ALS Ice Bucket Challenge Progress
“Like the morning sun you come and like the wind you go.”
- from “Uncle John’s Band” by the Grateful Dead.
Throughout his life, Russell “Rusty” Selix has been told by many that he is the most optimistic person they have ever met.
As a professional advocate in California for over 30 years, Rusty worked tirelessly on important issues on behalf of people in the mental health community. His extensive knowledge of healthcare legislation has put him at the center of some of the most important public policy milestones in patient care advocacy.
“He is an amazing advocate,” shared Donna Campbell, Deputy Legislative Affairs Secretary at the Office of Governor Edmund G. Brown Jr. “He is tenacious, smart and easy to work with - a consummate policy professional.”
As the Executive Director for the California Access Coalition and of the Mental Health Association in California, Rusty has been a leading expert in mental health and state finance, as well as state and local government policy. He also served as the Executive Director/Director of Policy and Advocacy for the California Council of Community Behavioral Health Agencies, a statewide association of non-profit agencies dedicated to providing mental health and substance use disorder programs and services.
“Rusty is creative, personable, smart, and someone who constantly questioned the status quo.” said Diane Van Maren, Former Consultant to Pro Tempore Steinberg, and the Senate Budget and Fiscal Review Committee. “We worked closely together... Rusty believed in making positive change happen and he got results.”
One of Rusty’s most significant career triumphs was the Proposition 63 Campaign. Rusty was the leader and original co-author, along with Mayor of Sacramento Darrell Steinberg, of this California ballot measure, which was passed into law in 2004. It generates nearly $2 billion annually which was invested in transforming California’s public mental health systems.
Rusty Selix challenged us to increase our understanding of the toll mental illness has on people’s lives, their families, and society,“ saiid California State Senator Jim Beall. “This resulted in less stigma, and better services leading to healthier lives for people with mental illnesses. Without him, California’s mental health care system would not be what it is today. There is no stronger advocate for people with mental illnesses than Rusty Selix, and I thank him for his hard work, dedication, and humanity. He has made California a better place.
When he wasn’t advocating in Sacramento, the thing Rusty loved to do most was hike. His favorite memories include climbing over 14,000 ft to the summit of Mt. Shasta - a journey he made four times. “It was like being on top of the world.”
He has always loved music and going to concerts, especially his favorite band, The Grateful Dead. An avid golfer, Rusty says that a person’s character is best revealed on the golf course. Rusty was also well known at the state capitol for being one of the biggest fans of the San Francisco Giants and for being an expert bridge player.
Then, Rusty was diagnosed with ALS in 2017.
He began attending the multidisciplinary ALS team clinic at the ALS Treatment and Research Center at UCSF and also the Forbes Norris Center at California Pacific Medical Center. When he learned this care was funded by the philanthropic efforts of The ALS Association Golden West Chapter, and not by insurance or the state, he immediately called to express his personal thanks.
Rusty then connected with Fred Fisher, President and CEO of the Chapter, and Fred Noteware, of Noteware and Rose Government Relations, who serves as a lobbyist for the Golden West Chapter. They met and asked him to apply his deep expertise on behalf of the ALS community to help improve care services for people with ALS in California. Rusty told them, “This is right up my alley.”
“I had known Rusty for over 40 years here since we both got our start at the capitol around the same time,” shared Fred Noteware. “Over the years, he was someone that I had looked up to for a variety of reasons, in part because of he is such an expert on all things related to the mental health community.”
"There are certain people at the capitol who rise to the occasion, have respect from both sides of the aisle on policy matters, and that is Rusty Selix,” said Noteware. ”He is a true gentleman, who always has a smile and is a pleasure to be around.”
On April 30, 2018, Rusty and Fred Fisher testified in Sacramento requesting support for the Golden West Chapter's wraparound model of care, which combines medical, community and home-based services and support and which is proven to help people with ALS live better and longer with the disease. It is also designed to accelerate the search for effective treatments and cures for ALS. (You can watch their full testimony here, starting at 1:50:46)
“One of the things that Rusty is an expert in is navigating the state budget process, how the state decides where and how it will spend its money,” said Noteware. “This is very different from the legislative process, or how a bill becomes a law."
On June 27, 2018, Governor Brown signed budget bill SB 840 in support of this model of care for California's ALS community, declaring the bill a “milestone.” It was important recognition of the diverse and ongoing needs for people living with ALS and their families, acknowledgement of the work of The ALS Association, and an unprecedented commitment of state government funding to support care for families facing this devastating disease.
“This funding is unprecedented here in California and these resources will directly benefit the care and treatment of people with ALS,” said Fred Fisher. "We can’t thank Rusty for his many insights and leadership in this process.”
“Some people want it to happen, Some wish it would happen. And others, make it happen,” Kassy Perry, President & CEO of Perry Communications group proclaims when asked to describe Rusty. “Rusty is a true champion in every sense of the word and we all were fortunate to have him shine so brightly for decades.”
Kassy continues, “Congresswoman Doris Matsui wrote into the Congressional Record that she honored Rusty for not just his many accomplishments, but for the spirit and manner in which he achieved them. The ALS community will now benefit from his brilliance and passion for access to care, and support for research into the disease. I can think of no one better equipped to affect change than Rusty Selix.”
Even with his numerous professional accomplishments, Rusty has made the time to create a fulfilling and gratifying personal life. “My parents gave me the skill set and education to accomplish anything I set up to do. I grew up in a loving and peaceful household with a vast extended family with whom I am very close and I have wonderful friends.” Rusty shared.
“Obviously it’s more difficult now, but somehow I remained strong,” says Rusty. “I have hope and I always focus on the positive. I am lucky to always have that in me. I think it’s a great way to go through life.”
“My wife, Nancy, is more than the love of my life. She is an amazing person. I never thought I would find someone to love me and make me enjoy life the way that she has.”
Rusty also feels blessed to have three amazing children. His daughter, Amy and her fiancé Ryan are both teachers. His son Shae is in tech and hopes to use his skills sets to pursue his passion and environmental issues, while enjoying life with his partner Jason. His youngest, Sydney is following in his footsteps. She has graduated from Northwestern, Rusty’s alma mater, and is now studying law to eventually pursue a career in public policy.
“I hope I have passed onto my children the ability to always see the hope and possibilities in everything,” Rusty shares. “Even after my diagnosis I enjoy my life. I wake up every morning happy. Sure, I have bad moments but I still have hope that something will come along and that I'm going to beat this disease. I just believe that.”
Rusty continues, “I've had a great career, wonderful kids and the love of a beautiful person, Nancy. I think to myself 'Wow, am I lucky!’”
The ALS Association Golden West Chapter salutes Rusty Selix as our 2018 Advocate of the Year for leveraging his expertise and influence in the public policy arena as a powerful spokesperson to advance the Chapter’s commitment to providing care and discovering cures for ALS.
“Like the morning sun you come and like the wind you go.”
- from “Uncle John’s Band” by the Grateful Dead.
Throughout his life, Russell “Rusty” Selix has been told by many that he is the most optimistic person they have ever met.
As a professional advocate in California for over 30 years, Rusty worked tirelessly on important issues on behalf of people in the mental health community. His extensive knowledge of healthcare legislation has put him at the center of some of the most important public policy milestones in patient care advocacy.
“He is an amazing advocate,” shared Donna Campbell, Deputy Legislative Affairs Secretary at the Office of Governor Edmund G. Brown Jr. “He is tenacious, smart and easy to work with - a consummate policy professional.”
As the Executive Director for the California Access Coalition and of the Mental Health Association in California, Rusty has been a leading expert in mental health and state finance, as well as state and local government policy. He also served as the Executive Director/Director of Policy and Advocacy for the California Council of Community Behavioral Health Agencies, a statewide association of non-profit agencies dedicated to providing mental health and substance use disorder programs and services.
“Rusty is creative, personable, smart, and someone who constantly questioned the status quo.” said Diane Van Maren, Former Consultant to Pro Tempore Steinberg, and the Senate Budget and Fiscal Review Committee. “We worked closely together... Rusty believed in making positive change happen and he got results.”
One of Rusty’s most significant career triumphs was the Proposition 63 Campaign. Rusty was the leader and original co-author, along with Mayor of Sacramento Darrell Steinberg, of this California ballot measure, which was passed into law in 2004. It generates nearly $2 billion annually which was invested in transforming California’s public mental health systems.
Rusty Selix challenged us to increase our understanding of the toll mental illness has on people’s lives, their families, and society,“ saiid California State Senator Jim Beall. “This resulted in less stigma, and better services leading to healthier lives for people with mental illnesses. Without him, California’s mental health care system would not be what it is today. There is no stronger advocate for people with mental illnesses than Rusty Selix, and I thank him for his hard work, dedication, and humanity. He has made California a better place.
When he wasn’t advocating in Sacramento, the thing Rusty loved to do most was hike. His favorite memories include climbing over 14,000 ft to the summit of Mt. Shasta - a journey he made four times. “It was like being on top of the world.”
He has always loved music and going to concerts, especially his favorite band, The Grateful Dead. An avid golfer, Rusty says that a person’s character is best revealed on the golf course. Rusty was also well known at the state capitol for being one of the biggest fans of the San Francisco Giants and for being an expert bridge player.
Then, Rusty was diagnosed with ALS in 2017.
He began attending the multidisciplinary ALS team clinic at the ALS Treatment and Research Center at UCSF and also the Forbes Norris Center at California Pacific Medical Center. When he learned this care was funded by the philanthropic efforts of The ALS Association Golden West Chapter, and not by insurance or the state, he immediately called to express his personal thanks.
Rusty then connected with Fred Fisher, President and CEO of the Chapter, and Fred Noteware, of Noteware and Rose Government Relations, who serves as a lobbyist for the Golden West Chapter. They met and asked him to apply his deep expertise on behalf of the ALS community to help improve care services for people with ALS in California. Rusty told them, “This is right up my alley.”
“I had known Rusty for over 40 years here since we both got our start at the capitol around the same time,” shared Fred Noteware. “Over the years, he was someone that I had looked up to for a variety of reasons, in part because of he is such an expert on all things related to the mental health community.”
"There are certain people at the capitol who rise to the occasion, have respect from both sides of the aisle on policy matters, and that is Rusty Selix,” said Noteware. ”He is a true gentleman, who always has a smile and is a pleasure to be around.”
On April 30, 2018, Rusty and Fred Fisher testified in Sacramento requesting support for the Golden West Chapter's wraparound model of care, which combines medical, community and home-based services and support and which is proven to help people with ALS live better and longer with the disease. It is also designed to accelerate the search for effective treatments and cures for ALS. (You can watch their full testimony here, starting at 1:50:46)
“One of the things that Rusty is an expert in is navigating the state budget process, how the state decides where and how it will spend its money,” said Noteware. “This is very different from the legislative process, or how a bill becomes a law."
On June 27, 2018, Governor Brown signed budget bill SB 840 in support of this model of care for California's ALS community, declaring the bill a “milestone.” It was important recognition of the diverse and ongoing needs for people living with ALS and their families, acknowledgement of the work of The ALS Association, and an unprecedented commitment of state government funding to support care for families facing this devastating disease.
“This funding is unprecedented here in California and these resources will directly benefit the care and treatment of people with ALS,” said Fred Fisher. "We can’t thank Rusty for his many insights and leadership in this process.”
“Some people want it to happen, Some wish it would happen. And others, make it happen,” Kassy Perry, President & CEO of Perry Communications group proclaims when asked to describe Rusty. “Rusty is a true champion in every sense of the word and we all were fortunate to have him shine so brightly for decades.”
Kassy continues, “Congresswoman Doris Matsui wrote into the Congressional Record that she honored Rusty for not just his many accomplishments, but for the spirit and manner in which he achieved them. The ALS community will now benefit from his brilliance and passion for access to care, and support for research into the disease. I can think of no one better equipped to affect change than Rusty Selix.”
Even with his numerous professional accomplishments, Rusty has made the time to create a fulfilling and gratifying personal life. “My parents gave me the skill set and education to accomplish anything I set up to do. I grew up in a loving and peaceful household with a vast extended family with whom I am very close and I have wonderful friends.” Rusty shared.
“Obviously it’s more difficult now, but somehow I remained strong,” says Rusty. “I have hope and I always focus on the positive. I am lucky to always have that in me. I think it’s a great way to go through life.”
“My wife, Nancy, is more than the love of my life. She is an amazing person. I never thought I would find someone to love me and make me enjoy life the way that she has.”
Rusty also feels blessed to have three amazing children. His daughter, Amy and her fiancé Ryan are both teachers. His son Shae is in tech and hopes to use his skills sets to pursue his passion and environmental issues, while enjoying life with his partner Jason. His youngest, Sydney is following in his footsteps. She has graduated from Northwestern, Rusty’s alma mater, and is now studying law to eventually pursue a career in public policy.
“I hope I have passed onto my children the ability to always see the hope and possibilities in everything,” Rusty shares. “Even after my diagnosis I enjoy my life. I wake up every morning happy. Sure, I have bad moments but I still have hope that something will come along and that I'm going to beat this disease. I just believe that.”
Rusty continues, “I've had a great career, wonderful kids and the love of a beautiful person, Nancy. I think to myself 'Wow, am I lucky!’”
The ALS Association Golden West Chapter salutes Rusty Selix as our 2018 Advocate of the Year for leveraging his expertise and influence in the public policy arena as a powerful spokesperson to advance the Chapter’s commitment to providing care and discovering cures for ALS.
