About

Team Justin was created in 2004 by a group of friends in San Diego to support and honor their friend Justin Whitehead who had recently been diagnosed with ALS (Lou Gehrig’s disease). The first event was the Rock & Roll Marathon in San Diego in June of 2004 with 15 runners. Shortly thereafter Team Justin spread into Austin, Justin’s home and home to countless supporters. In Austin there have been several fundraisers and Team Justin participated in two Freescale Marathons. Dallas soon joined the ranks and held fundraisers of their own. We have grown to over 150+ members and in February of 2006 officially became non-profit. Our current focus remains to raise awareness and money for ALS as well as support the fight for an ALS cure.

Just what is ALS and what does it cost?

What is ALS?

Amyotrophic lateral sclerosis (ALS)is a progressive and, ultimately, fatal disease in which the patient’s muscles gradually weaken and deteriorate (atrophy).

ALS usually begins in one region of the body and spreads to adjacent regions until the entire body is involved. Sometimes, it may appear to begin everywhere at once. As the muscles waste away, they often become stiff (spastic). The amount of wasting and stiffness varies from patient to patient. The muscles responsible for speaking, swallowing, and breathing are also affected by the disease. Unless they elect to receive permanent mechanical breathing support, patients die when the muscles used for breathing can no longer do their job. This happens, on the average, three to five years from the onset of the disease. Some patients, therefore, survive more than three to five years. Stephen Hawking, the British physicist who developed ALS as a young man, has lived with it for over 25 years: he is a rare exception, in more ways than one.

What causes ALS?

It is not known why motor neurons die in patients with ALS. Genetic, environmental, and age-related factors have been considered. While it is accepted that carrying the gene for familial ALS ultimately causes ALS, no other cause has been confirmed when checked with scientific precision. Patients occasionally relate the onset of their disease to specific events, such as accidents or falls. However, based on what we know about the rate at which ALS progresses, the disease must have been present in the patient’s nerve cells even if not clinically apparent before the event in question. Careful studies with comparison groups (controls) have not shown an increased frequency of accidents or falls before disease onset in patients with ALS. It is likely that there may be many factors causing ALS leading to a common outcome of progressive loss of motor neurons.

Treatment for ALS

Education

Education is the key to patient empowerment and patient autonomy. Education is an ongoing interactive process. It is impossible to learn everything about ALS in a single day. Even if many of the consequences of the disease are discussed at the time the possibility is first raised, it is usually not possible to cover all possible outcomes at that time

Treatments to slow the progression of ALS

Nineteen ninety-five was a landmark year in ALS because there were three treatments which claimed to have slowed disease progression in ALS as the result of well-designed, double-blinded, placebo-controlled studies. Of these, only one, riluzole, showed efficacy in two such studies, which led to approval by regulatory agencies in the US, Europe, and elsewhere. The benefits of riluzole are modest.

What does it cost a family?

ALS is a very expensive disease. These are some of the cost associated with ALS:

  • $700/month- The only FDA approved medication, Rilutek, for ALS
  • $25,000- power wheelchair
  • $30,000/year- home health aid for 10 hours a day
  • $250,000/year- skilled nursing
  • $40,000- home remodeling
  • $30,000-50,000- adaptive vehicle
  • $10,000-15,000-communication device
  • $2000- Hoyer lift device

Insurance companies consider some of these services and equipment as “convenience items”, rather than things that are medically necessary.Consequently, families of ALS patients are faced with a grim financial situation. It is difficult, if not impossible, for any family to bear the financial burden of this disease without assistance.

 

Information above Borrowed from:
Loma Linda University Medical Center