ANF News Express

AANEM Foundation News Express

Holly’s Journey: From Guillain-Barré Syndrome to Happily Ever After

    11/16/2018
When doctors told Holly she had Guillain-Barré syndrome (GBS), her initial thought was “Whatever this was – because I had never heard of GBS before – it would be mild and I would get through it. I was naïve. I had no idea what was about to come.” 

The impact of GBS on Holly was severe and being that it occurred shortly after the birth of her first baby, it was a very traumatic experience for her. 

Holly is fortunate she made a complete recovery and is using her experience to help others on their GBS journey. 

Dr. Carlo Rinaldi Receives Co-Funded ANF/MDA Grant for Research on Spinal and Bulbar Muscular Atrophy

    9/19/2018
Carlo Rinaldi, MD, PhD, has been selected as the recipient of a development grant co-funded by the ANF and the Muscular Dystrophy Association (MDA). Dr. Rinaldi, who works as an Associate Professor in the Department of Physiology, Anatomy and Genetics in the Division of Medical Sciences at the University of Oxford in the United Kingdom, will be using this funding to increase understanding of the pathophysiology of spinal and bulbar muscular atrophy (SBMA). 

Dr. Suma Babu Receives ANF Development Grant for Research on Spinal Cord Neuroinflammation in ALS Patients

    9/14/2018
Suma Babu, MBBS, MPH, has been selected as the recipient of an ANF development grant. Dr. Babu, who is an Instructor in Neurology at Harvard Medical School and faculty in the Neuromuscular division of Massachusetts General Hospital, will be using this funding to study the role of inflammation in the spinal cords of people living with amyotrophic lateral sclerosis (ALS). ALS is a neurodegenerative disorder affecting more than 15,000 Americans annually. 

James Higginson's Video Update on his Journey with Guillain-Barré Syndrome (GBS)

    8/14/2018

In February 2018, the AANEM Foundation brought you the story of James Higginson, a man who had been diagnosed with Guillain-Barré syndrome (GBS) in 2017. A year after his diagnosis, James provides good news on his recovery, discusses his future plans, and shares words of wisdom for those with GBS in a video update.



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.