Dallas Forshew, Manager of Clinical Research at Forbes Norris MDA/ALS Treatment and Research Center at California Pacific Medical Center provided an encouraging and informative update on Amyotrohpic Lateral Sclerosis, ALS research. The most recent was last Friday's FDA approval of Radicava, a medication for the treatment of the familial form of ALS. Along with Parkinsons and Alzheimers Disease, ALS is a disorder of voluntary muscle neurons. Unable to sustain growth and regeneration, the nerves gradually loose their ability to stimulate muscles and the muscles atrophy. In the United States today, 12-15,000 are diagnosed with ALS. It affects more men than women, and the average age of diagnosis is 55. Survivability is 3-5 years. Dallas emphasized that ALS is a treatable disease, with four interventions greatly improving quality of life: !. A multi disciplinary plan of care, including medical, emotional and spiritual support. 2. Nutritional attention. 3. Non-invasive ventilation, such as CPAP: Continuous Positive Air Pressure apparatus. 4. The medication Riluzole. It has demonstrated a 10% increase in survivability length. Last week's FDA announcement of Radicava was very welcome news for ALS treatment followers. It is the first newly approved drug since 1995, when Riluzole was first introduced. Two Sunrise members Rolf Wessman, and Olin Leasher's wife Judy have been diagnosed with ALS. Rolf was diagnosed over 5 years ago and is living witness to the four way approach to treatment, particularly nutrition. Using his analytical skill and culinary finesse, Rolf has gained 19 pounds. Judy, more recently diagnosed, actively participated in the recent ALS walk with Olin and several other Sunriser's and supporters in helping raise of $105,000 in the Sonoma County walk.
Olin is thanked with a warming hug by Dallas following his Ice Bucket Challenge immediately after her presentation. Dallas' opening statement "hope through research" gives confidence to the challenges Judy, Rolf, their families and friends share. For another inspiring story within our ALS family, check out Olin's chilling Ice Bucket challenge in this week's bulletin!
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