Family Caregivers
The ALS Association Greater New York Chapter | The Official Blog
by ALS Blogger
2M ago
Jabari and his father, Rosevelt It is a very tricky business being a caregiver to an ALS patient; you must manage your time wisely, keep an eye and mind on signs/symptoms, be forward-thinking, yet still present and try not to get too high or too low. Quite frankly, it’s a very emotionally and mentally challenging experience but an extremely rewarding one because you’re doing it from the heart. In March of 2021, my dad started experiencing some speech-slurring issues and was concerned about his health as were the rest of our family. In May of 2022, he was officially diagnosed. It came as a shoc ..read more
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Walking with a Caregiver – Pat Galvin Bloom
The ALS Association Greater New York Chapter | The Official Blog
by ALS Blogger
3M ago
February 13, 2020, is the date our world turned upside down. After months of visits to doctors and specialists, MRIs and other tests, and a neurologist who said it was not ALS, my previously healthy, active, athletic husband and I heard the devastating news, Dave had ALS. Within weeks, a second opinion from a well-known expert in the field confirmed this diagnosis. As two retired teachers who knew little about ALS, we set out to educate ourselves, find the best experts to help Dave, and get him into a research study. One of the first numbers given to us was The ALS Association Greater New York ..read more
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TEAM ALS – NYC MARATHON
The ALS Association Greater New York Chapter | The Official Blog
by ALS Blogger
3M ago
Photo: Jeffrey with his grandfather and brother, Brian in 2014. Running is in my family. We have a tradition of participating in the local Thanksgiving Day race every year that was started by my grandpa, Robert Denny, who we lost to ALS in 2014. But the New York City Marathon has always had a special place in my heart. My father and grandfather both ran it years ago, well before I ever thought of going out for a 26.2-mile race. Once I got to experience it in person, cheering on my dad in 2006, I remembered thinking that someday I will be back to carry on the Denny tradition of running the NYC ..read more
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Giving Hope
The ALS Association Greater New York Chapter | The Official Blog
by ALS Blogger
10M ago
Katie & Janet This May, as we recognize ALS Awareness Month, let us honor those who give us hope. Our loved ones, caregivers, friends, neighbors, family, nurses, social workers, or doctors. The people in our lives and in our hearts who give us the strength to embrace another day. Who gives you hope? For Janet De Vivo, who so bravely battled ALS, and her dear friend & caregiver Katie Gallo, it was the social workers, nurses, and extensive services provided by The ALS Association Greater New York Chapter that gave them hope throughout unimaginably difficult times. “During a very scary ti ..read more
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New Hobbies & Joys of Expression
The ALS Association Greater New York Chapter | The Official Blog
by ALS Blogger
11M ago
Gene and his wife, Meredith who is living with ALS, have been spending the winter in Florida. While there, they engaged a local artist to teach Meredith watercolor painting. It is not surprising that Meredith is very good, having been in graphic design for 40 years! “I think she has intuitive color skills, even a bit better than the teacher,” said Gene. Judy, the instructor, has also been an absolute dream. Gene and Meredith provided us the picture of the rainbow saying, “They are often amazed daily by their environment and the spiritual feeling it can often provide.”  They also remarked ..read more
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Loving Each Other Even More
The ALS Association Greater New York Chapter | The Official Blog
by ALS Blogger
1y ago
Vera & Phillip Pellerito Philip Pellerito and Venera (Vera) met in high school when he first arrived in New York from Italy. He said the first thing he loved about Vera was her beautiful smile. They were in the same class and became friends right away. Vera invited Philip to her “Sweet 16” birthday party and shortly after, he found the courage to ask her out. That was February 15, 1972, and as he said, “it’s been history ever since.” They got married on June 26, 1977, and had two wonderful children, (Antonio and Rosario), and now have a beautiful granddaughter, Isla. Like all relationships ..read more
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Gluck Family Matching Gift Challenge
The ALS Association Greater New York Chapter | The Official Blog
by ALS Blogger
1y ago
We are extremely honored to announce a matching gift challenge of up to $200,000, made possible by the Gluck Family Foundation. They have generously agreed to match every donation, dollar-for-dollar, through the end of this year. Together we can ensure that your gift will make a significant difference for all families in our ALS community by doubling the impact of every gift received. The Gluck Family Foundation, started by Laurence and Sandra, has been a leader in the philanthropic community since 2014, donating to over 20 nonprofit organizations, the majority of which are in New York City ..read more
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Caregiving is a Full-time Job
The ALS Association Greater New York Chapter | The Official Blog
by ALS Blogger
1y ago
In 2018, Randie was working two jobs, one as a personal chef, and the other as a chef for a New Jersey hospital system. However, after experiencing some slurred speech and weakness in his right hand he eventually was diagnosed with ALS. His wife, and now fulltime caregiver, Charnelle Bain-Lynn, was laid off in August of 2019, which she said was a blessing in disguise because she had been burning the candle at two ends. One thing she wanted people to know about those living with ALS is that they, “still have a voice. ALS may have robbed some of our pALS (people with ALS) of their speech, but t ..read more
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A Matter of the Heart
The ALS Association Greater New York Chapter | The Official Blog
by ALS Blogger
1y ago
It was a sunny Saturday morning when my dad said to me “Go get ready. We are going to pick up mommy and the baby.”  That was the day I met my brother Todd whom I would be enamored with forevermore.  Tanya & Todd before his diagnosis. Todd and I are siblings cut from a similar cloth of personality, values, loyalty, love for family, and for each other. We were always close as siblings and somewhere along the line, we became the best of friends and confidants.  The diagnosis of ALS at the age of 37, just months after the birth of his first and only son, was devastating for him ..read more
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Whatever It Takes
The ALS Association Greater New York Chapter | The Official Blog
by ALS Blogger
1y ago
As is true for so many with ALS, the symptoms appeared out of nowhere. Kerry Falzone’s father, Andy, an avid mountain bike rider, self-taught guitar player, and long-time carpenter was diagnosed with Bulbar Onset ALS at age 62 in January 2021. Kerry, a marketing expert with a husband and two small children, knew she could not idly stand by and watch this disease devastate her father without taking action. She immediately started researching the disease learning all she could and became an advocate in the fight to end ALS. But, that wasn’t enough. She jumped at the chance to raise funds for th ..read more
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