Rare Disease Day® is an opportunity to recognize strength in coming together. It is estimated there are more than 7,000 rare diseases affecting 25-30 million Americans. That means one in ten Americans suffer from a rare disease, including people living with ALS.

ALS Focus recently launched its third survey, gathering data from ALS caregivers to identify the unique needs and challenges of ALS caregiving. Responses to this survey will help translate the caregiver experience into action and influence ALS programs and policy decisions. ALS Focus Director Dr. Sarah Parvanta detailed the questions her team is asking in the current survey during a recent episode of Connecting ALS. A portion of that conversation has been edited and condensed below.

Connecting ALS recently sat down with Dr. Ericka Greene, Director of the Neuromuscular Clinic Houston Methodist Stanley H. Appel Department of Neurology to learn more about her personal experience working in ALS research and growing up in the STEM field to understand this trend from her perspective.

ALS can take away many things, but one thing it cannot take away is love. In celebration of Valentine’s Day, we wanted to highlight one of many stories of love, commitment and ALS. Meet Jonathan and Janetta Michelsen.

As Feeding Tube Awareness Week comes to a close, we spoke with Brenda and Kelly Kraft and asked them to share their family’s story about their personal experience with making this difficult decision, and the relief they felt once they had made it.

This week the world turned their focus to the celebration of women and girls in science, shining a light on the tremendous gender gap that still exists in the world of science. We asked Jill Yersak, Ph.D., Vice President of Mission Strategy at The ALS Association about her personal experience growing up in the STEM field.

This week, The ALS Association commemorates Feeding Tube Awareness Week, an opportunity to recognize the important role that feeding tubes can play in the lives of people with ALS.

The ALS Association recently hosted an COVID-19 update webinar for the ALS community, with panelists Dr. Lou Libby, Dr. Richard Bedlack, Dr. Cherise Rohr-Allegrini, Dr. Urvi Desai and Dr. Marinella Galea, moderated by ALS Association Board of Trustees member Dr. Ken Menkhaus, addressing issues specific to the concerns and interests of the ALS community.

Through word of mouth, Stuart and his wife Marcia found five or six families in their community who were also dealing with the impact of an ALS diagnosis. They started an informal support group. The group started working with the chapter relations team at The ALS Association and formed The ALS Association Alabama Chapter.

On December 22, the ALS Disability Insurance Access Act became law. Since the law was passed, The ALS Association has met with the Social Security Administration to ensure applications for SSDI are quickly processed and benefits start immediately for people with ALS.

With your help securing this investment from Congress, we can drastically accelerate the fight against ALS, providing greater hope to every American family affected by ALS.

Research supported by The ALS Association, through a $1.4 million grant, has grown into a $15 million program to identify biomarkers – things in the body like heart rate or fluid levels that can be measured in order to diagnose and track progression of a disease. Currently there are no biomarkers for ALS, making it a critical, unmet need in the field.

Marjio opened her own personal training studio, MOTIVATION STATION, last September. While providing a safe environment for Marjio and her clients, the studio has also provided increased flexibility for her role as caregiver to Terry.

After watching his Aunt Christie battle ALS for more than nine years, twenty-one-year-old Ryan Wilson was determined to find a way to honor her fight and make a difference for the ALS community. So, he decided to ride his bike from Poughkeepsie, NY to Miami, FL to help raise awareness and funds for ALS research.

Six months after their wedding, Jonathan began noticing unusual weakness in his right hand which persisted, and then seemed to inexplicably spread into his right leg. Because of his medical education, he suspected ALS.

Despite the many challenges caused by COVID-19 this past year, ALS research made strides toward finding effective treatments for ALS. As 2020 winds down, we wanted to share an update from our partners at Biogen on some of their ongoing research projects.

The ALS Disability Insurance Access Act went into law Tuesday, removing the 5-month delay for people with ALS to access the Social Security Disability benefits. This marks the culmination of a multi-year fight by ALS advocates across the country.  

Back in 2000, when Veronique Belzil was working as a counselor in Canada, she found a new path after watching her husband’s uncle quickly succumb to ALS.

The Food and Drug Administration on Friday approved emergency authorization of a COVID-19 vaccine developed by Moderna, the second vaccine approved by the agency to combat the coronavirus pandemic.

We recently spoke with George Stevens – husband, father, grandfather, and a person living with ALS. George and his family live in Maine and have been very involved with The ALS Association Northern New England Chapter. Here is what George had to say about his journey with ALS in his own words.