I first noticed something was off in 2005. My job as the athletic director for an education nonprofit organization in Albuquerque, New Mexico, included raising money for underfunded school programs, scholarships, and supplies. Every Monday, I’d sign about 100 checks for the schools receiving money. While this task usually wasn’t a big deal to complete, it was becoming increasingly difficult to get through the stack due to weakness in my hand.

I eventually saw my primary-care doctor who thought the problem was due to an old neck injury from football. After an MRI didn’t show any physical injuries to my spinal cord or nerves, I continued life as normal. Soon I began experiencing weakness in my right arm and my speech was starting to slur. My doctor told me to read about amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease)—just in case—and sent me to an ALS clinic.

At the age of 56, after a series of tests in 2011, a neurologist diagnosed me with ALS. When I heard the news, a flood of emotions swallowed me up. I’d been active my whole life and I worried about what this meant for me, my wife, and our two adult children. My mind raced with thoughts of needing to establish advance directives, write a will, and pay off debts. I cried so much that I had to call my wife to come pick me up and drive me home.

Adapting to a New Lifestyle

ALS IS A progressive neurological disorder affecting the motor neurons that control muscle movements and breathing. It’s debilitating and terminal. Hallmarks of the disease include muscles weakening and eventual loss of function as the disease progresses. Breathing, walking, speaking, chewing, swallowing, and more can be affected.

I feel grateful that my disease progression has been slow. Life expectancy for someone with this disease is just three to five years from when symptoms first appear. However, for five years following my diagnosis, I continued to work and drive, and I attended a monthly support group where I met others living with ALS and learned from their experiences. In 2016, I reached a point where I needed a cane and a walker to help me get around.

In 2022, I heard about a treatment called RADICAVA ORS^® (edaravone), which may help to slow the progression of ALS. I asked my doctor about it. After he explained the benefits and risks of treatment, we decided it was worth trying and I began taking it. In a clinical study, RADICAVA^® (edaravone) helped to slow the loss of physical function as measured by the ALS Functional Rating Scale (ALSFRS-R) by 33 percent compared to placebo and RADICAVA ORS^® offers the same drug in an oral formulation. The most common side effects of RADICAVA^® include bruising (contusion), problems walking (gait disturbance) and headache. Fatigue was also reported in 7.6 percent of patients taking RADICAVA ORS^®. Talk to your doctor about all the benefits and risks associated with treatment.

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

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

Making the Most of It

DESPITE THE CHANGES to my life, I refuse to let myself sink into depression. I’m now 69. I use a power wheelchair, I’m losing the use of my hands, and my voice is very weak. I eat food with a robotic feeder and I use a feeding tube to help me get all the calories I need. I also sleep with a ventilator at night. I’m fortunate to have my wife as my primary caregiver, which allows my kids to live normal lives.

On my good days, I enjoy going out to lunch with my friends, or to a sports restaurant with my brother Johnny to cheer on the local college basketball team. The flexibility this oral treatment option offers allows me to travel and my wife and I continue to plan RV trips and other vacations. I’m slowly checking off my bucket list of sports events and road trips.

Store RADICAVA ORS^® upright at room temperature between 68°F-77°F. Protect from light.

I continue to share my ALS story, in the hopes that others living with this disease can learn from my experiences, just as I did from my support group.

Mitsubishi Tanabe Pharma America’s Share Your Story program allows people living with ALS and their caregivers to share their own experiences of living with the disease and why treatment with RADICAVA ORS^® matters to them.

When I was first diagnosed, I couldn’t have imagined that I’d still be here 13 years later, enjoying life with my loved ones. My approach is simple: I take one day at a time, focus on what matters most and let go of what I can’t control. I enjoy waking up every day, living to the fullest of my limited abilities, and spending time with my friends and family.

Interested in sharing your experience with others? Call a JourneyMate^TM Resource Specialist toll-free at 1-855-457-6968 or visit ShareYourALSStory.com/GeneStory to explore stories from others impacted by ALS, and sign up for the opportunity to share your own.

INDICATION

RADICAVA ORS^® (edaravone) is indicated for the treatment of amyotrophic lateral sclerosis (ALS).

IMPORTANT SAFETY INFORMATION

Do not receive RADICAVA ORS^® (edaravone) if you are allergic to edaravone or any of the ingredients in RADICAVA ORS.

Before you take 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 ORS will harm your unborn baby.
• are breastfeeding or plan to breastfeed. It is not known if RADICAVA ORS passes into your breastmilk. You and your healthcare provider should decide if you will receive 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 ORS?

RADICAVA ORS may cause serious side effects, including hypersensitivity (allergic) reactions and sulfite allergic reactions.

• Hypersensitivity reactions have happened in people taking RADICAVA ORS and can happen after your medicine has been taken.
• RADICAVA ORS contains 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 of RADICAVA^® (edaravone) and RADICAVA ORS include bruising (contusion), problems walking (gait disturbance), and headache.

These are not all the possible side effects of RADICAVA and 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.

Please see the full Prescribing Information and Patient Information, also available at www.radicavaors.com.