Senate Committee on Appropriations
Subcommittee on Labor, Health and Human Services, Education and Related Agencies

Hearing on Amyotrophic Lateral Sclerosis (ALS)
May 11, 2005
Testimony of Kate Linder

Good morning.  Mr. Chairman, Members of the Subcommittee, thank you for inviting me to participate in this important hearing today.  I am honored to be here.

My name is Kate Linder and I am an actress, having played the role of Esther Valentine on the daytime television drama, The Young and the Restless, for the past 23 years.  I also am an advocate for people with ALS, their families and caregivers and I am pleased to be here today to share with you my personal relationship with this terrible disease. I also hope that through this hearing, and in our meetings with your colleagues in both the Senate and House, we will be able to raise awareness of the disease and support for our cause.

Five months ago, on December 8, 2004, my 49 year old brother-in-law was diagnosed with ALS in Seattle, Washington. At the time, I only had a passing knowledge of ALS that is to say, I had heard of ALS, or Lou Gehrig’s disease.  Like many, many Americans, I did not know the nature of the disease or how it would change the lives of our entire family. I did not know that ALS robs a person of the ability to move their arms and legs, to speak and to breathe.  Nor was I aware that there was no cure for the disease.  And that is why I am here today: To raise awareness and to help advance the effort to find a treatment and cure for ALS.

Kate Linder testifies

Scott and his wife have two daughters and his diagnosis has devastated our entire family. But we will continue to fight ALS.  Yet, it still is hard for me to believe -- even now, 5 months later -- how someone so young and so full of life could be stricken with such a terrible disease.

Since Scott’s diagnosis, I have made it my mission to do everything I can to support Scott in their fight against ALS.  Working with The ALS Association (ALSA), we have created a new public awareness campaign called “Kate’s Club^sm,” which will focus much needed attention on the disease.  Through The ALS Association and Kate’s Club I am networking with fellow actors, fans, and volunteers, to raise awareness and encourage them to join us in this important fight.  I also have filmed a public service announcement to promote one of ALSA’s signature events, the Walk to D’Feet ALS.  This year, ALSA’s Chapters are staging more than 147 walks in cities across the country to raise funding to support ALS research and patient services.  Last year, these walks collectively raised more than $9 million and more than 90,000 people participated in the events.  I hope that our work with Kate’s Club will help raise even more funding to support programs and research that are so essential to finding a treatment and cure for ALS and to improving the quality of life for PALS and their families and caregivers.

I also wanted to briefly praise the efforts of a fellow actor, Alan Rosenberg, who also is with us today for this hearing.  Alan, who portrayed a person with ALS on the hit show The Guardian, also has helped raise awareness of ALS and funding for our fight, having filmed a recent public service announcement and participated in numerous ALSA events, and events organized by the Greater Los Angeles Chapter of The ALS Association. 

As actors and actresses, people in my profession are used to playing many roles as part of our everyday lives.  But what I also would like to focus attention on here today is the important role that family caregivers play in the lives of people with ALS.  Specifically I would like to highlight the need for respite care.

As people with ALS lose the ability to walk, move their arms, talk and even breathe, the disease requires them to rely on caregivers, usually their families, to provide the care and assistance that is needed to perform normal activities of daily living.  In many cases, particularly in the later stages of the disease, people with ALS have a need for continuous care, 24 hours a day, seven days a week.  The burden placed on caregivers and family members is tremendous.  Therefore, these families and caregivers have a significant need for respite care services. 

Respite care provides temporary relief to caregivers of individuals with chronic illnesses and disabilities and is a key component of quality long-term care.  Respite care may take place in the home or in a facility and allows caregivers much needed time off, while providing quality care for the loved one.  Respite care helps keep families together, helps prevent abuse and neglect, and forestalls premature, costly institutionalization and possible impoverishment.  Virtually every family who is touched by ALS has a need for respite care services.

Legislation, such as the Lifespan Respite Care Act, which passed the Senate in 2003, is needed to help expand the availability of respite care services for people with ALS and their families.  The bill is expected to be introduced again this year by Senators Clinton and Warner and I hope Congress will pass this much needed legislation.  When it does pass, I also hope that this Subcommittee will support funding for the programs included in the bill.  They would be a tremendous benefit to people with ALS and their families across the country.  And they would benefit Scott and his family as they continue their fight against ALS.

Thank you again for inviting me to participate in this hearing.