As ALS progresses, ALS survivors may lose the ability to talk. Message Banking is a preventative step to record your voice so that in the event of losing it, you may make use of the recorded voice for your communication. ModelTalker is still in its infant stages and there are bugs to work out. However, they are very quick to respond to any questions or concerns, and provide a way to record via their website or a program you can download. You do need to buy a special headset for this—and be willing to pay $100 for the use of the voice bank onces it is ready.
Predictable App: need to pay $150.00 for Predictable appfor Model Talker to work.
DANGER: this drug has been shown to elevate some ALS survivor's liver enyzmes. This is usually perceptible after the first 30 days. Some studies suggest that if a person has such adverse reactions, they can stop the treatment and resume later and not suffer from the problems.
However, most ALS physicians consider Riluzole an overhyped and non-productive medicine for ALS survivors.
Lou Gehrig was one of the many unfortunate U.S. Citizens to fall victim to the ALS disease. His fraternity pledged to help other people who suffer from this disease across the United States. As noted on this website, the volunteers do not do "errands" for the family or take care of the ALS survivor.
This foundation is more than just helping out around the house and yard—and it is free (fully volunteer).
Neural Regeneration Research has published a review detailing the latest findings in the use ofcannabisderived compounds to treat amyotrophic lateral sclerosis (ALS).
Networks & Websites
The ALS Association is an American nonprofit organization that raises money for research and patient services, promotes awareness about and advocates in state and federal government on issues related to amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease.
The ALS Association is broken up into distinct chapters, each servicing a particular geographic area of the United States all working under the umbrella of a national charter and administrator.
Rare Diseases Clinic Research Network (RDCRN)
We are the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research (ORDR) National Center for Advancing Translational Sciences (NCATS). We are funded by ORDR, NCATS, and collaborating institutes and centers.
Our mission is to advance medical research on rare diseases by providing support for clinical studies and facilitating collaboration, study enrollment, and data sharing. Through the RDCRN rare diseases research groups consortia, researchers and their teams work together with patient organizations (patient advocacy groups) to study more than 190 rare diseases at clinical centers across the nation and worldwide.
The submission of adverse event information was optional when the results database was first released but was required beginning in September 2009. Results information for registered and completed studies is submitted by the study sponsor or principal investigator in a standard, tabular format without discussions or conclusions.
The information is considered summary information and does not include individual patient data.