Faces of ALS: National Nurses Week

lesturner Faces of ALS, Home Page, Support Services

“I help fight ALS because I was blessed with the opportunity to do so.  I have never worked with such a devastating disease and yet a patient population that is so amazingly selfless and courageous.  I consider it an honor to be able to help support this incredible group of individuals and their families.” – Les Turner ALS Foundation Support Services Team Member, Karen Steffens, RN, CHPN, CCM.

In 1993, the American Nurses Association declared May 6-12 as the national week to celebrate and elevate the nursing profession.

National Nurses Week is a time to recognize the contributions and positive impact of America’s 4 million registered nurses. Each year, the celebration ends on May 12, Florence Nightingale’s birthday.

We at the Les Turner ALS Foundation are honored to have four extraordinary nurses as part of our Support Services Team. These exceptional individuals visit families in the comfort of their own home between Clinic appointments, working tirelessly to ensure no one living with ALS has to face the disease alone.

To learn more about their role and its importance in caring for people living with ALS, we spoke with Karen Steffens, RN, CHPN, CCM. Karen received her Associate Degree in Nursing from William Rainey Harper College in 1994. She is also a Certified Hospice and Palliative Nurse and Certified Case Manager. Before joining the Les Turner ALS Foundation, Karen worked as a Hospice Care Manager with JourneyCare where she worked with her first ALS Patient. Karen joined the Foundation as an ALS Support Services Coordinator in 2016.

What do you do in your role as a nurse for the Foundation?

I help patients and their families navigate the ALS disease process with a focus on their medical and physical needs.  This includes the patient as a whole; mind, body and spirit all have an impact on their physical presentation.  I also provide education and resources for maintaining safety, comfort and quality of life. 

Why is providing nursing to people living with ALS so important to helping them live with the disease?  

Our ALS patients generally see their ALS Clinic Team once every three to four months. When they do, it’s a long day and they often forget questions or time does not allow them to ask all their questions or adequately share what concerns they may have.  As a Support Services Team member, patients appreciate knowing that there is someone they can meet with and reach out to in between those clinic appointments who knows their medical background and has the expertise to provide information they may need. 

What are some of the highlights of your job?

Some of the highlights to my job involve finding solutions to problems.  Whether it’s helping to expedite an appointment, medication or treatment or providing resources such as equipment, speech devices or adaptive clothing.  There’s a sense of accomplishment and great joy knowing that my efforts contributed to bringing a sense of support and a better quality to someone’s life.

What makes you hopeful about the future of ALS?

ALS awareness seems to be growing which is crucial for both emotional and financial support to the ALS community.  Not only does increasing awareness help enhance improvements with direct patient care but it also provides for increased funding for continued worldwide research so that we may one day soon find a cure. Learn more about our Support Services.