November is National Family Caregivers Month, a time to recognize and honor the tremendous contributions of family caregivers. Throughout the month we have been sharing stories of caregivers in the ALS community. Caregiving is a full-time job, and many caregivers also maintain full time jobs while dealing with the financial and emotional stress that comes with being a caregiver.
Bill Dodge, who served as a caregiver to his wife, Laura until her ALS journey ended earlier this year, remains a passionate advocate for ALS funding and public policies. We sat down to talk to him about why he continues to fight earlier this year.
Continue reading How Gardening is Part of Caregiving: Bill Dodge’s Story
Jen LeVasseur’s caregiver journey began while she was still a newlywed. Her husband, Noel, was diagnosed with ALS just 17 months after their wedding.
Noel has two daughters from a previous marriage, Jen two sons. (They embrace the Brady Bunch, blended family analogy.)
Continue reading Caregiver Opens Up About ALS and the Holidays
Lynn Hogan became a caregiver early in her relationship her fiancé, Steve Ziegler.
“On our first date we went out and he was sitting next to me and he said, ‘You might notice — don’t get weirded out or anything — but you might notice some twitching, weird stuff going on with my arms. We don’t know what it is yet. But one of the things it could be is ALS,’” she recalled.
Continue reading Bride-to-be Caregiver Reframes Future with a Fiancé Living with ALS
The ALS Association submitted a report to the FDA documenting the real impact ALS has on people living with the disease and their caregivers in order to inform the development of treatments. The information in the report draws from a survey of people living with ALS.
The ALS Voice of the Patient Report is a groundbreaking document that gives the FDA and other key stakeholders, including drug developers, health care providers, and insurance companies, data from people with ALS and caregivers about the everyday impact and burden the disease has on peoples’ daily lives, their experiences with currently available treatments, and their hopes for future ALS therapies. This information is also intended to help provide context of the disease burden to the FDA to inform the Agency’s review of new drug applications. This report speaks loudly and clearly to the immense unmet medical need we all are working to confront.
Continue reading Groundbreaking ALS Voice of the Patient Report Submitted to FDA
The Greater New York Chapter of The ALS Association has commemorated a pivotal caregiver from ALS history with a luncheon named in honor of Eleanor Gehrig, the wife of famed baseball hero Lou Gehrig.
Continue reading The Iron Woman Behind the Iron Horse
Anthony Vick spent 16 years serving his country in the Army and Air Force Reserves, including 10 years in the civil service. Vick says he was lucky to be able to serve his country, service that came to an end in 2017 when he was diagnosed with ALS.
“It was very slow to come about. It took about two years, probably 50 doctor visits, two surgeries and was set up to have a third surgery on my spine, and the week before I went in, my doctor referred me to another neurologist,” Vick says.
It was during that visit to the neurologist that Vick first learned that his symptoms might be related to ALS.
Continue reading Anthony Vick: “Faith Over Fear”
Maya Bulmer was thrust into the role of caregiver at a young age. Like many seniors in high school, Maya spent the 2018-2019 school year filling out college applications, readying for the next chapter in her life.
“I had it all planned out, I had full tuition, I had something that I wanted to do in a career that I was interested in,” Maya said when we sat down to talk earlier this year. Maya’s mother, Elizabeth McCormick, is the director of clinical education programs at the University of Tulsa
Continue reading Maya Bulmer: “Today is what we have”