One Person’s Mission to Spread Hope, Joy, and ALS Awareness

This content is sponsored by Mitsubishi Tanabe Pharma America, Inc. (MTPA) and is intended for US audiences only. Any other present or future content posted by the contributor, not expressly designated as “Mitsubishi Tanabe Pharma America, Inc. – sponsored content” is not associated with MTPA. Deb Winters is an actual patient who is taking RADICAVA^® ORS (edaravone).

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 on Radicava.com.

 

Deb, 70, is a retired pastor who was diagnosed with ALS in 2022. She lives with her husband, Howard, and her dog, Samson, in Huntington, West Virginia, where she focuses on sharing joy, spreading hope, and raising ALS awareness.

 

An Answer at Last

In my experience, no one ever says, “I had something wrong with my hand and I got diagnosed with ALS that day.” My story follows a similar winding path.

In 2020, I had shoulder replacement surgery. I was doing physical therapy (PT) three times a week for months. But instead of making progress, I was getting worse. After the third month of PT, I could barely get my arm above my head. A month or so after that, I couldn’t raise my arm at all. I couldn’t even turn doorknobs. The physical therapist also noticed that I had lost all the mass between my thumb and forefinger on my right hand. He said, “This isn’t normal, Deborah.” We knew something else was going on.

Over the next year, I saw five different doctors, besides my primary care provider, until finally, I was diagnosed by the neurologist who runs my local ALS clinic. It was not the first time I had heard of ALS, so it wasn’t a total shock. I didn’t know a lot about it, but I did know that it was terminal. Yet, as hard as it was to get the diagnosis, it was also a relief to have an answer at last.

 

Finding a Way to Move Forward

After the diagnosis, my husband and I were both pretty numb. We spent the next 10 months preparing for me to die, getting everything in order. You go see the people that you want to see, you make sure that things are said that need to be said. You focus on finding a way to move forward.

Howard and I have been married for not quite six years and have what we call a tumbleweed family. Together, we have six (biological, step, and adopted) kids who are all grown up and scattered across the country. We’re blessed in so many ways. But sharing this news was really hard.

Telling my elderly parents I have ALS was incredibly difficult. And telling the church congregation who had loved me and prayed for me was also really tough. But the daughter that Howard and I adopted, telling her that her now adopted mom had a terminal diagnosis…I still can’t talk about that.

What helped me move beyond the diagnosis was a lot of prayer, a lot of honest conversations with my family, and the realization that I was still here—and that I still had work to do—raising ALS awareness. It’s my foundation for joy and for stability.

 

Wrestling With the Loss of Independence

When you’re a Type A, 90-miles-per-hour person like me, it takes time to accept the limitations of your physical body. I used to be good at cooking. And now I’m called the “executive chef,” because my arms don’t work to cut food. So, I get to taste, and I get to say “No, not yet.” That was the biggest impact for me, to accept that I couldn’t continue to do things that I used to do by myself. Now I realize that it’s OK to ask for help because you’ve got to let people know what you need. It’s important to let them know how they can make a difference in your life.

I still sometimes wrestle with losing control, but with ALS, I’m learning to let go. But I’m still gonna fight for every bit of independence I can keep. Nowadays, I have slowed down in my life, and I’m spending more time with those I love and those that love me. I’m finding a way to live in this new normal. My husband and I are snowbirds, and we spend winters in Arizona. My parents are there, too, so I get to hang out with them for a bit. And that’s a blessing.

I recently had a daddy-daughter date with my 88-year-old father who has been fighting cancer for 25 years. It was just the two of us, and we got to share and talk. What an amazing, joyful experience that was. He’s my inspiration.

 

Walking Full-Time Into ALS Awareness

I’m always flabbergasted when I tell someone I have ALS and they have no idea what I’m talking about. I think the ice bucket challenge has helped bring awareness for sure. But with most people, their eyes just glaze over.

In my work as a pastor and chaplain, I had come across ALS before, but I was not all that educated about it. After my diagnosis, one of the most frustrating things was figuring out where to get good information. I didn’t know about the ALS Association resources. And I certainly didn’t know anything about treatments. So, I started asking questions. I read the medical journal reports on clinical trials. And I talked with my doctor, and together we made the choices that were right for me.

 

 

Finding the facts about ALS can be challenging. That’s one of the reasons that raising awareness is so important. One day, I said to myself, “So what are you going to do about it, Deb?” And that’s when we did our first ALS rally. We raised $21,000 the first year, and we’re planning to do it again this year. And since I can’t cook anymore, we’re also doing a cookbook fundraiser. Knowing that I’m making a difference brings me joy. And although receiving an ALS diagnosis was life-changing, it’s important to know that it’s still possible to find joy in the middle of that life-changing event.

I’ve stepped down from full-time pastoring and now I’m walking full-time into ALS awareness and sharing hope and joy: that’s what I do. We’ve also run an in-person support group, although we don’t call it a support group. And for ALS Awareness month we’re doing an “empathy dinner” to allow people to know what it’s like to not be able to do what you can normally do. Everyone who attends will be given a disability, like your arm in a sling or being in a wheelchair.

I’ve also been working on a 3” x 5” card with ALS facts that I can keep in my purse to say, “Here’s what it is. But if you’re interested in more information, this will help you.”

 

What RADICAVA ORS^® (edaravone) Means to Me

After I was diagnosed, my neurologist and I discussed treatment options. I started RADICAVA ORS^® about two months later.

My doctor told me that RADICAVA^® has been shown to slow the loss of physical function that comes with ALS. And for me, I think it has made a difference. My progression continues to be slow, and I am incredibly grateful for this medication.

Individual results may vary.

In the clinical study, RADICAVA^® slowed the loss of physical function as measured by the ALS Functional Rating Scale–Revised (ALSFRS-R). At 24 weeks (about 6 months), patients who did not receive RADICAVA^® declined more rapidly in physical function, having lost an average of 2.49 points more than those who received RADICAVA^®. The most common side effects of RADICAVA^® 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.

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

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.

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

RADICAVA ORS^® has been appropriate for me. It’s easy for me to travel with and it hasn’t interfered with us living our lives. It’s also easy for my husband to administer. Howard wakes up earlier than I do, and he keeps the bottle of RADICAVA ORS^® and the syringe next to his side of the bed, regardless of where we’re sleeping. When he wakes up, he prepares the dose, nudges me awake to receive the medication, and then I go back to sleep. By the time I’m ready to get up, the coffee is ready and I’m good to start the day.

He makes sure to follow the instructions my neurologist gave us:

• Take RADICAVA ORS^® first thing every morning after fasting overnight
• Wait at least 1 hour after taking it before eating or drinking anything except water
• RADICAVA ORS^® should be stored upright at room temperature between 68°F-77°F and protected from light
• Read the Instructions for Use before you take RADICAVA ORS^®

RADICAVA ORS^® should be taken in the morning on an empty stomach, after overnight fasting, using a 5 mL syringe that comes with the product.

No food or drink should be consumed (except water) for 1 hour after administration. Please see full Administration and Dosing Instructions for RADICAVA ORS^® for details on how to prepare and administer the medication.

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

[16,000+] patients with ALS have been treated with RADICAVA^®a

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

 

 

My Advice for Others Living With ALS

ALS can feel very isolating, and I’ve gone through periods of feeling like life is passing me by. But as my world has gotten smaller, the relationships have gotten stronger. My husband and I have definitely gotten closer.

I wish I hadn’t spent the first year thinking I was getting ready to die. Otherwise, you’re just gonna sit on the couch and pout, and that’s just not in my DNA. This is just reality. You have ALS, and you cannot make that go away. But you can look at each day as a gift and enjoy each day. And you can share your story. All too often, people don’t know ALS. And the way to make a difference is to speak up. Speak loudly, speak boldly, and speak courageously. And tell your story.

Sometimes we don’t want to share the bad stuff; we want to keep our private lives private. But we all need a role model to move forward. Allowing people to hear your story not only gives them hope, it also helps educate people. It helps them have an example. And that can make a difference. And as each person who is making a difference tells their story, we change another person.

Everybody’s ALS story is different. We all start differently, and we all progress differently. Not knowing what tomorrow will bring can be a challenge. But we can’t dwell on that. Too many doctors say go home and prepare to die. I disagree. I say, “No! Go home and live until you die.” That’s what you need to do. As much as you can.

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

 

^aBased on RADICAVA ORS^® and RADICAVA^® IV prescriptions submitted in the US as of [May 2024]. Not independently verified.

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 receiving RADICAVA^® (edaravone) or taking RADICAVA ORS and can happen after your medicine has been given.
• 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 include bruising (contusion), problems walking (gait disturbance), and headache.

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 Mitsubishi 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 and RADICAVA ORS are registered trademarks of Mitsubishi Tanabe Pharma Corporation.

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