A Musician's Journey to Finding His Rhythm With ALS

In life, there are moments that challenge us, test our resilience, and lead us to reevaluate our priorities. Craig Fuchs, a former band director and musician from Kansas City, Missouri, was confronted with this reality at 61 years old when he was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, a neurodegenerative disease that leads to muscle weakness, eventual loss of function, and currently has no cure.

Early Life and Passions

Born and raised in a family of musicians, Craig was immersed in the world of music from a young age. His father and uncle were both high school band directors, so Craig grew up in the band room, spending evenings in the back of the room or school hallways while his father conducted rehearsals.

His love for music led him to follow in his family’s footsteps and pursue a career in music education. After teaching high school for 10 years, Craig transitioned to higher education, spending 24 years at Pittsburg State University, where he served as the Director of Bands and later as the Chair of the Music Department and Director of the Honors College. 

Beyond academia, Craig’s love for music found expression in globetrotting adventures. With a wanderlust that knew no bounds, he traversed the globe, conducting bands and orchestras from Europe to South America. His passion for travel intertwined seamlessly with his love for music, creating memories to last a lifetime. 

Facing ALS: A New Reality

In August of 2021, Craig began experiencing symptoms that would ultimately lead to his ALS diagnosis. What started as difficulty straightening his right leg at night soon progressed to stiffness and weakness in his limbs. 

Craig received his official diagnosis of ALS after only six months of seeking various medical opinions – a quick timeline compared to others living with the disease. 

After his diagnosis, Craig’s daily life changed significantly. He relied on a power wheelchair for mobility and his wife Kelly became his personal caregiver. 

However, as is common for family caregivers, Kelly’s workload became overwhelming. Recognizing her mounting stress, Craig and Kelly hired a home assistant to support Craig, which alleviated some of the pressures on Kelly. This change made a significant difference, providing Craig with much-needed assistance while allowing Kelly to focus on her work, knowing Craig is supported. 

As he adapts to the changes brought about by ALS, Craig finds comfort in the simple joys of life — reading, listening to music, and spending time with loved ones. Despite the physical limitations of the disease, he says he does his best to maintain a positive attitude, fueled by a deep-seated belief in the power of love and human connection.

Treatment Goals: Slowing the Progression 

For Craig, the primary goal of treatment was to slow the progression of his disease. When Craig’s doctor first proposed adding RADICAVA ORS^® (edaravone) to Craig’s treatment regimen, he explained to Craig the benefits and risks of treatment: in a clinical study, RADICAVA^® IV (edaravone) helped to slow the loss of physical function as measured by the ALS Functional Rating Scale—Revised (ALSFRS-R) by 33% compared to placebo and RADICAVA ORS offers the same efficacy in an oral formulation. The most common side effects of RADICAVA^® IV include bruising (contusion), problems walking (gait disturbance), and headache. Fatigue was also reported in 7.6% of patients taking RADICAVA ORS^®. Talk to your doctor about all the benefits and risks associated with treatment. 

Each treatment day, Craig dutifully took his medications, placing his trust in the hands of his medical team and leaning into his personal faith. Craig said, “For me, I had no issues taking RADICAVA ORS^®, and I think it tasted fine. The only annoying part for me was having to wait an hour after I took it to have my morning coffee.” RADICAVA ORS^® should be taken in the morning on an empty stomach after overnight fasting. No food or drink should be consumed (except water) for 1 hour after administration. Please see Instructions for Use.

RADICAVA^® IV and RADICAVA ORS^® are indicated for the treatment of amyotrophic lateral sclerosis (ALS). Do not receive RADICAVA^® IV or RADICAVA ORS^® if you are allergic to edaravone or any of the ingredients in RADICAVA^® IV and RADICAVA ORS^®. 

Please see Important Safety Information below and click here for full Prescribing Information and Patient Information.

Finding Strength in Community

As Craig’s journey unfolded, he found solace in sharing his story with those traversing similar paths. Through online communities and support groups, he forged bonds of camaraderie with others living with ALS, sharing insights, experiences, and words of encouragement.

He also recognizes the reciprocal nature of support, where sharing one’s story not only aids others but also serves as a form of personal catharsis. As Craig says, “You develop a community of friends who are in the same situation. I think just having a sounding board of people who are experiencing what you do is really important.” Because of this, Craig also encourages others to share their experiences living with ALS.

The Mitsubishi Tanabe Pharma America Inc. (MTPA) Share Your Story program allows people living with ALS and/or their caregivers to share their experiences of living with ALS and why treatment with RADICAVA^® matters to them. 

Interested in sharing your story about ALS and RADICAVA^®? Learn more about participating in the Share Your Story program at ShareYourALSStory.com/Craig. 

Through sharing his story, Craig hopes to inspire others facing similar challenges. He knows firsthand the importance of having a supportive community and a strong sense of purpose. By lending a helping hand to those in need and sharing his experiences, Craig hopes to make a difference in the lives of others, just as others have done for him.

IMPORTANT SAFETY INFORMATION
Do not receive RADICAVA (edaravone) or RADICAVA ORS (edaravone) if you are allergic to edaravone or any of the ingredients in RADICAVA and RADICAVA ORS.

Before you take RADICAVA or RADICAVA ORS, tell your healthcare provider about all of your medical conditions, including if you:

• have asthma.
• are allergic to other medicines.
• are pregnant or plan to become pregnant. It is not known if RADICAVA or RADICAVA ORS will harm your unborn baby.
• are breastfeeding or plan to breastfeed. It is not known if RADICAVA or RADICAVA ORS passes into your breastmilk. You and your healthcare provider should decide if you will receive RADICAVA or RADICAVA ORS or breastfeed.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

What are the possible side effects of RADICAVA and RADICAVA ORS?
RADICAVA and RADICAVA ORS may cause serious side effects, including hypersensitivity (allergic) reactions and sulfite allergic reactions.

• Hypersensitivity reactions have happened in people receiving RADICAVA or taking RADICAVA ORS and can happen after your medicine has been given.
• RADICAVA and RADICAVA ORS contain sodium bisulfite, a sulfite that may cause a type of allergic reaction that can be serious and life-threatening. Sodium bisulfite can also cause less severe asthma episodes in certain people. Sulfite sensitivity can happen more often in people who have asthma than in people who do not have asthma.
• Tell your healthcare provider right away or go to the nearest emergency room if you have any of the following symptoms: hives; swelling of the lips, tongue, or face; fainting; breathing problems; wheezing; trouble swallowing; dizziness; itching; or an asthma attack (in people with asthma).
  

Your healthcare provider will monitor you during treatment to watch for signs and symptoms of all the serious side effects and allergic reactions.

The most common side effects include bruising (contusion), problems walking (gait disturbance) and headache.

These are not all the possible side effects of RADICAVA or RADICAVA ORS. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. You may also report side effects to www.fda.gov/medwatch or Mitsubishi Tanabe Pharma America, Inc. at 1-888-292-0058.

INDICATION
RADICAVA and RADICAVA ORS are indicated for the treatment of amyotrophic lateral sclerosis (ALS).

Please see full Prescribing Information and Patient Information.

The information provided here is general in nature and is not intended to be a substitute for professional medical advice, diagnosis or treatment. You are strongly encouraged to seek the advice of your doctor or other qualified health care provider with any questions regarding a medical condition.