Choosing insurance is a big decision and should be considered carefully based on your unique medical needs. The ALS Association partners with the Patient Advocate Foundation (PAF) to provide The ALS Insurance and Benefits Resource Line, a source designed to provide individualized case management assistance for people living with ALS, their family members and caregivers.
Thanks to our Seed Grant Program, 16 ALS researchers now have up to $50,000 each to gather the preliminary data they need to propel their research in promising new directions, which can ultimately lead to new treatment options, approaches that optimize current care, or ways to help prevent ALS altogether.
For 30 years, Dr. Joel Shamaskin was a primary care physician in Rochester, New York. When he received a life-changing ALS diagnosis in 2016, he channeled his energy into what mattered most -- his family and his community. He offers his Brief But Spectacular take on living with ALS.
The surge in awareness we saw from the Ice Bucket Challenge helped us to make great strides in ALS advocacy. From new policies to help with care and support for families impacted by the disease, to tremendous increases in governmental funding for ALS research, we’ve seen great progress. But we still have work to do and need your help.
Two years ago, Holly Gross was diagnosed with ALS, a disease she calls ‘a monster with no mercy.’ As her husband struggles with Parkinson’s, it’s her sons who mostly take care of her. She can’t use her voice, but she talks to them. She can’t move, but she keeps them on track. All they want now is more time with her.
Currently, ALS is considered a “diagnosis of exclusion,” meaning people experiencing ALS-like symptoms often have to undergo a battery of different tests designed to rule out other conditions. This means it takes, on average, 10-15 months from the time a person first notices symptoms to receiving an ALS diagnosis.
Reducing this time to diagnosis is critical to avoid unnecessary testing and medical procedures and for people living with ALS to get access to multidisciplinary care and treatments that can help maintain their quality of life.
You can sum up the kind of pediatrician Jim Plews-Ogan was with two words: house calls. During his more than 20 years of practice for adolescents and children in Charlottesville, Virginia, Jim still made house calls when needed as part of the personalized care he offered. Not surprisingly, folks like that end up having deep ties to the community they serve. Even a quick trip to the grocery store for Jim and his wife Peggy often means multiple stops to chat with parents of patients and former patients.