This is a term that for general purposes we use to describe appropriate interactions/actions with and to others. Modesty is frequently associated with dignity, when discussed. We are all familiar with it’s use under this premise. I would like to share another aspect of this term as it applies to ALS, end of life.

Although this dignity or dignified end of life concept has been present throughout all human history, it continues to be taboo. My question is, Why?

Death is very much an integral aspect of life itself. Yet as a society we shy away from this very real and unavoidable eventuality. Fear, narcissism, ego and many other factors feed and add life to the taboo public perception.

Recently the ALS community experienced the loss of two incredible human beings, who defined their dignity. I am not here to discuss anything other than the strength and courage needed to make such a truly personal and difficult decision.

Take a moment to reflect on the many hours of reflection, conversations with loved ones and the tears shed leading to this. Just imagine.

Given that ALS takes everything, dignity is totally dependent on others. I ask that you also take to heart the amount of love and respect for the individual by the family. That is true and selfless love, which is essential for dignity.

I won’t even venture to say “ I can imagine “ the discussions had. Ultimately each person defines their dignity and we who remain cherish their lives and memories, with DIGNITY.

J. Reyes


sponsored#MTPApartner I’m proud to be partnering with Mitsubishi Tanabe Pharma America (MTPA) to help newly diagnosed pALS and cALS navigate their diagnosis.


Imagine having your life turned upside down with the words, “you have ALS”. Imagine losing everything that gave you security, comfort, and support. This, in fact, happens to many people dealt a terminal diagnosis, abandonment. Losing your entire support network, all of it! It’s an insidious occurrence around the world, hidden in plain sight.

What then? Where to turn?

ALS has a tendency to do one of two things; rally your family and friends around you or bring the worst out in them. This is just a simple fact of life. Sadly, there may be many pALS who are abandoned and left to navigate this journey alone. How can these individuals embrace their new challenge as their body and family turn against them?

There simply is no solution. Each case requires a tailored approach for that pALS’ needs. Some resources are available through ALS clinics, various nonprofits and government agencies.

Considering the degree of care needed may be a challenging experience depending on what resources are available. I have found that in these challenging instances, it is the ALS community that must come together and embrace the pALS to show support.

Personally, I am blessed to have a very supportive family. I can’t fathom living with ALS and also being abandoned. My heart goes out to anyone dealing with this very situation.

Having experienced a medical emergency a year ago, I experienced firsthand the sense of helplessness. Unable to move and completely dependent on others. Given the current state of health staff shortages, it took some convincing to allow my family to help me. Without them I would have been miserable.

It’s not just a matter of who you embrace but who embraces you – “Embrace Your Now!”

MTPA offers the JourneyMateTM Support Program featuring a JourneyMateTM Resource Specialist who can help you and your loved ones learn about ALS and RADICAVA ORS® (edaravone) or RADICAVA® (edaravone) IV as a treatment option. Call toll-free 1-855-457-6968 or visit https://www.radicava.com/patient/journeymate/.

Interested in sharing your RADICAVA ORS® or RADICAVA® IV experience with others? MTPA offers the Share Your Story program to allow real people to share real stories. To learn more, and for a chance to share your story, call a JourneyMate Resource Specialist toll free at 1-855-457-6968 sign-up at https://www.ShareYourALSStory.com.

This information is intended for U.S. audiences only 18 years of age and older. RADICAVA ORS and RADICAVA are available by prescription only. Talk to your doctor.
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 http://www.fda.gov/medwatch or Mitsubishi Tanabe Pharma
America, Inc. at 1-888-292-0058.

RADICAVA and RADICAVA ORS are indicated for the treatment of amyotrophic lateral sclerosis

For more information, including full Prescribing Information, please visit http://www.RADICAVA.com.

Broken Hearts Keep BeatingBroken People Keep Fighting

We live surrounded, orbited by those that come into our lives. Most on the periphery, some fly close, even less shift our trajectory. But a few collide with us, forever changing us. Their impact leaving a lasting and enduring impression. When they leave us it hurts, yet we carry on, we must.

Recently we, our ALS family, lost two such persons. Each having left an incredible void in their families lives. Both fierce advocates, more importantly fierce mother’s . Both willing to fight not just for themselves, but for everyone afflicted by ALS.

Sandy, you altered the ALS research landscape by demanding and implementing accountability. Allowing those living with and affected by ALS to contribute directly to the impenetrable research machine. Your voice and presence never diminished by your failing body; when you spoke we hung on to every labored word of yours.

Taya, we met over zoom, and your energy and smile won us over. As we came to know you it soon became glaringly obvious, you were a force of nature. A fierce ALS advocate in your own right in Canada, and an avid fan of the Toronto Blue Jays. We were always in awe of your efforts and your candid perspectives.

I know my life is better for having met both of you. So with broken hearts and broken bodies we keep fighting. Our hearts continue beating with a broken cadence, having lost two resounding notes in our ALS song.

J Reyes