In February of 2009, Jonay Hipkins lost her 14 month old daughter Jordyn to type 1 spinal muscular atrophy (SMA), the most severe form of the neurodegenerative disease that kills more babies than any other genetic disease.

Last month, Jonay’s co-workers helped her honor Jordyn and all the other victims of the disease with a simple fundraiser. The entire staff of Mclaren Family Care in Grand Blanc, Michigan purchased FightSMA t-shirts and then made a donation of at least $5.00 to wear the shirt and jeans to work. In addition to raising $250 for SMA research, the staff also raised awareness of the disease. Thank you to the staff of Mclaren Family Care for joining the fight to end SMA!

Plans are already in the work to repeat the event later in the summer.

At only 12 years old, Erinne Williams is already an inspiration to a lot of people. She was diagnosed with spinal muscular atrophy (SMA) at 14 months of age and doctors predicted she wouldn’t live beyond her 8th birthday. Because of SMA, Erinne has endured more than most of her peers, including multiple hospitalizations and surgeries. While the wheelchair she depends on is plainly visible, the metal rods in her back that help to counteract scoliosis are not. In addition, Erinne depends on a ventilator to help her breathe and a feeding tube to help her eat. But, despite having a disease that progressively weakens her muscles and she knows will some day take her life, today, Erinne is a seventh grader who enjoys playing wheelchair sports like hockey, soccer, and baseball.

Erinne has made such an impact on her community, that it has even rallied around her and her family - literally. A pep rally was help at Erinne’s school as part of an attempt to convince the producers of the tv show “Extreme Makeover: Home Edition” to help Williams family obtain a wheelchair accessible house. The application to the show is pending.

To read more about Erinne, click here or here.

To see footage about Erinne, click here.

On June 20th, Joshua’s Buddies, FightSMA’s chapter in Troy, Michigan, held its 10th Annual 5K Run/Walk/Roll to raise funds for Spinal Muscular Atrophy (SMA) research. Despite concerns about rain, crowds turned out to show their support of the fight against SMA - the #1 genetic killer of children under the age of two.

Thank you to the Cueter family (pictured below) and all their supporters for 10 great years!