ALS Awareness Month 2023: Whatever It Takes to Find A Cure

Suzanne H.

Suzanne H.

Sales and Marketing

On May 9, 1992, the United States (US) Senate passed joint resolution 174 designating the month of May as National Amyotrophic Lateral Sclerosis (ALS) Awareness Month. The celebration raises awareness of ALS, a rare and debilitating neurodegenerative disease affecting brain and spinal cord nerve cells.

The ALS Association was established in 1985 to support individuals and caregivers living with ALS while raising funds for continued research and finding a cure. Their motto is “Whatever It Takes,” and their goal is for ALS to be a livable disease by 2030.

What is ALS?

ALS was first identified by French neurologist Jean-Martin Charcot in 1869. He is often called “the father of French neurology,” and ALS is still referred to as Charcot’s disease in France.

French Neurologist

ALS is progressive in nature, impacting muscles and nerves to the point where an individual loses their ability to speak, breathe, swallow, and move. ALS is usually difficult to diagnose due to its similarities to other diseases. Physicians must often run many tests to rule out other conditions. While there currently is no cure for ALS, available treatments can slow the disease’s progression.

Symptoms of the disorder commonly present between the ages of 40 and 70, with only 10% of the cases being genetic in nature. On average, the life expectancy for someone with ALS is just two to five years from their diagnosis. English physicist Stephen Hawking, however, defied the odds. He lived 55 years with ALS after his diagnosis at the age of 21.

What is Lou Gehrig's Disease?

Amyotrophic Lateral Sclerosis is also called Lou Gehrig’s Disease, named after a famous baseball player for the New York Yankees. Henry Louis (Lou) Gehrig signed with the Yankees in 1923 and led the team to six World Series. He also set a record for the most consecutive games played. His record would stand until Cal Ripken, Jr. surpassed Gehrig in 1995.

After a struggling 1938 season, Gehrig removed himself from a game in May 1939 when he felt something was physically wrong. Gehrig was diagnosed with ALS in June of that year and was forced to retire from the game he excelled in.

Lou Gehrig Appreciation Day was held by the Yankees on July 4, 1939. Here Gehrig gave a speech addressing his diagnosis and calling himself the “luckiest man.” Sadly, Gehrig died just two years later at the young age of 37. His popularity gave voice to a disease many had not heard of prior to his diagnosis.

The ALS Awareness ribbon is white with navy pinstripes in honor of Gehrig and his uniform. In 2021, Major League Baseball announced Lou Gehrig Day would be celebrated across the League each June 2. The day is used to honor Gehrig’s legacy and raise awareness of ALS.

Gehrig's Speech on Lou Gehrig Appreciation Day, July 4, 1939

“For the past two weeks, you have been reading about a bad break. Yet today, I consider myself the luckiest man on the face of the earth. I have been in ballparks for seventeen years and have never received anything but kindness and encouragement from you fans.

When you look around, wouldn’t you consider it a privilege to associate yourself with such fine-looking men as they’re standing in uniform in this ballpark today? Sure, I’m lucky. Who wouldn’t consider it an honor to have known Jacob Ruppert? Also, the builder of baseball’s greatest empire, Ed Barrow? To have spent six years with that wonderful little fellow, Miller Huggins? 

Lou Gehrig

Then to have spent the next nine years with that outstanding leader, that smart student of psychology, the best manager in baseball today, Joe McCarthy? Sure, I’m lucky.

When the New York Giants, a team you would give your right arm to beat, and vice versa, sends you a gift – that’s something. When everybody down to the groundskeepers and those boys in white coats remembers you with trophies – that’s something. When you have a wonderful mother-in-law who takes sides with you in squabbles with her own daughter – that’s something. When you have a father and a mother who work all their lives so you can have an education and build your body – it’s a blessing. When you have a wife who has been a tower of strength and shown more courage than you dreamed existed – that’s the finest I know.

So I close in saying that I might have been given a bad break, but I’ve got an awful lot to live for. Thank you.”

New Guidelines for Rare Neurodegenerative Disease Clinical Trials

The United States Food and Drug Administration (FDA) is the government agency responsible for public health safety in America. Its reach includes overseeing all clinical trials in the United States.

A new Action Plan for Rare Neurodegenerative Diseases including Amyotrophic Lateral Sclerosis (ALS) was recently released by the FDA. This five-year initiative focuses on improving and extending the lives of people living with rare neurodegenerative diseases by advancing the development of safe and effective medical products and facilitating patient access to novel treatments.”

 The main strategies of the plan include:

  • Establishing the FDA Rare Neurodegenerative Diseases Task Force (FY 2022)
  • Establishing the public-private partnership for rare neurodegenerative diseases (FY 2022)
  • Developing disease-specific science strategies (FY 2022 – FY 2026)
  • Leveraging ongoing FDA science efforts 

This new document shows the FDA’s continued commitment to a collaborative research environment focused on getting new therapies to market safely and in a timely manner. As discussed above, the symptoms of ALS progress very quickly, so time is of the essence for these very ill patients.

Recently, there have been some promising advancements in ALS research:

Caring for a Loved One with ALS

  • More than 5,000 people are diagnosed with ALS in the US annually
  • Up to 15,000 Americans are currently fighting the disease
  • Every 90 minutes, someone is diagnosed with ALS, and someone passes away from complications related to the disease

As their condition deteriorates, an individual with ALS will require a greater amount of care, eventually needing support around the clock. This level of care can be emotionally and physically taxing for ALS caregivers, as shown in this poignant video.

The High Cost of ALS Care

In the US, the cost of caring for a loved one with ALS can be debilitating. These costs can be compounded if the individual has inadequate or no health insurance. Families can face huge bills for:

  • Doctor and specialist visits
  • Hospital stays and in-home medical care
  • Breathing and feeding apparatuses
  • Medications and treatment options

With funds and resources already being stretched, it may seem impossible for a patient and caregiver to participate in a clinical trial incurring additional challenges and costs.

How Patient Concierge Services Support Those Living with ALS

Pharmaceutical sponsors and clinical research organizations (CROs) conducting trials for diseases like ALS should be aware of this new action plan and how it pertains to their participants. Protocols for these studies should proactively account for the rapid mobility decline common with ALS. Travel and accommodation options should be strategically planned in advance of these changes. A patient may begin the study with few visible symptoms of the disease but may need to use a wheelchair and require round-the-clock medical care by the end of the trial. Sponsors and CROs should include the services of a patient concierge company to ensure the highest quality patient experience throughout the entirety of the study.

Patient concierge services remove the emotional, financial, and logistical burdens associated with clinical trial participation. Clincierge was born of the hospitality industry, with our beginnings more than 28 years ago in the corporate meetings and events space. Our expertise lies in supporting patients with the highest level of support needs, like those in rare disease, oncology, and neurology trials.

Improving ALS Trial Retention Rates and Outcomes

Individuals experiencing significant cognitive and mobility issues arising from a debilitating condition like ALS can better concentrate on the trial’s treatment path when the many burdens of trial participation are removed. Our coordinators provide the one-on-one high-touch emotional support needed by patients and their caregivers for the duration of the clinical trial. These individuals often remain a form of support long after the study has been completed.

Ways to Support ALS Awareness Month

There are many ways to get involved and support the ALS community during ALS Awareness Month.

Learn more about the mission of the ALS Association.

Learn how our patient concierge services can benefit your clinical trial participants.

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Voice of the Patient Research

View the results of our recent research to explore how effective patient support strategies can reduce barriers, increase retention, and improve outcomes in rare disease clinical trials in our latest eBook.

Voice of the patient