When you register with the National ALS Registry this national database helps collect information vital to assisting scientists to learn more about ALS. Collection of information is critical to ensure ALS research continues in the hopes of finding out the cause, and ultimately the cure, to this horrific disease.
ALS of Nevada Encourages You to Join the National ALS Registry: Learn more about the National ALS Registry. We hope you will decide to join.
It is important to get as many ALS patients as possible to participate. Although you may not directly benefit from taking part in the National ALS Registry, your information could help ALS patients in the future.
Nevada residents are encouraged to also contact ALS of Nevada directly in addition to joining the National ALS Registry. Send an email to us or call 702-777-0500 for further information or you can send in the attached pdf to us (firstname.lastname@example.org) – it is confidential.
NOTE: The following information is reprinted from the Nevada Neuroscience Foundation, Volume 4, Issue 4 October 2007:
Being a caregiver for a person with ALS can be a full time job. Yet many caregivers today already have full time jobs and are juggling multiple sets of responsibilities. Caregiving can be challenging.
This is especially true in today’s success driven society. Taking time off from work to care for a loved one or being preoccupied with personal issues while at work can take a toll on the caregiver’s career and financial situation, potentially resulting in lost wages and/or lost job opportunities.
The effects of managing two jobs are not limited to the workplace, however. Fatigue, exhaustion, depression, and other health problems are common in daily life, putting more strain on an already stressed-out caregiver.
The Family Medical Leave Act
In 1993, an important piece of legislation was signed to help caregivers balance their dual responsibilities. The Family Medical Leave Act (FMLA) provides eligible employees up to 12 weeks of unpaid leave each year with job and health benefits protected. Under FMLA, a caregiver for someone with MS (or ALS) can take off 1 day a week without worrying that his or her job is in jeopardy.
The FMLA carries certain restrictions, and the act might not be applicable in all cases. For example, the employee must have worked for the employer more than 12 months, and the person being cared for must be an immediate family member, specifically a spouse, child, or parent. Nevertheless, FMLA gives caregivers important rights in the workplace and enables caregivers to strike a balance between the demands at the office and the demands at home.
Taking time off from work to care for a loved one with ALS under FMLA can play an important role in helping to balance responsibilities. But not everyone is eligible for FMLA, and not all caregiver responsibilities can be met by taking time off. For these situations, other more creative solutions might prove mutually beneficial for employees and employers.
“Flextime” schedules enable people to work non-traditional hours while still working a full 40-hour week. In some companies, this may mean going to the office every day but working from 7 to 3 instead of 9 to 5. In other companies, this may mean going to the office 4 days per week and working 10 hour days.
For some caregivers, working part-time may be necessary, and some companies may be open to “job sharing” as an option, allowing two people to work part-time on different schedules to fill the responsibilities of one job. Some combination of part-time work in the office and per-hour contract work at home might be another option.
Ultimately, creating a flexible work schedule that is beneficial to both employer and employee can help ease some of the stress that caregivers face in balancing their responsibilities, as well as help employers retain dedicated, more satisfied employees.
Reprinted from “Making Strides, Perspectives on Living With MS,” Caregivers Rights
Veterans with ALS can find information about service-connected benefits on the Veterans Administration website: www.va.gov.
Thanks to the efforts of Department of Veterans Affairs, ALS has been listed as a disease entitled to presumptive service connection since 2008. This means that if a service member is diagnosed with ALS his or her condition will be presumed to have occurred during or been aggravated by military service and as such be entitled to service connection and full benefits. (See www.va.gov for more details.)
Brain and Nervous System
The discovery that many adult organs, including the brain, harbor stem cells with the capacity to regenerate vital tissues has fueled a new science of regenerative medicine. Research at UCSF and elsewhere has identified neural stem cells in the embryonic and adult brain.
These insights help to guide efforts to generate replacement nerve cells from stem cells. The promise of these studies is that cells created and tailored in the laboratory will be able to promote the repair or regeneration of brain areas injured in devastating neurological diseases such as Parkinson’s disease, spinal cord injury, Alzheimer’s disease, stroke, and ALS (amyotrophic lateral sclerosis or Lou Gehrig’s disease).
ALS Research Information
- The Packard Center for ALS Research at Johns Hopkins
- ALS Therapy Development Institute Research Center
- Forbes Norris MDA/ALS Research & Treatment Center at CPMC
Cell Replacement Strategies
The potential for cell replacement strategies to treat these neurological diseases is being explored in multiple laboratories at UCSF, including both the Parnassus and Mission Bay campuses, as well as UCSF-affiliated hospitals and other clinical sites.
Arnold Kriegstein, MD, PhD John G. Bowes Distinguished Professor in Stem Cell and Tissue Biology, is the director of the Eli and Edythe Broad Center of Regeneration Medicine and Stem Cell Research at UCSF.
For more information, please click here: http://www.ucsf.edu/about/stem-cells.