Making ALS Advocacy My Purpose

Chris was diagnosed with ALS in 2024. Before that, he spent 40 years in the oil and gas industry, working and living in eight countries across five continents. He’s dedicated himself to helping others with ALS move forward.

This content is sponsored by Tanabe Pharma America, Inc. (TPA) and is intended for US audiences only. Any other present or future content posted by the contributor, not expressly designated as “Tanabe Pharma America, Inc. – sponsored content” is not associated with TPA.

Patient stories reflect the real-life experiences of persons diagnosed with ALS who have been prescribed RADICAVA ORS^® (edaravone). However, individual experiences may vary. Patient stories are not necessarily representative of what another person using RADICAVA ORS^® may experience.

These experiences are shared by patients and/or caregivers of patients on treatment at the time this content was created.

This is a real-life experience shared by an actual patient who is taking RADICAVA ORS^®.

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 healthcare provider with any questions regarding a medical condition.

Individual results may vary. Please see Important Safety Information below, full Prescribing Information, and Patient Information.

Life Before ALS

My life used to be full of physical activity. I played a lot of golf, loved going trout fishing, and would spin on my bike for exercise. When my wife Andrea and I were younger, we decided to make Spring, Texas, just outside of Houston, our home.

Andrea and I are blessed with a wonderful family. We have two sons together, who are 22 years old. Andrew is studying at George Washington University, while Matthew is studying at the University of Denver. I also have an older son, Michael, from a prior marriage. He lives in Denver and works as a nurse practitioner.

Refusing to Let ALS Define Me

I felt emotionally stuck after hearing my diagnosis. I used to think ALS was something that happened to other people. It took me a while to face my new reality of life with ALS. Something that helped me move forward was advice from Andrea. One day, when I was worried about the future, she said, “All we need to think about is today. Let’s make today a good day and worry about the future when it gets here.” That advice changed everything for me.

Andrea has always been my rock, and my sons encourage me every day. They helped me realize that if I spent all my time worrying about what was coming, I’d lose sight of what’s important today.

With that new focus, I decided to dedicate myself to helping others in their fight against ALS. I became active with an ALS nonprofit organization, and I started advocating for policy changes and raising awareness about ALS. I joined a team that successfully lobbied the Texas legislature to make Medigap insurance more accessible for people with ALS and end-stage renal disease under age 65. We refused to give up. It was a huge win for the ALS community.

Taking Action With Treatment

I was fortunate to have a neurologist who gave me a good picture of the options available to me and shared the benefits and risks of RADICAVA ORS^®. He encouraged me to start RADICAVA ORS^® and riluzole after I was diagnosed. He said I should be on RADICAVA ORS^® because he thought it would help me, and he explained it was shown to help slow down the loss of physical function for some people with ALS.

After I was prescribed RADICAVA ORS^®, I received support from an ALS Clinical Educator. She’s a member of the JourneyMate Support Program™ team, and she helps educate people with ALS about the disease and RADICAVA ORS^®. She talked me through how RADICAVA ORS^® may help people with ALS and she sent me a treatment starter kit. She took time to answer all my questions and made sure I knew what to expect when I began treatment. It felt like she really cared about what I needed.

I have been taking RADICAVA ORS^® since September 2024. Starting treatment was a milestone for me, and staying on treatment means a lot to me, Andrea, and our sons. I see RADICAVA ORS^® as a critical component in my fight against ALS.

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

Do not receive RADICAVA ORS^® (edaravone) if you are allergic to edaravone or any of the ingredients in RADICAVA ORS. RADICAVA ORS may cause serious side effects, including hypersensitivity (allergic) reactions and sulfite allergic reactions. Common side effects reported include bruising (contusion), problems walking (gait disturbance), headache and fatigue.

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

Learn more about ALS and how RADICAVA ORS® may help you.

Making Hope a Source of Strength

Living with ALS can be tough, so focusing on hope has become a big part of my journey. I’ve found hope and joy in music. Houston has a vibrant music scene, and Andrea and I love going to see bands that cover artists like Rod Stewart, the Beatles, and Bob Seger.

I’ve also found hope in connecting with others and continuing to travel. I may not be playing golf anymore, but I still go to the club to hang out with friends. Andrea and I continue to visit Mexico, Alaska, and Vancouver Island, and our family loves spending time in Argentina.

Making healthy decisions is also a source of strength for me. I make sure to take my medications, focus on eating right, and staying as active as I can. I’ll try to do these things for as long as possible, and I hope they’re helping to slow down my ALS progression. 

Helping Others Find Their Way

Every day offers me opportunities to help others find hope. I do so by continuing to advocate for people with ALS and their caregivers. It’s meaningful work that helps me stay focused on today. It gives me purpose. Andrea jokes that it’s like a job for me now.

Sharing my story also gives me the chance to make a difference. It helps me let others with ALS and their caregivers know that they’re not alone. What I’ve done to deal with my ALS and move forward may not be right for everyone. However, if my story helps someone realize they can make the most of each day in ways that work for them, then it’s worth it.

ALS felt like an unlucky break for me, but I believe it’s important not to retreat or let the disease beat you down. Don’t let the challenges take away your spirit. I learned that by maintaining a positive attitude, life with ALS can be more enjoyable for me even in tough times.

Learn more about participating in the Share Your Story program at ShareYourALSStory.com.

The JourneyMate Support Program™ offers educational support and resources for patients who are considering or have already been prescribed a Tanabe Pharma America, Inc. (TPA) product. The program does not provide medical advice and does not take the place of a patient’s doctor. All questions about a condition, diagnosis, or treatment should be referred to the patient’s doctor. If a patient has a medical emergency, they should call 911. Adverse events or product complaints should be reported by calling 1-888-292-0058.

Read Ed’s story as he shares his experience with ALS and RADICAVA ORS^®.

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.

Common side effects reported include bruising (contusion), problems walking (gait disturbance), headache and fatigue. These are not all the possible side effects of 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 Tanabe Pharma America, Inc. at 1-888-292-0058.

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

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

RADICAVA ORS is a registered trademark of K.K. BCJ-94.
The corporate symbol of Tanabe Pharma America is a registered trademark of Tanabe
Pharma Corporation.
JourneyMate Support Program is a trademark of Tanabe Pharma America, Inc.
Intended for US Residents Only.
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