The ALS Association - DC/MD/VA Chapter

Note: The organization did not respond to this question.

Note: The organization did not respond to this question.

Due to the unprecedented financial and public health crisis over the last 18 months, the Chapter has not had the excess resources to invest in leadership development.

The ALS Association holds workshops each year that bring together scientists researching ALS and other neurodegenerative diseases, the pharmaceutical industry and biotech companies to generate new research suggestions and fresh insight. In addition, The Association staff serve and hold leadership positions on a various national and international organizations dedicated to unlocking the mysteries of ALS. Additionally, The Association’s network plays a lead role in advocating for increased public and private support of ALS research and public policy initiatives that responds to the needs of people with ALS. Our organization’s public policy efforts in Washington, D.C. have raised the profile of ALS at the White House, among members of Congress, and within federal agencies, including the NIH, FDA, DOD, VA, SSA, and CDC.

The past year has been extremely challenging for our organization. More importantly, however, is how extraordinarily challenging the year has been for all the people living with ALS and their caregivers in our service area. During the past year, our Care Service Coordinators made an extra effort to stay in touch with patients and their families to ensure that while they could not make home visits in person and our Loan Closet was temporarily closed, people living with ALS still received the high level of care coordination and emotional support they needed. The transition of our services, such as home visits and support groups, to all-virtual was a huge undertaking and means that being connected digitally is more important than ever for people with ALS. And, since ALS medical clinics continue to operate primarily via telemedicine, it is critical that every ALS patient has a device through which they can access medical care and support. Our care team was able to coordinate support for people with ALS to keep them in contact with their medical teams, participating in virtual home visits and support groups, and reducing their isolation by getting the support and services they need from our Chapter.