AANEM Patient News Express

AANEM News Express

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."

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. 

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.

Moving from Family Secrecy to Public Advocacy: Bernadette Scarduzio and Her Life with Charcot-Marie-Tooth

    11/8/2017
A disease that was once a family secret has now become Bernadette Scarduzio’s greatest passion – Charcot-Marie-Tooth (CMT).

Meet Beck Cammarata, 7-Year-Old Living with Duchenne Muscular Dystrophy

    10/9/2017

Help patients like Beck by making a donation today!

In many ways, Beck Cammarata is like most 7-year-olds. He plays Cops and Robbers at recess with his friends, loves cars, and as many kids do, fights with his older sisters. But Beck has also endured much more than most kids his age as a child living with Duchenne muscular dystrophy (DMD).

AANEM Foundation Partners with MDA to Fund Research

    6/2/2015
Research is the key to finding the cause of neuromuscular disease and identifying effective treatments. Through AANEM's new partnership with the Muscular Dystrophy Association (MDA), the AANEM Foundation has the ability to identify research projects that fit within the AANEM Foundation's mission.  

National Neuropathy Awareness Week

    5/7/2014
May 12-16 is National Neuropathy Awareness Week. More than 20,000,000—or 1 in 15—Americans suffer from neuropathy, and many of them do not know they have it.

National Neuropathy Awareness Week May 13-17

    5/7/2013
Neuropathy Awareness Week draws attention to the significant toll this often painful and potentially debilitating disease is taking on Americans’ health and quality of life.


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