There are two major categories of ALS cases. Familial ALS (FALS) – which refers to cases where there is a known family history of the disease – accounts for 5-10% of all cases in the U.S.
Since 2021, June 2 has been celebrated as Lou Gehrig Day by MLB in ballparks across the country, a day to help spread awareness and raise funds for people living with ALS and their families. June 2 marks when Gehrig became the New York Yankees starting first baseman in 1925—the start of his incredible streak of consecutive games played—as well as the day he passed away from ALS in 1941.
Over the past years we’ve had many conversations and interviews with ALS caregivers, and while no two experiences are ever alike, there are often similarities and storylines throughout. In recognition of National Family Caregivers Month, we thought we would share some of these caregiver stories and advice we’ve collected along the way.
“It seemed natural to take advantage of The ALS Association’s gift annuity program. My donation not only provides me with generous payments but a helpful tax deduction as well.”
Thank you to the members of the Time to Diagnosis Working Group for volunteering their time and expertise to develop the thinkALS™ early diagnosis tool and the consensus statement on the benefits of early diagnosis.
When Tony got diagnosed with ALS, he and his wife Karen turned to each other to figure out their path forward, and they found they were better when they could face it together. The role of ALS caregiver wasn’t what Karen had planned, but together with Tony and their family, they set about figuring out this “new normal.”
The multidisciplinary care model brings together a team of health care professionals specially trained to address the needs of people living with ALS, allowing them to receive care from each discipline they need during a single visit. The ALS Association collaborates with experienced ALS clinicians across the country to help ensure people living with ALS have access to this type of specialized care.
Bill's sister, Nancy Reckinger, passed away. In her will, Nancy asked something rather unusual of Bill. She wanted him to select charitable organizations worthy of receiving her estate.