March 23, 2020 – We have received many questions about COVID-19 and its impact on people with ALS, their families, and their caregivers. We convened a panel of volunteers and staff to answer these questions – their bios are at the bottom. This situation is rapidly changing. We will update this FAQ as we receive more questions and more current information.
The ALS Association Northern Ohio Chapter works both federally and locally to advocate on all fronts for the ALS community. Board members, staff, and advocacy volunteers have made progressive strides in urging legislators to make decisions that will positively impact the lives of people living with ALS and their families.
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.
“My father’s life paralleled Lou Gehrig’s in a lot of ways. They both had humble beginnings and were hard-working, selfless men who thought of others first,” says Jeff Rowe. In 1988, Jeff’s father Frank lost his battle with ALS at 62 years young, just nine months after his diagnosis.
Stay-at-home orders in response to the COVID-19 pandemic have upended many aspects of life, not least of which is volunteerism. And while the number of people volunteering has been declining in recent years, those who do volunteer are finding unique ways to stay engaged despite the coronavirus.
We’re dedicated to providing resources for military veterans living with ALS, and funding research to understand the link between military service and ALS. Learn more.
ALS has always had a connection with baseball. In 1939 when Lou Gehrig stood on the mound, the world became aware of the disease. In 2014, Boston college player Pete Frates inspired the world to take part in the fight against ALS. In 2017, Major League Baseball is supporting The ALS Association’s launch of the Home Health Initiative
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.
By making The ALS Association a beneficiary of your will or trust you can create a truly philanthropic legacy, exemplifying your values and lifetime commitment to a world without ALS. Gifts in wills and trusts (“bequests”) are easy to set up, often let you maintain control of your assets today, and can often be easily modified at any time as you go through life.
The type of care that people with ALS receive affects survival and quality of life. That is why the ALS Association is committing nearly $2 million over the next two years to support research focused on optimizing the effectiveness, efficiency, and accessibility of ALS care. These funds, granted through the new Quality of Care Research Awards, will be distributed across five projects that focus on the health and care for people living with the disease.