Life changes forever for a family who’s been hit with the diagnosis of a chronic health condition. And for some families in Nebraska, that same diagnosis may mean that adaptations and specialized equipment are required moving forward. This equipment can be expensive, and families don’t always have access to insurance or other financial assistance to help offset the costs. Fortunately, several of Community Health Charities of Nebraska’s (CHC-NE) 22 member charities offer equipment loan programs to make sure that families have access to this valuable support.
This summer, children will be attending summer camps put on by five of Community Health Charities of Nebraska’s charities. These camps give them the traditional summer camp experience while also allowing them to meet and spend time with other kids who share the same medical needs and experiences they do.
The FDA just approved the first drug in 22 years to treat ALS — the second treatment ever for the disease. Edaravone (brand name Radicava) is an antioxidant drug thought to preserve motor neurons in people with ALS, allowing the nerves to keep their muscles working for a longer period of time.
When Ruth and Kody McCain’s first son was about 18 months old, he was diagnosed with Partial Merosin Congenital Muscular Dystrophy, a genetic condition where both parents are carriers but do not generally have symptoms of the disease. With this diagnosis, the couple learned that there was a 1 in 4 chance that their other children would have it.
During the last week of December 2016, the FDA formally approved a new drug from Biogen called Spinraza (nusinersen) for the treatment of spinal muscular atrophy (SMA.) Just five years ago, there were no approved therapies to treat the underlying cause of SMA. MDA has funded foundational work in SMA and invested nearly $750,000 in awards for early-stage development of nusinersen. Since its inception, MDA has invested more than $45 million in SMA research. This breakthrough will help Nebraskans like Ollie and is only possible because of your gifts.