ALS Ice Bucket Challenge Progress
Spotlight on… Elyes Gabel
The right time for a storyteller to share his own tale
You may know Elyes Gabel as the brilliant computer mastermind, "Walter O'Brian", saving the United States against cyber threats in CBS’s Scorpion. Or you might recognize him as everyone’s favorite Dothraki warrior, "Rakharo", protecting his queen on HBO’s mega-hit, Game of Thrones. But, Elyes would like you to meet him today as a member of our ALS community; committed to raising awareness and support for people with ALS and their families served by The ALS Association Golden West Chapter.
“Many years ago my grandmother, Noreen Gurney, found out she had motor neuron disease (MND), which is how they refer to ALS in the UK,” said Elyes. “We were incredibly close and her diagnosis, life with the disease, and her death were some of the most impactful experiences of my life."
Noreen was born and raised in India, and came from a truly colonial heritage being of English, Indian, and Dutch descent. She was one of the last of her family to eventually immigrate to England. She married and had four children- one son and three daughters, one of which was Elyes’ mother, Irene.
It was when Elyes was 9 years old, that he and his family moved to Manchester and lived with Noreen, his grandmother, in her house for many years.
"During that time, my grand mum literally shared a room with me and my younger sister,” Elyes recalls. “Sometimes, she would have to break up the fights between us; when I was teasing my sister about the boogeyman and other things that big brothers say. She would run through all of our names, until she would get to the person who was in trouble."
"She was a great cook and made this amazing indian/burmese dish called Khow Suey, with chicken, noodles, coriander, and parsley. It was always bright yellow and would stain my clothes, but it was so delicious we didn’t care.
"My grandmother’s home was filled with laughter and lots of love."
It was when Elyes was about 12 years old, Noreen started having some difficulty walking, which progressed into a chronic limp.
"At first, we just thought it was her getting older- we actually would tease her about it. Over time, she experienced muscle atrophy, but was still able to walk. Later, there was an aggressive stage of the disease and she had to be in a wheelchair.
"Eventually, she moved into a nursing home to receive the care she needed, and I would visit with her there after school. Soon after that she couldn’t talk anymore."
"The disease felt like an enigma- like you didn’t know what you were fighting,” Elyes shared.
“When I was 16, I moved to London to start college, and left before the rest of the family came to join me. Before I left, I went to the hospital to visit with my Grandma. I remember her looking at me, very strongly, as I prepared to leave that night. I felt her communicating with me through that look.
"I went back to her house that night and, at about 2 am, we got the call that she had died."
"Even though the effects of ALS were so devastating, I always thought that my mom was one of the strongest people I have ever known," shared Elyes' mom, Irene.
"She is still the closest person to me who has died of a disease or illness. When the people you love pass away, you’re obviously touched by it. But I think the manner in which ALS affects people really can magnify those feelings."
Life moved forward for Elyes and he began to build a very successful international acting career, appearing in films such as Interstellar, A Most Violent Year, and World War Z; and on television shows such as The Borgias, Game of Thrones and Scorpion. Then in 2014, the global grassroots outpouring of support from the ALS Ice Bucket Challenge brought the fight against the disease back into Elyes’ life. Like many others, he decided to take the challenge himself.
He became involved with the Golden West Chapter by participating in the 2014 LA Walk to Defeat ALS. At the Walk, Elyes met many members of the ALS community including "Team Nanci" which was started by other actors who are friends with and clients of the publicist, Nanci Ryder, who was herself diagnosed with ALS a few weeks beforehand.
This was the first time that Elyes had ever participated in a Walk to Defeat ALS, and he was one of over 1000 people who walked in memory, in honor, or in support of the ALS community The experience was quite rewarding but stirred up many difficult memories from his past.
"It was an almost like an awakening,” shared Elyes. “I was nominated for the challenge and took it. But then, I had to take a step back as the experience of watching my grandmother’s battle with ALS rushed back to me."
"I had seen first-hand, up close and in person, her physical degeneration. I remembered how hard my family wanted to save her from this brutal disease. We even took a family trip to the Sanctuary and Grotto of Our Lady Of Lourdes in France, to have her drink the holy waters reported blessed by the Virgin Mary herself to try to help. It was difficult to remember those times”
Allowing himself to now fully grieve her loss has helped Elyes to gain a new perspective on the experience. “Even though 20 years has gone by since my grandma lost her fight with ALS, the memories and impact of that time period have been ever present in my life,” said Elyes.
“While time may heal some wounds, it also provides a foundation to support causes that have impacted me on a deep level, and it gives me a sense of determination. I realize now that sometimes people can’t stay and fight because their loss is so present."
Now, bringing greater awareness to ALS is one of Elyes’ top priorities and he is eager to make a difference. “I like to think that I’ve always had this intention to give back, but it really comes down to making it happen,” said Elyes. “Now that I am engaged in raising awareness about this horrible disease, I am able to dive deeper and educate myself about ALS itself, something I wasn’t able to do when my Grandma was still alive.”
In honor of Noreen, Elyes collaborated with the team at Larkshead to create a special embroidered patch, designed to help raise awareness of this devastating disease and the work of the Golden West Chapter. The ALS patches sell for $15 and all net proceeds benefit The ALS Association Golden West Chapter.
“From the moment we launched Larkshead, we've focused on wearing what matters.,’ said Tyler Magura, owner of Larkshead. “We hope to continue to bring awareness and help support a culture of caring for everyone affected by this disease.”
“Together we came up with the idea for this patch to support the Chapter’s mission, but also to raise greater awareness about its efforts to serve the ALS community and advance the search for effective treatments and cures,” said Elyes.
In addition, this year Elyes is taking it a step further and creating Team A-El-Yes for a Cure for the LA Walk to Defeat ALS
. “I get so much out of the experience of being around others in the ALS community, and in learning more and more about the disease. I’m very fortunate that most of my family is still alive, and I want my grandmother’s legacy to be for others to have the gift of time with their loved ones by helping to find effective treatments and cures for this disease.”
Even though there are still many unknowns in the understanding of ALS and in the search for effective treatments and cures, there has been much progress and many medical advances since Noreen’s battle with the disease.
Elyes comments, “I recognize that there are many people in the world who are committing their life to the care of others. This includes everyone from people who work in hospitals, hospices, care facilities, to a peson's friends, family, and loved ones.
"The more focus, energy, and ideas there are percolating around this issue, the better our chances are of finding a cure and creating a culture of community.”
The wraparound model of care, research, and advocacy that Elyes describes is at the heart of the mission and vision of The ALS Association Golden West Chapter. Everything we do supports the search for effective treatments and cures for ALS. We are honored and grateful to have Elyes Gabel share his memories of his beloved grandmother and join us to raise awareness in the fight against ALS.
Spotlight on… Elyes Gabel
The right time for a storyteller to share his own tale
You may know Elyes Gabel as the brilliant computer mastermind, "Walter O'Brian", saving the United States against cyber threats in CBS’s Scorpion. Or you might recognize him as everyone’s favorite Dothraki warrior, "Rakharo", protecting his queen on HBO’s mega-hit, Game of Thrones. But, Elyes would like you to meet him today as a member of our ALS community; committed to raising awareness and support for people with ALS and their families served by The ALS Association Golden West Chapter.
“Many years ago my grandmother, Noreen Gurney, found out she had motor neuron disease (MND), which is how they refer to ALS in the UK,” said Elyes. “We were incredibly close and her diagnosis, life with the disease, and her death were some of the most impactful experiences of my life."
Noreen was born and raised in India, and came from a truly colonial heritage being of English, Indian, and Dutch descent. She was one of the last of her family to eventually immigrate to England. She married and had four children- one son and three daughters, one of which was Elyes’ mother, Irene.
It was when Elyes was 9 years old, that he and his family moved to Manchester and lived with Noreen, his grandmother, in her house for many years.
"During that time, my grand mum literally shared a room with me and my younger sister,” Elyes recalls. “Sometimes, she would have to break up the fights between us; when I was teasing my sister about the boogeyman and other things that big brothers say. She would run through all of our names, until she would get to the person who was in trouble."
"She was a great cook and made this amazing indian/burmese dish called Khow Suey, with chicken, noodles, coriander, and parsley. It was always bright yellow and would stain my clothes, but it was so delicious we didn’t care.
"My grandmother’s home was filled with laughter and lots of love."
It was when Elyes was about 12 years old, Noreen started having some difficulty walking, which progressed into a chronic limp.
"At first, we just thought it was her getting older- we actually would tease her about it. Over time, she experienced muscle atrophy, but was still able to walk. Later, there was an aggressive stage of the disease and she had to be in a wheelchair.
"Eventually, she moved into a nursing home to receive the care she needed, and I would visit with her there after school. Soon after that she couldn’t talk anymore."
"The disease felt like an enigma- like you didn’t know what you were fighting,” Elyes shared.
“When I was 16, I moved to London to start college, and left before the rest of the family came to join me. Before I left, I went to the hospital to visit with my Grandma. I remember her looking at me, very strongly, as I prepared to leave that night. I felt her communicating with me through that look.
"I went back to her house that night and, at about 2 am, we got the call that she had died."
"Even though the effects of ALS were so devastating, I always thought that my mom was one of the strongest people I have ever known," shared Elyes' mom, Irene.
"She is still the closest person to me who has died of a disease or illness. When the people you love pass away, you’re obviously touched by it. But I think the manner in which ALS affects people really can magnify those feelings."
Life moved forward for Elyes and he began to build a very successful international acting career, appearing in films such as Interstellar, A Most Violent Year, and World War Z; and on television shows such as The Borgias, Game of Thrones and Scorpion. Then in 2014, the global grassroots outpouring of support from the ALS Ice Bucket Challenge brought the fight against the disease back into Elyes’ life. Like many others, he decided to take the challenge himself.
He became involved with the Golden West Chapter by participating in the 2014 LA Walk to Defeat ALS. At the Walk, Elyes met many members of the ALS community including "Team Nanci" which was started by other actors who are friends with and clients of the publicist, Nanci Ryder, who was herself diagnosed with ALS a few weeks beforehand.
This was the first time that Elyes had ever participated in a Walk to Defeat ALS, and he was one of over 1000 people who walked in memory, in honor, or in support of the ALS community The experience was quite rewarding but stirred up many difficult memories from his past.
"It was an almost like an awakening,” shared Elyes. “I was nominated for the challenge and took it. But then, I had to take a step back as the experience of watching my grandmother’s battle with ALS rushed back to me."
"I had seen first-hand, up close and in person, her physical degeneration. I remembered how hard my family wanted to save her from this brutal disease. We even took a family trip to the Sanctuary and Grotto of Our Lady Of Lourdes in France, to have her drink the holy waters reported blessed by the Virgin Mary herself to try to help. It was difficult to remember those times”
Allowing himself to now fully grieve her loss has helped Elyes to gain a new perspective on the experience. “Even though 20 years has gone by since my grandma lost her fight with ALS, the memories and impact of that time period have been ever present in my life,” said Elyes.
“While time may heal some wounds, it also provides a foundation to support causes that have impacted me on a deep level, and it gives me a sense of determination. I realize now that sometimes people can’t stay and fight because their loss is so present."
Now, bringing greater awareness to ALS is one of Elyes’ top priorities and he is eager to make a difference. “I like to think that I’ve always had this intention to give back, but it really comes down to making it happen,” said Elyes. “Now that I am engaged in raising awareness about this horrible disease, I am able to dive deeper and educate myself about ALS itself, something I wasn’t able to do when my Grandma was still alive.”
In honor of Noreen, Elyes collaborated with the team at Larkshead to create a special embroidered patch, designed to help raise awareness of this devastating disease and the work of the Golden West Chapter. The ALS patches sell for $15 and all net proceeds benefit The ALS Association Golden West Chapter.
“From the moment we launched Larkshead, we've focused on wearing what matters.,’ said Tyler Magura, owner of Larkshead. “We hope to continue to bring awareness and help support a culture of caring for everyone affected by this disease.”
“Together we came up with the idea for this patch to support the Chapter’s mission, but also to raise greater awareness about its efforts to serve the ALS community and advance the search for effective treatments and cures,” said Elyes.
In addition, this year Elyes is taking it a step further and creating Team A-El-Yes for a Cure for the LA Walk to Defeat ALS
. “I get so much out of the experience of being around others in the ALS community, and in learning more and more about the disease. I’m very fortunate that most of my family is still alive, and I want my grandmother’s legacy to be for others to have the gift of time with their loved ones by helping to find effective treatments and cures for this disease.”
Even though there are still many unknowns in the understanding of ALS and in the search for effective treatments and cures, there has been much progress and many medical advances since Noreen’s battle with the disease.
Elyes comments, “I recognize that there are many people in the world who are committing their life to the care of others. This includes everyone from people who work in hospitals, hospices, care facilities, to a peson's friends, family, and loved ones.
"The more focus, energy, and ideas there are percolating around this issue, the better our chances are of finding a cure and creating a culture of community.”
The wraparound model of care, research, and advocacy that Elyes describes is at the heart of the mission and vision of The ALS Association Golden West Chapter. Everything we do supports the search for effective treatments and cures for ALS. We are honored and grateful to have Elyes Gabel share his memories of his beloved grandmother and join us to raise awareness in the fight against ALS.
