After the Ice Melts, What Next?



Photography provided by the ALS Central & Southern Ohio Chapter

During the summer of 2014 the ALS Ice Bucket Challenge went viral on social media, bringing much needed awareness to Amyotrophic Lateral Sclerosis, more commonly known as ALS or Lou Gehrig’s disease, a terminal illness that has perplexed researchers for nearly 145 years. The cause of this neurodegenerative disease, discovered in 1869 by French neurologist Jean-Martin Charcot, remains unknown to researchers today.

 

What Is ALS? 

Charcot, also referred to as the Father of Neurology, is known for providing complete clinical descriptions and pathological changes associated with a variety of neurological diseases such as Parkinson’s and Multiple Sclerosis. His discoveries allowed for precise classification between diseases. It was through careful observation and laboratory work featuring the pathophysiology that brought Charcot to the discovery of ALS. Although several molecular and genetic discoveries have resulted in a greater understanding of this disease, Charcot’s original descriptions of ALS have remained virtually unaltered.

American baseball hero Lou Gehrig of the New York Yankees first brought national and international attention to the disease in 1939 when his major league baseball record of 2,130 consecutive games played came to an end, and he was soon diagnosed with ALS. Baseball fans were stunned to see the 36-year-old legend walk away from the game he loved. More than 62,000 fans joined the 1927 and 1939 Yankees teams in honoring Gehrig on July 4, 1939 at Yankee Stadium. There wasn’t a dry eye in the stadium as Gehrig stood on the field. Two years later, the nation mourned Gehrig’s death on June 2, 1941.

Each year 5,600 lives are changed by an ALS diagnosis in the United States. The disease strikes those in their 20s and 30s, but most commonly develops in people between the ages of 40 and 70. The disease attacks both the upper and lower motor neurons, causing degeneration throughout the brain and spinal cord. Symptoms of damage to the upper motor neurons include stiffness, muscle twitching and muscle shaking. Patients with damage to the lower motor neurons experience muscle weakness and muscle shrinking. General symptoms include tripping, stumbling, loss of muscle control, loss of strength in the hands and arms, difficulty speaking, swallowing, breathing and chronic fatigue.

Weakness in the hands, feet, arms and legs are among the first symptoms. As the disease progresses symptoms worsen, often leading to the inability to speak, walk, swallow or move.

The majority of patients (90 percent) with adult-onset ALS have no family history of the disease. This form of the disease is known as sporadic ALS (SALS). It attacks previously healthy adults, making it a disease that can strike anyone at any time. Although it is likely that there is a genetic disposition involved, SALS is not inherited.

The disease is only hereditary in about 10 percent of all cases. This rare form of the disease is commonly called familial ALS (FALS). There are families who can document 20 members over only two to three generations, who have died of ALS.

The cause of ALS is only partially understood. Researchers are looking at genetic mutations that cause damage to motor nerve cells as well as a long list of environmental factors that can interact with genes to cause or contribute to the disease.

 

The ALS Ice Bucket Challenge Goes Viral 

ALS vaulted into the limelight last summer when the Ice Bucket Challenge phenomenon became a viral sensation on social media worldwide. The concept was simple: Individuals videotaped themselves as they poured a bucket of ice water on their heads and then issued a challenge to others to do the same. Those challenged were given 24 hours to accept or forfeit by making a donation. The ALS Association was the recipient of many of these donations.

The ALS Ice Bucket Challenge benefited the ALS community on both a national and local level. The ALS Association, with 38 chapters throughout the United States, is dedicated to “Leading the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig’s disease and their families to live fuller lives by providing them with compassionate care and support.”

Collectively, the national office and the ALS chapters received a total of $115 million dollars in donations related to the Ice Bucket Challenge. So far The Association has announced that it will triple its investment in ALS research to ensure the most promising research continues to be funded.

Locally, the Central & Southern Ohio Chapter has benefited tremendously from the challenge. The local organization is responsible for providing support for families and patients living in 56 counties throughout the state, including those in Cincinnati, Dayton and Columbus.

“We have been impacted in two very positive ways by the Ice Bucket Challenge. First, so many more people know about ALS now than before. This is important to us because we work on a daily basis to bring attention and awareness to the disease and how it impacts people,” says Marlin Seymour, executive director of The ALS Association Central and Southern Chapter. “Before the Ice Bucket Challenge we estimated that approximately half of the general public were familiar with ALS or had ever heard of ALS. Now, I’d say that 95 percent of the people we meet are at least familiar with the name of the disease. So many people who were involved in the Ice Bucket Challenge took the time to look it up on the Internet and learn something about it. We’re grateful for that. The awareness has been tremendous. There’s no way we could possibly have paid to get this level of awareness.

“The second way we have been positively impacted by the Ice Bucket Challenge is through the wonderful increase in donations. Thousands of people who had never supported our chapter chose to make a contribution to support our work of serving people with ALS and their families. And hundreds of other people chose to participate in our Walk to Defeat ALS® event in September and raised money that way.”

 

The Community Takes the Reins 

Support didn’t stop as the summer came to an end. Each fall since 2001 the Central & Southern Ohio Chapter has hosted the Walk to Defeat ALS in Cincinnati, Columbus and Dayton. In the past the walk was predominantly attended by those who have lost loved ones to ALS or have a loved one living with ALS.

“Many who previously lost loved ones to ALS and had formed a walk team and raised money years ago, but had not participated recently, returned this year with a re-energized and renewed commitment to help. Hundreds of people who had not previously been involved made donations to walk teams and joined in on walk-day, resulting in record numbers of participants and funds raised. For example, we had nearly twice as many walkers and almost doubled the contributions from last year!”

The Walk to Defeat ALS in Cincinnati hoped to raise $315,000 this year. After the donations were totaled the walk exceeded expectations by raising more than $561,000 – an increase of more than $246,000. The walk is the organization’s biggest fundraiser of the year.

In addition to the annual Walk to Defeat ALS, there are a number of ways to support The ALS Association Central & Southern Ohio Chapter long after the ice has melted.

Each July, the chapter hosts Strike Out ALS Day with the Cincinnati Reds. Guests can get involved by purchasing tickets to the game directly through the chapter. In March, local residents can help the organization by attending the annual Cincinnati International Wine Festival. Through the festival guests are not only supporting The ALS Association Central & Southern Ohio Chapter, but other area non-profits as well.

Over the years the Central & Southern Ohio Chapter has received support from several Cincinnati-based companies that have been touched by the disease.

For a number of years the HoneyBaked Ham Company has sup- ported the Central & Southern Ohio Chapter. For CEO Craig Kurz, supporting The Association is more than just a good deed – it is a way to honor his grandfather and founder of the company, Harry Hoenselaar, who passed away from ALS in 1974.

“ALS is something that is very near and dear to my heart. After losing my grandfather, Harry J. Hoenselaar, to ALS, my entire family has become dedicated to helping find a cure for this disease. The HoneyBaked Ham Company was my grandpa’s dream – a dream cut short by ALS at the age of 66. As a family-owned business, funding patient services for those living with ALS and supporting ALS research have become a priority for The HoneyBaked Ham Company. We are proud to have been among the highest corporate sponsors of the Walk to Defeat ALS every year since its inception in 2001. We are glad we are able to impact the work of The ALS Association and make a genuine difference for patients, while giving them a reason for hope,” says Kurz. 

 

If you or someone you know has been diagnosed with ALS, please contact The ALS Association Central & Southern Ohio Chapter. Being diagnosed with ALS is a journey that no one should go through alone. Let the chapter help you find the support and comfort you need.

 

For more information on the Walk to Defeat ALS, visit www.walktodefeatals.org.

ALS Association Central & Southern Ohio Chapter is located at 1170 Old Henderson Road, Suite 221, Columbus, OH 43220. You can reach them at 866.273.2572 or visit their website at www.alsohio.org.