A Former Coach Living With ALS Gives Back to the Community
This is a sponsored post written by Eugene Pino in collaboration with MTPA
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. Eugene 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.
Eugene “Gene,” 69, Is a Former Teacher, Coach, and Athletic Coordinator
Ever since I can remember, my life revolved around education and sports. I spent 28 years working to keep kids active in sports in the Albuquerque Public School (APS) system. During that time, I coached football and basketball, went into administration, and was an Athletic Coordinator for the APS Athletic Department. In 1995 the mayor of Albuquerque insisted that sports be reinstated in middle schools across the area. As the athletic coordinator, I was able to help reinstate middle school athletics in 27 schools—something that had not been done since the 1970s.
In 2005, I retired as the Executive Director of the APS Foundation, which raised money for underfunded school programs and scholarships. Even though I retired, I stayed busy in the community. I served as the New Mexico Amateur Athletic Union Boys Basketball Chair, coached our youth, and was on the board for the New Mexico Activities Association and the New Mexico Sports Hall of Fame.
Learning About ALS and Getting Diagnosed
Every Monday I used to sign checks as part of my job fundraising for the APS Education Foundation, but I started having a difficult time doing it. My primary doctor sent me to a neurologist who thought I had an old neck injury from football. I had an MRI done, but it did not show any physical injuries to my spinal cord or nerves.
After that, I began experiencing weakness in my right arm and my speech was becoming slurred, so I was sent to the University of New Mexico Neurology and ALS clinic. They performed a series of tests, and on March 8, 2011, I was diagnosed with ALS. I’ve been active all my life, so when I heard the news I was overwhelmed with emotion and cried like a baby. My wife had to come pick me up and drive me home.
For the first five years after my diagnosis, I was still able to work and drive. Since then, my ALS has progressed and now I use a walker and power wheelchair. Although my legs are strong, I’m losing the use of my hands, and my voice is very weak. I eat food with Obi Robot feeder and have a feeding tube for extra calories. I’m lucky to have my wife as my primary caregiver, which gives my kids the time to live normal lives.
Starting Treatment With RADICAVA ORS® (edaravone)
When I heard RADICAVA® was available in an oral form, I was overjoyed to learn that there was a treatment I could take at home that could possibly slow the progression of ALS. I talked with my doctor about it and thankfully, he was on board with me switching, so I started treatment with RADICAVA ORS® in 2022.
In the clinical study, RADICAVA® slowed the loss of physical function as measured by the ALS Functional Rating Scale–Revised (ALSFRS-R) by 33% versus placebo. At 24 weeks (about 6 months), patients who did not receive RADICAVA® (66 patients) declined more rapidly in physical function, having lost an average of 2.49 points more than those who received RADICAVA® (68 patients). 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. This is Eugene’s experience and does not necessarily represent the experience of others.
RADICAVA IV and RADICAVA ORS are indicated for the treatment of amyotrophic lateral sclerosis (ALS).
Do not receive RADICAVA (edaravone) IV or RADICAVA ORS (edaravone) 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.
Learn more about ALS and how RADICAVA ORS® may help you.
Cherishing Each Moment
Even though ALS has changed my life, I don’t get depressed. I’m fortunate that my disease progression has been very slow since I was diagnosed, so I’ve been able to spend time with my family and friends, and take an active role in the New Mexico ALS chapter to raise funding that benefits their educational and outreach programs.
Having ALS has also changed my mindset. Now, I live in the moment and don’t worry about tomorrow. This helps me save my energy for things that I want to do like taking RV trips, vacations, and working on my bucket list of sports events and road trips. My most memorable excursion to check off my bucket list was taking a long RV trip to watch the Michigan football game and visit my twin brother at his lake house.
As far as my story with ALS goes, I hope that other people with the disease see it and can learn from my experiences. ALS may change how you live but there’s still plenty to look forward to.
Learn more about participating in the Share Your Story program at ShareYourALSStory.com.
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).
For more information, including full Prescribing Information, please visit Radicava.com.
RADICAVA and RADICAVA ORS are registered trademarks of Mitsubishi Tanabe Pharma Corporation.
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