Photo: 15-State Bicycle Journey. Source: News 12 Brooklyn.
To raise awareness and funding for muscular dystrophy, a 4,200 mile bike ride was organized that started in Seattle, Washington and ended at the Barclays Center in Brooklyn, New York, with a total of 15 states being crossed by the end. The event consisted of roughly 12 cyclists, and was made possible by Chris Carrino's foundation, known as the Chris Carrino Foundation for Facioscapulohumeral Muscular Dystrophy.
Chris Carrino is best known as the voice of the New York Nets, but he has also been the voice for other sports teams. But, what others may not know about him is that he suffers from facioscapulohumeral muscular dystrophy. He was diagnosed with the disease at the end of his college career, but since then, he has worked tirelessly to raise awareness and help find a cure for this genetic neuromuscular disorder.
The ultimate goal was to bring funding for facioscapulohumeral muscular dystrophy research, as well as provide an undeniable sense of community for the muscular dystrophy population. Upon the bicycle journey’s completion, Carrino had said, “Man, to see it almost a year later come to fruition is pretty amazing.” Following this, Carrino mentioned that from the time his foundation was started seven years ago, over 20 companies specializing in pharmaceuticals have began searching for treatments to combat the symptoms that are tied to facioscapulohumeral muscular dystrophy.
Chris Carrino was impressed by the attention the biking fundraiser had brought, and ultimately hopes that it will have done well in providing a sense of connectedness for those battling against the hardships that come with facioscapulohumeral muscular dystrophy. Carrino himself has had a phenomenal announcing career, and still continues to announce despite his diagnosis.
Through his career, Carrino has announced for various sports disciplines and teams, of which have included the 2008 Summer Olympics basketball coverage, the Los Angeles Angels, the New York Giants, as well as the New York Nets.
According to Carrino’s foundation site, they are a, “non-profit organization working towards improving the lives of those affected by facioscapulohumeral muscular dystrophy” and consist of a, “independent, volunteer foundation providing funding to research scientists in the hope that stimulating scientific research in the field of FSHD [facioscapulohumeral muscular dystrophy] will lead to an effective treatment and eventually a cure.”
What is muscular dystrophy?
Muscular dystrophy is primarily characterized by a distinct impact on a patient’s muscle mass and their decreased ability to use such muscles. The disorder progressively worsens over time, with cases that result in the need for a wheelchair and even death. At this current time, muscular dystrophy does not have a definite cure, and is estimated that up to 20,000 new cases are reported each year. The disorder is most commonly seen in males, and is classified by a variety of categories, each with distinct traits.
The different types of muscular dystrophy include two main categories, of which include Becker muscular dystrophy and Duchenne muscular dystrophy. The distinct difference between these two types of muscular dystrophy are that Duchenne muscular dystrophy is historically diagnosed at a younger age than Becker muscular dystrophy.
While the two classifications of the disorder differ, the symptoms are quite similar. These symptoms can include an altered way of walking for the patient, a higher likelihood of falls, struggles getting up from either the seated or lying position, difficulties learning, pain in the muscles, muscles stiffness, waddling gait, as well as problems with either running or jumping.
While muscular dystrophy is most commonly recognized by the two categories mentioned above, a variety of other classifications of the progressive disorder exist. These types of muscular dystrophy include the following: Myotonic muscular dystrophy, facioscapulohumeral muscular dystrophy, congenital muscular dystrophy, and limb-girdle muscular dystrophy. The type Chris Carrino was diagnosed with will often first show symptoms that include muscular weakness in both the face and shoulders. One of the distinguishing factors of this type of muscular dystrophy includes a prominent protrusion of a patient’s shoulder blades, similar to that of a bird’s wing, when lifting one’s arms. While facioscapulohumeral muscular dystrophy can occur at a relatively young age, some cases can become prevalent as late as 40 years of age.
Every type of muscular dystrophy has a slightly different root cause, however every type is the result of damage to the genes that are ultimately responsible for developing special proteins that serve as a protective barrier for the body’s muscles. Muscular dystrophy stems from damage that is caused by one of these genes becoming defective.
When a patient is being examined to determine whether or not they do in fact have a form of muscular dystrophy, a doctor will first begin by looking at the patient’s respective medical history and also conduct a physical examination. Following this, a doctor could subsequently recommend a series of tests to further assess the prevalence of muscular dystrophy in a patient. These tests can vary depending on each scenario, but can include heart-monitoring tests, lung-monitoring tests, enzyme tests, genetic testing, electromyography, as well as a muscle biopsy.
If a patient undergoes these tests and does in fact have some form of muscular dystrophy, a variety of treatment options exist that help to slow some of the symptoms associated with muscular dystrophy. In terms of medication, the most common will include forms of corticosteroids and certain heart medications. Corticosteroids serve the purpose of bettering one’s muscle strength, and can help to slow the overall development of muscular dystrophy.
As far as the recommended heart medications, these play the role of combating the negative effects that muscular dystrophy can cause with a patient’s heart. Aside from medications, patients are also able to use from of physical therapy and braces that help to slow the progression of what are known as contractures, which consists of the “a shortening or distortion of muscular or connective tissue due to spasm, scar, or paralysis of the antagonist of the contracting muscle,” according to Dictionary.com.
The future for patients diagnosed with muscular dystrophy
Organizations such as the Chris Carrino Foundation for facioscapulohumeral muscular dystrophy serve as the very basis for a bright future for affected patients. These associations help to bring awareness and are the driving force for the increase in research efforts around the world. With events such as the one mentioned above, the general population is better able to understand the many difficulties that muscular dystrophy patients must face each day.
As a result, these patients are able to receive the necessary inspiration they need to face adversity and combat their disorder. These efforts made each day by muscular dystrophy patients and their loved ones help anyone, no matter what their struggle may be, to appreciate the gift that is life and take advantage of opportunities that are ever-present in everyday life.