Taylor’s Many Blessings in Life: Faith, Family, Friends, Hockey, and Myasthenia Gravis

    5/31/2018
Take a moment to read Taylor’s story about a college student and Division I athlete recently diagnosed with myasthenia gravis (MG). While her MG battle began from rock bottom, Taylor says it has been a blessing in her life: “It has made me a better person, given me a new perspective on life, and opened so many doors for me to help and meet new people.”

Meet Kristin: Mother, Social Worker, and Charcot-Marie-Tooth Survivor

    3/23/2018
At age 23, Kristin's medical problems stopped her in her tracks and totally disabled her.
 
“My bones had deteriorated so much that I could barely walk … My muscles had atrophied so fast. The doctors were stumped and I was so very depressed. My life as I had known it was over.” 
 
Kristin explains that it took her a “few years and a few tears” to get an actual diagnosis.

“I saw a few different neurologists who ran testing, but it wasn’t until I had my son at age 31, that my neurologist finally figured out the diagnosis. I had Charcot-Marie-Tooth Type 4C."

AANEM Foundation Announces Clinical Research Fellowship on Chronic Inflammatory Demyelinating Polyneuropathy

    3/23/2018
The AANEM Foundation for Research & Education is pleased to announce a new clinical research fellowship opportunity focused on chronic inflammatory demyelinating polyneuropathy or CIDP. The application deadline for this fellowship award is October 15, 2018. 

Meet James Higginson: Award-Winning Artist and Guillain-Barré Syndrome Survivor

    2/8/2018
Photographer/director/artist, James Higginson, has accomplished much in his 60 years. Among his numerous accolades, he has received an Emmy Award for his set decoration work on the 1980’s show “Pee-Wee’s Playhouse,” international film festival awards for his 2012 feature length experimental art film, “Willful Blindness,” and has completed a new documentary, “Devout.” James was hoping to release his documentary in 2017, but 6 months ago, while working on house renovations, his hands and feet went numb. His diagnosis: Guillain-Barré Syndrome. 

Update on Dr. Lisa Williams’ Clinical Research in the Neurological Application of Neurotoxins

    1/8/2018
In 2016, the foundation was pleased to select Lisa M. Williams, MD, as the recipient of the Clinical Research Fellowship Award in Neurological Application of Neurotoxins. Dr. Williams used this funding to continue her focus on dysphagia in neuromuscular diseases while completing a second fellowship at the University of California, Davis Medical Center (UCDMC). Her research efforts as part of this fellowship award began on August 1, 2016, and continued through July 31, 2017.   

Win an Award for Your Scientific Research!

    12/13/2017
Find out more about abstract awards you could win from the AANEM Foundation. Abstracts for 2018 will be accepted between January 1 and March 15, 2018.  

James Ramirez’s First Grade Life: Hot Wheels, Rock Music, and Duchenne Muscular Dystrophy

    12/1/2017
Six-year-old James Ramirez enjoys watching “The Magic School Bus” and dinosaur movies, playing with his Hot Wheels cars, and listening to rock music. His mother, Samantha, describes him as a “little goofball who is full of energy.”

While he may be energetic, as much as he tries, James just cannot keep up with other kids his age because his muscles don’t work as well as theirs.

The official diagnosis of Duchenne muscular dystrophy (DMD) came on September 6, 2016 – on James’ first day of kindergarten.