Guest Post: ‘I Would Still Serve My Country’

By Russell Mikunda

Before being diagnosed with ALS, I had no idea that veterans are twice as likely to be diagnosed with the disease. Even knowing what I know now, I would still serve my country.

I was in the Navy for eight years, reporting for duty on three different ships during my time in the service. During my second deployment, we were off the coast of Beirut when things started to heat up during the early 1980s.

I’m very proud to be a veteran. The VA (Department of Veterans Affairs) takes good care of me. But sometimes I worry that everybody with ALS doesn’t get that same high level of treatment I do.

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Certified Treatment Center of Excellence Spotlight: ALS Treatment and Research Center at UCSF

Our national network of 63 Certified Treatment Centers of Excellence (CTCEs) provides robust, expert multidisciplinary ALS care and services in a supportive atmosphere, emphasizing hope and quality of life. Studies show attending a multidisciplinary clinic can extend survival, increase quality of life, and improve access to potential therapies.

CTCEs bring together a team of health care professionals specially trained to address the needs of people living with ALS, allowing them to receive care from each discipline during a single visit.

Teams typically include a neurologist, a physical therapist, an occupational therapist, a respiratory therapist, a nurse, a dietitian, a speech-language pathologist, a social worker, a mental health professional, and a liaison from The ALS Association.

Thanks to donations from the ALS Ice Bucket Challenge, The ALS Association has increased the number of CTCEs, as well as the size of its annual grants to each one. This is the third in an ongoing series of CTCE spotlights.

Continue reading Certified Treatment Center of Excellence Spotlight: ALS Treatment and Research Center at UCSF

Tiglutik – Thickened Liquid Riluzole – Receives FDA Approval to Treat ALS

Yesterday, ITF Pharma, Inc. announced that Tiglutik™, the first and only thickened liquid form of riluzole, was approved by the FDA for the treatment of ALS. This formulation contrasts with the oral pill form of riluzole that has been on the market for ALS for more than 20 years.

This thickened liquid form of riluzole should help individuals with swallowing difficulties. Approximately, 80 percent of people with ALS develop difficulty swallowing because of gradual weakness and paralysis in the muscles of the face and throat, called bulbar muscles.

In ALS, muscle weakness in the face and throat can lead to swallowing issues called dysphagia, along with problems with chewing, salivation, talking, and drinking. This often results in unwanted weight loss, issues taking oral medications, and in some cases, choking and aspiration, which is when food or liquid go down the wrong tube and into the lungs.

To counteract difficulties swallowing, many people with ALS end up crushing their pills. When medication is not taken as prescribed, its effect may decrease. Tiglutik provides an alternative as a thickened liquid, which can be administered orally twice-daily via a syringe. Its most common side effects are in line with established side effects observed in oral riluzole.

Continue reading Tiglutik – Thickened Liquid Riluzole – Receives FDA Approval to Treat ALS

With ALS, Every Day Adds Up

Our Every Drop Adds Up campaign builds on the idea that people coming together for a common goal can make the impossible happen, just as it did four summers ago when the ALS Ice Bucket Challenge soaked the world. Every person helped, research project funded, story shared, discovery made, piece of legislation passed, and auction bid placed – it all adds up!

For people living with ALS and their caregivers and family, every day adds up.

ALS is a journey that begins months, even years, before a diagnosis. Because there’s no definitive test for ALS, doctors must run through a battery of tests, ruling out other potential syndromes, conditions, and diseases before making a diagnosis of ALS.

It’s a journey that, for many people diagnosed with ALS, continues through the five-month waiting period they qualify for Social Security Disability Insurance.

Continue reading With ALS, Every Day Adds Up

Certified Treatment Center of Excellence Spotlight: Crestwood ALS Care Clinic

Our Every Drop Adds Up campaign builds on the idea that people coming together for a common goal can make the impossible happen, just as it did four summers ago when the ALS Ice Bucket Challenge soaked the world. Every person helped, every research project funded, every discovery made, every piece of legislation passed, and every story shared – it all adds up!

Our national network of 62 Certified Treatment Centers of Excellence (CTCEs) provides ALS care and services in a supportive atmosphere, emphasizing hope and quality of life.

CTCEs are multidisciplinary centers that bring together a team of health care professionals specially trained to address the needs of people living with ALS, allowing them to receive care from each discipline during a single visit.

The care team typically includes a neurologist, physical therapist, occupational therapist, respiratory therapist, nurse, dietitian, speech-language pathologist, social worker, mental health professional, and liaison from The ALS Association.

Studies show the benefits of attending a multidisciplinary clinic include longer survival, increased quality of life, and improved access to potential therapies. Thanks to donations from the ALS Ice Bucket Challenge, The ALS Association has increased the number of CTCEs, as well as the size of its annual grants to each one.

This is the second in an ongoing series of CTCE spotlights.

Continue reading Certified Treatment Center of Excellence Spotlight: Crestwood ALS Care Clinic

Memory Boxes Help Kids Impacted by ALS Cope with Loss

Innovation plays a key role in The ALS Association’s fight to develop treatments and a cure for ALS and to empower people living with the disease to live their lives to the fullest. During June and July, we are celebrating some of the key innovations helping us change the nature of ALS forever.

A diagnosis of ALS takes its toll in many ways. The person living with ALS eventually loses the ability to move, eat, speak, and breathe. But the effects of this disease don’t end there. Witnessing a loved one’s experience and being a caregiver have profound effects on family members and children, too.

Thankfully, your support helps give hope and provide compassionate care.

For example, The ALS Association St. Louis Regional Chapter provides one-on-one counseling for kids of all ages affected by ALS. The chapter recently expanded the program by providing hand-carved Circle of Life Boxes to every child living with a person with ALS who is registered with the chapter.

These “memory boxes” are used as part of grief work and counseling to help capture feelings surrounding loss.

Continue reading Memory Boxes Help Kids Impacted by ALS Cope with Loss

The ALS Association Goes Above and Beyond to Provide Transportation Access

Innovation plays a key role in The ALS Association’s fight to develop treatments and a cure for ALS and to empower people living with the disease to live their lives to the fullest. During June and July, we are celebrating some of the key innovations helping us change the nature of ALS forever.

Your generosity supports the ALS community from every angle. Not only do your contributions help to further research for a cure, but they also strengthen advocacy and provide compassionate care to people living with ALS right now.

One aspect of care you may not have considered before is travel and transportation. ALS makes any kind of travel much more complicated, even local trips most of us take for granted, like going to the movies or visiting relatives.

To make sure our community gets services that enhance quality of life, The ALS Association provides guidance around travel while living with ALS as well as direct transportation resources.

The ALS Association Georgia Chapter recently went above and beyond to provide such support through access to reliable transportation. Their pioneering Paul B. Williams Transportation Program was launched on October 1, 2017, and has since fulfilled requests for non-emergency trips to ALS medical clinic appointments, as well as non-medical and personal trips.

Continue reading The ALS Association Goes Above and Beyond to Provide Transportation Access