for apples or going trick-or-treating with kids are made extremely challenging or simply not possible.
Continue reading Creative Ways to Support The ALS Association
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.
From donations raised through the ALS Ice Bucket Challenge, The ALS Association, in partnership with the Greater New York Chapter, made a $2.5 million commitment to the Center for Genomics of Neurodegenerative Disease (CGND) at the New York Genome Center (NYGC). This commitment, combined with a matching gift from the Tow Foundation, was one of the driving forces supporting the NYGC’s ALS research program in 2014. Three years later, the NYGC’s CGND has made enormous headway in the ALS genetics space and has become one of the major leaders in the field. Their accomplishments are broad in that they have sequenced and analyzed hundreds of ALS DNA samples, while pairing this information with patient clinical history and more. We are pleased to note that Tom Maniatis, PhD, one of the NYGC’s original founders and renowned ALS researcher, was recently appointed Scientific Director and Chief Executive Officer of the NYGC.