Volunteer with Dejerine-Sottas to help evaluate business accessibility (Chelsea, Michigan)

Ashley Wiseman didn’t intend on making handicap accessibility in Chelsea’s downtown district her mission. It just ended up that way. Earlier this year on the Chelsea native’s 21st birthday, Wiseman wanted to celebrate at Cleary’s Pub because she thinks it Continue reading Volunteer with Dejerine-Sottas to help evaluate business accessibility (Chelsea, Michigan)

Variety appeal to set Chantelle Lawrence free

by Josephine Gillespie for The Queensland Times At only 13, Chantelle Lawrence has already seen the inside of more hospitals than most people will in a lifetime. Born with a rare progressive neuromuscular condition known as Dejerine-Sottas Syndrome, Chantelle has Continue reading Variety appeal to set Chantelle Lawrence free

Girl with Dejerine-Sottas receives Children of Courage award

From the Macedon Ranges Leader, by Barry Kennedy: CARLSRUHE’S Amber Jepsen has a growing set of hobbies including horse riding, playing the keyboard, card games, drawing, painting and writing. The seven-year-old is confident she will be a famous author and Continue reading Girl with Dejerine-Sottas receives Children of Courage award

Schoolboy with Dejerine-Sottas wins international horse riding competition

By Suruchi Sharma A young horse rider at an Elstree riding school is celebrating his win as junior champion at an international tournament in Belgium. Michael Murphy, 13, from Mill Hill, went to Moorsele, in Belgium, two weeks ago with Continue reading Schoolboy with Dejerine-Sottas wins international horse riding competition

Rebecca Ionasescu, 86 Victor Ionasescu, 83

Drs. Rebecca and Victor Ionasescu, researchers into muscular dystrophy and Charcot-Marie-Tooth, have passed away after a long life with each other. Dr. Rebecca (Gabi) Ionasescu, who specialized in internal medicine and conducted research in immunology back in Romania, joined Victor Continue reading Rebecca Ionasescu, 86 Victor Ionasescu, 83

Boy with Dejerine-Sottas in the news

My trusty sidekick Google alerted me to the following story of a boy with Dejerine-Sottas in England whose horseback riding program may be cut due to lack of funds and volunteers. Michael Murphy, 13, has Dejerine-Sottas disorder, which affects the Continue reading Boy with Dejerine-Sottas in the news

9-year old hurdles her disability to be in PossAbilities Triathlon

LOMA LINDA – Abbey Umali does not care if she comes in last place. The 9-year-old girl is just happy to compete in the sixth annual PossAbilities Triathlon today at Loma Linda University. Abbey – who has a rare form Continue reading 9-year old hurdles her disability to be in PossAbilities Triathlon

California Girl Named 2008 MDA National Goodwill Ambassador

The Muscular Dystrophy Association’s 2008 National Goodwill Ambassador is Abbey Umali of Redlands, Calif., a lively and articulate 8-year-old with a form of Charcot-Marie-Tooth disease. Abbey is the first MDA national goodwill ambassador to hail from California in the program’s Continue reading California Girl Named 2008 MDA National Goodwill Ambassador

Quick mention of Dejerine-Sottas in article about Virginia Tech gathering

This article about the gathering of Virginia Tech students following the shooting mentions a graduate student with Dejerine-Sottas: Jessica Swanson, another graduate student at the convocation, said she knew one of the victims, Ryan Clark, whom she called “Stack.” Swanson, Continue reading Quick mention of Dejerine-Sottas in article about Virginia Tech gathering