ALS Ice Bucket Challenge Progress
A wedding is one of life’s significant rites of passage. It is a public moment of transition and expression of love, and is symbolic of major changes for both the individuals and their families. They are a milestone of the passage of time, and selecting the date for the event itself can be challenging. For Sara Nachlis, and her fiance Brad Vassar, the choice was clear.
“We are getting married on Saturday, October 23, on what would have been the 44th wedding anniversary of my parents,” Sara shared. “It is also the same day of the Golden West Chapter’s Walk to Defeat ALS.”
Marvin and Gayle Nachlis were married for 35 years until his death in 2013, at the age of 63, after a two year battle with ALS. They would often say that they were more in love every day. Family meant the world to them, and they loved spending time with their two children, Alex and Sara. They both had significant and tenured professional careers - with Gayle working as a talent agent for William Morris for 30 years, and Marvin practiced law for 25 years.
“Growing up, my dad was completely devoted to my mom and to us, and was the epitome of an involved parent.,” said Sara. “He coached my soccer teams and my brother's basketball teams. I would walk to his law office after school, while he finished his work, and he would try to help with my homework. He was there to cheer at every drama performance, and always available for a hug.”
Then, both Gayle and Marvin had priority changes in their lives and decided to change careers. Marvin challenged himself to start a new role at David Starr Jordan High School, where he taught math and coached their mock trial team and girls basketball for 12 years. Gayle became the executive director of Women In Film (WIF), a nonprofit organization that empowers, promotes, and mentors women in entertainment and media.
“I had just started high school when my parents changed their work,” said Sara. “It was a big transition for both, especially for my dad. But they had such an extraordinary partnership and were an incredible support for each other. In hindsight, I realize that it was good for me to see that people have the ability to change their life’s narrative. It was a good time to have more time with him. He always had advice for serious situations, but was quick to make waffles and ice cream for dinner before things got too heavy.”
“If I'm certain of one thing in my life, it's that my father loved me. He made sure that I knew that in my core and that I heard it every day. He was generous with his time and attention. He was always willing to help or search for a solution. Quick to care and just the best man in the world. To put it mildly, I adored the man.”
It was in February 2011 when Marvin started expecting some strange and unexplainable symptoms, including excessive lip-smacking, difficulty swallowing, and had trouble lifting his right arm. He was an avid golfer, who played every weekend, but suddenly couldn't swing any more. Tests were run, but the diagnosis was hard to find. At first, ALS was suspected, and the family was devastated, but it was quickly replaced with a diagnosis of myasthenia gravis, which gave the family such hope. Then, as Marvin’s symptoms progressed, it became painfully clear that this was something more. In September 2012, he was re-diagnosed with ALS, and his condition began to rapidly deteriorate. He was 61.
“My mom was laser focused and did what she had to do to take care of my dad,” said Sara. “Whether it was learning how to feed him, taking on home modification projects, arranging for doctors appointments, and registering for free services from the Golden West Chapter. Even though we had in-home care, my mom was always there.”
At the time Alex was living at home and preparing to go to graduate school at Johns Hopkins University on the east coast, Sara was working in television research in Los Angeles, and living about 10 minutes away from where her parents lived, and would come to help on the weekends.
“Watching my father go from this larger-than-life figure, to someone made passive by his body, was so hard,” shared Sara. “I still struggle with guilt over not being there as often as I think I should have been.”
“Beyond being an amazing father, my dad was an extraordinary husband and was so in love with my mom,” shared Sara. “I was worried I'd never find someone who loved me in the same way. Thankfully, I did.”
It was an unexpected twist of fate that, during this difficult time for their family, Sara would come to meet someone who would become the love of her life. “My dad is the standard by which I judge all people. So, when I first started dating Brad, I was drawn to many of the similarities between them. They both go out of their way to help anyone.”
About four months after they started dating, Sara brought Brad to meet her parents. “My dad was confined to his wheelchair at this point. His speech was pretty bad and he really couldn't be understood consistently by anyone outside our family,” she said. “But he was able to listen to Brad talk about himself, and watch the two of us together. As we were leaving, my dad whispered in my ear, ‘I like him.’ This meant a lot to both of us”
“My dad kept a journal during this time and now, as I am approaching my own marriage, there was one particular entry that means a lot to me.”
“Yesterday, I had a substitute caregiver.… Joshua was obviously a very last minute replacement. He had not worked as a caregiver in months … and was not licensed to feed me or give me medication. Thus, it became apparent that if I was to eat and be medicated, Gayle needed to stay home and work at home. Throughout the day, Gayle worked and did her normal activities taking care of me. It was not an unusual day, just the normal problems associated with taking care of a person disabled and incapacitated as I am. At the end of Joshua’s day, Gayle signed his papers indicating the hours he had worked, and he left."
"A few minutes later, there was a knock on the door. It was Joshua. He apologized as he entered. We had thought he might have forgotten something. Instead he said he came back to tell us that it was a privilege to be with us. He described the care and love that he saw Gayle give to me as she took care of me, and said it inspired him. …. He asked if he could visit when he’s in the area. The most important thing he wanted to convey was how much Gayle inspired him to help and love others. He said he wanted her to know."
"It was such a wonderful, surprising event…..Gayle is inspiring to me. Unless you have been in this situation, it is not possible to imagine what she does each day with love.”
Marvin’s death in 2013 was very difficult for everyone in the family. But they all tried to take the experience and redirect their grief to help others. Sara wrote an article for Modern Loss. Alex decided to become a nurse practitioner, and decided, along with his fiancé Meredith, to request donations to the Golden West Chapter in lieu of wedding gifts. A donation was made to Women in Film in memory of Marvin and in honor of Gayle’s service as Executive Director, to support the creation of a special PSA to raise awareness and support for the ALS community and the mission of the Golden West Chapter. Sara formed Team Nachlis for the Golden West Chapter’s Walk to Defeat ALS.
“The year after his death was the Ice Bucket Challenge,” said Sara. “I created a special series of themed ice bucket challenges as we reached certain levels of fundraising. With Brad’s help, I had ice water, flour and feathers, ice cream, various spirits, and even slime dumped on my head to raise awareness and support for the ALS community.”
Since 2014, Team Nachlis has been a dedicated part of the Walk to Defeat ALS community and is a part of the Golden West Chapter’s Never Give Up Club. “Being a part of the Walk is a way to feel like I'm doing something to make sure no one else loses their hero,” said Sara.
In the years following her father’s death, Sara and Brad moved in together, and started to build a life.
“When my dad was sick, all we could really do was watch a ton of TV together,” said Sara. “He was a walking sports almanac and, ever since I was little, we would always watch the games together. After he died, it was about a year before I could sit through a sporting event. But over time I got back into it and was even able to make Brad a Dodger fan.”
In 2020, after eight years together, Brad proposed to Sara during a camping trip at the Grand Canyon. “Brad and I have been together a long time and our house is already a home. So, for our wedding, we have told our guests that the best gift they can give us is to make a donation to the Golden West Chapter in honor of my dad.”
“ALS is a thief of more than life, and it is hard to think about all of the things that I missed and will miss,” said Sara. “Ever since I was a little girl at every wedding, bar mitzvah, or event with dancing, my dad would ask me to dance and say it was practice for my wedding. Because of ALS, we don't get to have that dance. If there was a baby around, my dad was the guy making faces and doing Donald Duck impressions to get a smile. Because of ALS, my niece Rosalind and my future children don't get to know their grandfather.”
“But, my dad wanted me to be happy. He wanted me to be productive, strong and silly. He wanted joy for me….I try to focus on memories of him showing me just how he wanted me to live. I think about him volunteering to coach my youth soccer teams, year after year. I think about him attempting to help me understand my math homework. And I think about him apologizing to me that he was going to die, because he knew it would be hard on me.”
“I’m still not sure how life will be going forward, but my dad had confidence I’d figure my way through it; in that, I take comfort.”
A wedding is one of life’s significant rites of passage. It is a public moment of transition and expression of love, and is symbolic of major changes for both the individuals and their families. They are a milestone of the passage of time, and selecting the date for the event itself can be challenging. For Sara Nachlis, and her fiance Brad Vassar, the choice was clear.
“We are getting married on Saturday, October 23, on what would have been the 44th wedding anniversary of my parents,” Sara shared. “It is also the same day of the Golden West Chapter’s Walk to Defeat ALS.”
Marvin and Gayle Nachlis were married for 35 years until his death in 2013, at the age of 63, after a two year battle with ALS. They would often say that they were more in love every day. Family meant the world to them, and they loved spending time with their two children, Alex and Sara. They both had significant and tenured professional careers - with Gayle working as a talent agent for William Morris for 30 years, and Marvin practiced law for 25 years.
“Growing up, my dad was completely devoted to my mom and to us, and was the epitome of an involved parent.,” said Sara. “He coached my soccer teams and my brother's basketball teams. I would walk to his law office after school, while he finished his work, and he would try to help with my homework. He was there to cheer at every drama performance, and always available for a hug.”
Then, both Gayle and Marvin had priority changes in their lives and decided to change careers. Marvin challenged himself to start a new role at David Starr Jordan High School, where he taught math and coached their mock trial team and girls basketball for 12 years. Gayle became the executive director of Women In Film (WIF), a nonprofit organization that empowers, promotes, and mentors women in entertainment and media.
“I had just started high school when my parents changed their work,” said Sara. “It was a big transition for both, especially for my dad. But they had such an extraordinary partnership and were an incredible support for each other. In hindsight, I realize that it was good for me to see that people have the ability to change their life’s narrative. It was a good time to have more time with him. He always had advice for serious situations, but was quick to make waffles and ice cream for dinner before things got too heavy.”
“If I'm certain of one thing in my life, it's that my father loved me. He made sure that I knew that in my core and that I heard it every day. He was generous with his time and attention. He was always willing to help or search for a solution. Quick to care and just the best man in the world. To put it mildly, I adored the man.”
It was in February 2011 when Marvin started expecting some strange and unexplainable symptoms, including excessive lip-smacking, difficulty swallowing, and had trouble lifting his right arm. He was an avid golfer, who played every weekend, but suddenly couldn't swing any more. Tests were run, but the diagnosis was hard to find. At first, ALS was suspected, and the family was devastated, but it was quickly replaced with a diagnosis of myasthenia gravis, which gave the family such hope. Then, as Marvin’s symptoms progressed, it became painfully clear that this was something more. In September 2012, he was re-diagnosed with ALS, and his condition began to rapidly deteriorate. He was 61.
“My mom was laser focused and did what she had to do to take care of my dad,” said Sara. “Whether it was learning how to feed him, taking on home modification projects, arranging for doctors appointments, and registering for free services from the Golden West Chapter. Even though we had in-home care, my mom was always there.”
At the time Alex was living at home and preparing to go to graduate school at Johns Hopkins University on the east coast, Sara was working in television research in Los Angeles, and living about 10 minutes away from where her parents lived, and would come to help on the weekends.
“Watching my father go from this larger-than-life figure, to someone made passive by his body, was so hard,” shared Sara. “I still struggle with guilt over not being there as often as I think I should have been.”
“Beyond being an amazing father, my dad was an extraordinary husband and was so in love with my mom,” shared Sara. “I was worried I'd never find someone who loved me in the same way. Thankfully, I did.”
It was an unexpected twist of fate that, during this difficult time for their family, Sara would come to meet someone who would become the love of her life. “My dad is the standard by which I judge all people. So, when I first started dating Brad, I was drawn to many of the similarities between them. They both go out of their way to help anyone.”
About four months after they started dating, Sara brought Brad to meet her parents. “My dad was confined to his wheelchair at this point. His speech was pretty bad and he really couldn't be understood consistently by anyone outside our family,” she said. “But he was able to listen to Brad talk about himself, and watch the two of us together. As we were leaving, my dad whispered in my ear, ‘I like him.’ This meant a lot to both of us”
“My dad kept a journal during this time and now, as I am approaching my own marriage, there was one particular entry that means a lot to me.”
“Yesterday, I had a substitute caregiver.… Joshua was obviously a very last minute replacement. He had not worked as a caregiver in months … and was not licensed to feed me or give me medication. Thus, it became apparent that if I was to eat and be medicated, Gayle needed to stay home and work at home. Throughout the day, Gayle worked and did her normal activities taking care of me. It was not an unusual day, just the normal problems associated with taking care of a person disabled and incapacitated as I am. At the end of Joshua’s day, Gayle signed his papers indicating the hours he had worked, and he left."
"A few minutes later, there was a knock on the door. It was Joshua. He apologized as he entered. We had thought he might have forgotten something. Instead he said he came back to tell us that it was a privilege to be with us. He described the care and love that he saw Gayle give to me as she took care of me, and said it inspired him. …. He asked if he could visit when he’s in the area. The most important thing he wanted to convey was how much Gayle inspired him to help and love others. He said he wanted her to know."
"It was such a wonderful, surprising event…..Gayle is inspiring to me. Unless you have been in this situation, it is not possible to imagine what she does each day with love.”
Marvin’s death in 2013 was very difficult for everyone in the family. But they all tried to take the experience and redirect their grief to help others. Sara wrote an article for Modern Loss. Alex decided to become a nurse practitioner, and decided, along with his fiancé Meredith, to request donations to the Golden West Chapter in lieu of wedding gifts. A donation was made to Women in Film in memory of Marvin and in honor of Gayle’s service as Executive Director, to support the creation of a special PSA to raise awareness and support for the ALS community and the mission of the Golden West Chapter. Sara formed Team Nachlis for the Golden West Chapter’s Walk to Defeat ALS.
“The year after his death was the Ice Bucket Challenge,” said Sara. “I created a special series of themed ice bucket challenges as we reached certain levels of fundraising. With Brad’s help, I had ice water, flour and feathers, ice cream, various spirits, and even slime dumped on my head to raise awareness and support for the ALS community.”
Since 2014, Team Nachlis has been a dedicated part of the Walk to Defeat ALS community and is a part of the Golden West Chapter’s Never Give Up Club. “Being a part of the Walk is a way to feel like I'm doing something to make sure no one else loses their hero,” said Sara.
In the years following her father’s death, Sara and Brad moved in together, and started to build a life.
“When my dad was sick, all we could really do was watch a ton of TV together,” said Sara. “He was a walking sports almanac and, ever since I was little, we would always watch the games together. After he died, it was about a year before I could sit through a sporting event. But over time I got back into it and was even able to make Brad a Dodger fan.”
In 2020, after eight years together, Brad proposed to Sara during a camping trip at the Grand Canyon. “Brad and I have been together a long time and our house is already a home. So, for our wedding, we have told our guests that the best gift they can give us is to make a donation to the Golden West Chapter in honor of my dad.”
“ALS is a thief of more than life, and it is hard to think about all of the things that I missed and will miss,” said Sara. “Ever since I was a little girl at every wedding, bar mitzvah, or event with dancing, my dad would ask me to dance and say it was practice for my wedding. Because of ALS, we don't get to have that dance. If there was a baby around, my dad was the guy making faces and doing Donald Duck impressions to get a smile. Because of ALS, my niece Rosalind and my future children don't get to know their grandfather.”
“But, my dad wanted me to be happy. He wanted me to be productive, strong and silly. He wanted joy for me….I try to focus on memories of him showing me just how he wanted me to live. I think about him volunteering to coach my youth soccer teams, year after year. I think about him attempting to help me understand my math homework. And I think about him apologizing to me that he was going to die, because he knew it would be hard on me.”
“I’m still not sure how life will be going forward, but my dad had confidence I’d figure my way through it; in that, I take comfort.”
