ALS Awareness: Become an Agent of Hope
ALS Awareness: Become an Agent of Hope
An “Orphan” Disease that Needs Much More Knowledge & Funding
This year’s Agents of Hope Golf Tournament, hosted by ERA Team VP Real Estate, will be held August 23rd.
In May in the United States, we call attention to ALS Awareness. Our neighbors in Canada do the same in June. The ALS awareness campaign was created to heighten the understanding of ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig’s Disease). This campaign is recognized by the Centers for Disease Control and Prevention (CDC). During May, the American ALS Association leads a delegation of people with ALS, along with their caregivers and advocates to Capitol Hill to urge legislators to support measures to find treatments (there are few) and a cure (there is none).
ALS targets and damages the nerve cells in the brain and spinal cord. While there is no cure for this disease, medical marijuana proponents claim that it has helped slow its progression for patients with ALS. (marijuanadoctors.com) It usually strikes people between the ages of 40 and 70. However, Liz Krisanda, Executive Director of the Upstate NYS ALS Chapter, states that the youngest in the Upstate NY area is 18 and the oldest is mid-80’s.
Approximately 20,000 people in the U.S. have it at any given time. About 5,000 are diagnosed per year. The average life expectancy is 2 to five years. (Rare are the outliers like Steven Hawking - 55 years, diagnosed at 21 - living to 76, and U.S. Navy veteran Alfred Caffiero, known locally by many as co-founder, with Bill Hahn, of WNY Physical Therapy - 23 years, living to 84.)
Every 90 minutes someone is diagnosed, and someone dies. Only 10% have inherited ALS through a mutated gene, while 90% occur without family history. There is no cure, although there are presently 4 drugs currently approved by the USFDA which help control symptoms but do not increase life expectancy.
Symptoms include progressive loss of muscle control with ALS gradually prohibiting the ability to speak, swallow, walk, grasp objects, move, and breathe. It is difficult to diagnose and is usually done by ruling out all other diseases. Sadly, this can sometimes take precious months or years. Interesting fact: ALS affects military veterans who serve in peacetime or war, regardless of the branch of service or the war they served in. Studies are ongoing to discover the connection, which is also shared with elite athletes. Battles are also waging in Congress to get funding for widows and families of ALS vets through the Justice for Veteran’s Act
We are made aware of ALS every August when ERA Team VP Real Estate offices throughout the area sponsor the “Agents of Hope” Golf Tournament now in its 14th year. Bill Soffel from ERA explains that this started when he personally experienced the struggles his grandmother endured as she slowly succumbed to ALS and realized how little funding there is for research.
Thus far, the Agents of Hope Golf Tournament has raised over $150,000 for ALS research. Held at the Chautauqua Golf Club, Soffel stressed the importance of this funding and indicated that sponsors for the event are needed. If you are interested in becoming a sponsor for this worthwhile and fun event, stop into your local ERA office or contact Soffel at his office in Ellicottville at 716-699-4800 or on his cell at 716-490-2596. Get involved. It’s a good thing!