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[embed]http://www.youtube.com/watch?v=yMoJlz4h1-E[/embed]ALS Ice Bucket Challenge

British man flies to Richmond every two weeks for ALS treatment

A man from England flies more than 3,000 miles every two weeks to Richmond hoping a clinical trial can help him live longer as he battles amyotrophic lateral sclerosis disease. Adam Ball, 31, of Manchester, England, is the only international patient taking part in the trial at VCU Medical Center as researchers try to find a cure for Lou Gehrig’s Disease. Ball was diagnosed in October with ALS, and for the past three months Ball has taken part in the clinical trial at VCU. It’s required him to take a pill a few times every day, as part of the first phase. Ball and his doctors hope findings from this trial will slow down the progression of the disease. 

Preliminary research shows the drug, Radicava, used in the trial, has been shown to slow the decline of physical function by 33-percent. While Ball’s appointments are every two weeks, he will soon only have to come once a month when he moves into another phase of the trial. The flights every two week for treatment aren’t cheap. Ball has dipped into his life savings to afford these flights, but thanks to the Harper’s Hope Foundation the equipment he needs has been taken care of. Ball also has support from friends and even strangers overseas. 

Ball usually arrives a day or two before his treatment, and then travels back to Manchester the following day. According to VCU Health System, only one drug, called Riluzole, is currently licensed in the UK. Currently, VCU Health treats more than 150 ALS patients, however Ball is one of six patients enrolled in the clinical trial at the medical center. Approximately 6,000 people in the U.S. are diagnosed with ALS every year, two per 100,000 people. 

Keywords: [“Ball”,”trial”,”more”]
Source: http://www.nbc12.com/story/38461686/british-man-flies-to-richmond-every-two-weeks-for-als-treatment

Trial: A Clinical Trial of Pimozide in Patients With Amyotrophic Lateral Sclerosis

Purpose: Purpose: This study will look at whether Pimozide may help to slow the progression of Amyotrophic Lateral Sclerosis. Participants will be on study medication up to 22 weeks, and on study up to 26 weeks. There are 8 clinic visits and 1 phone visit over the course of the Treatment Phase of the study. Some recent studies have focused on using different medications to enhance communication at the neuromuscular junction with the goal of improving muscle function as a result. This study will look at whether Pimozide may help to slow the progression of ALS. 

There are two parts to this study. Treatment Phase: In the first part of this study, 100 people from several Canadian centres with ALS who have provided their consent will be randomly assigned into one of 2 groups. The matching placebo tablets for this study will look exactly like the Pimozide tablets. Placebos are used in clinical trials to find out if the results observed in the study are due the drug being tested, or for other reasons. The total time in the study from the screen visit up until the last phone call communication is about 26 weeks. 

In the second part of this study, the Canadian Neuromuscular Disease Registry will collect data on overall ALS progression using the Revised ALS Functional Rating Scale and breathing using Vital Capacity data collected during breathing tests. Data will be collected at each routine clinic visit for up to 5 years from the end of the first part of the study. The information collected during this part of the study will be used to compare the progression of ALS, after the clinical trial is completed, among the two treatment types. 

Keywords: [“study”,”ALS”,”part”]
Source: https://www.als.net/als-research/clinical-trials/326/

Neuromuscular Disorder Treatment in Augusta, GA

Augusta University’s ALS Clinic is a major initiative to serve ALS patients and their families in the Central Savannah River Area and beyond and one of 34 in the nation to be certified by the ALS Association. If you or someone you love has ALS, you know how difficult it is to be able to access the multidisciplinary care needed to treat and manage this neurodegenerative disease. At Augusta University’s ALS Clinic in Augusta, GA., patients see their ALS physicians and other caregivers on the same day, in the same room, and receive highly specialized neurological care that may slow the disease progression. ALS inhibits all voluntary muscle action, leaving individuals paralyzed while mental faculties and senses remain unaffected. Easy access to comprehensive, coordinated care from ALS physician experts. 

An ALS support group for patients and family members. Nurse Case Managers to coordinate care and address the concerns of patients and their families. A representative of the ALS Association who helps patients and their families access durable medical equipment and other services. Augusta University’s ALS Clinic features a comprehensive, coordinated approach to patient care. While patients and caregivers stay in the comfort of private treatment rooms, specialists address the unique concerns of ALS. 

Once a diagnosis is made, each patient is assigned to one of Augusta University’s ALS physicians. Patients will see the same physician during each clinic visit. Staff members from ALS Association of Georgia are available to discuss the programs and services provided by the organization. 

Keywords: [“ALS”,”patient”,”care”]
Source: https://www.augustahealth.org/neuroscience-center/neuromuscular/als/neuromuscular-disorders-als-clinic
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