The Pooled Resource Open-Access ALS Clinical Trials (PRO-ACT) database recently received the Healey Center International Prize for Innovation in ALS, a $50,000 prize. The database is the largest collection of ALS clinical trial data and includes de-identified records of 11,000 patients from 23 clinical trials.
Steve realized he needed to turn to his faith to help him live with ALS. Steve assembled a team and got to work developing ALS Family of Faith, a new ministry designed to meet the needs of those looking for prayer and spiritual counseling during their journey with ALS.
A gene targeted therapy for ALS could potentially fix the genetic mutations that are causing the disease. But most gene targeted therapies for ALS in development today do not target DNA directly.
When most people think of disease research, they think of clinical trials, which test the safety and effectiveness of new medications. Not everyone can participate in clinical trials, but there are other ways you can help.
Besides clinical trials, you can join a patient registry, fill out surveys, and participate in observational trials – studies where doctors observe someone’s disease over time to learn about how it progresses.
If you have ALS, you may want to get a genetic test. It will help you learn which, if any, ALS-associated genetic variants you have. Genetic testing comes with many benefits, but also some risks, and may not be right for you. Below, we highlight some of the main medical, psychological, social, and legal benefits and risks of getting a genetic test. We encourage you to speak to a genetic counselor to learn more.
If you have a strong family history of ALS (two or more individuals with ALS in your family), this might increase your chance of getting ALS or passing it on to your children. If you have or had a family member with ALS, you may want to get a genetic test to learn if you have any genetic variants that increase your chance of getting the disease. Genetic testing comes with many benefits, but also some risks, and you may feel it is not right for you. Below, we highlight some of the main medical, psychological, social, and legal benefits and risks of getting a genetic test. We encourage you to speak to a genetic counselor to learn more.
Research funded by The ALS Association has found that NFL players are four times more likely to be diagnosed with ALS and die from the disease than people who never played in the league, adding to the mounting evidence of a link between playing football and ALS.
People with ALS and their caregivers who participated in a recent ALS Focus survey said that telehealth appointments improved their quality of life by saving them time and money, and that the appointments are just as good as in-person health care visits.
Connecting ALS recently sat down with Ann Larson to learn more about her experience as an ALS caregiver for her beloved husband Dave, and better understand the challenges she encountered during their three-year journey with the disease.