News Express | American Neuromuscular Foundation

Christopher Anselmo’s Journey from Ability to Disability with Muscular Dystrophy

11/6/2019
As a high school senior in 2003, Christopher Anselmo found himself hospitalized after a car accident. While in the hospital, doctors performed a routine blood test and discovered Christopher had extremely high creatine kinase enzyme levels. In 2004, after numerous doctor’s appointments and a thigh biopsy, Christopher was diagnosed with dysferlinopathy (also known as Miyoshi myopathy and limb girdle muscular dystrophy type 2B), caused by a lack of a protein called dysferlin – a protein that aids in the repair of muscle cell membranes.

Sean Dorney: Grappling with ALS in His Golden Years

4/5/2019
Many working adults fantasize about their retirement years, when their children are grown, they can stop earning an income, and the biggest worry becomes how to spend their newfound free time. One doesn’t expect to spend their “Golden Years” with a debilitating neuromuscular disease, but that’s exactly what happened to Sean Dorney, an award-winning journalist from Australia.

Orlando Houston: “I May Have ALS, but ALS Doesn’t Have Me!”

2/8/2019
Orlando Houston, recently diagnosed with ALS in October 2018, believes that researchers will find a cure for ALS someday, but to find it, continued scientific research is needed.

“The cure is out there,” Orlando said. “We have people willing to do the research, we just need people willing to help support this research. As long as we continue to seek, we will soon find the missing key!”

2019 AANEM Annual Meeting: Funds Available for Physicians from Economically Developing Countries to Attend

1/8/2019
The ANF offers International Fellowship Scholarship opportunities for up to 5 physicians from economically developing countries to attend the 2019 AANEM Annual Meeting to be held October 16-19, 2019, in Austin, Texas. Additionally, those who submit an application but do not receive a Foundation International Fellowship Scholarship are automatically considered for travel scholarships offered through the North American Chapter of the International Federation of Clinical Neurophysiology (IFCN). The IFCN distributes up to 15 scholarships.

Hattie’s World with SMA: Donuts, Dinosaurs, and Doctor Visits

12/14/2018
Hattie McBride, 2, plays with princesses, dinosaurs, and Mickey and Minnie. She dons a cape to become a superhero, colors pictures with her crayons, and gets her fingers dirty with Play-Doh.

Playtime is standard in Hattie’s life, but so are her visits to the doctor … which have become more frequent since being diagnosed with spinal muscular atrophy (SMA) strong type 2 earlier this year.

Donate to the ANF to help patients like Hattie!

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.

No Slowing Down for Debbie Pentland, Even After Lambert-Eaton Myasthenic Syndrome Diagnosis and Two Other Autoimmune Diseases

7/27/2018
At 20, she was diagnosed with her first autoimmune disease – Raynaud’s syndrome. Twelve years later, a second autoimmune disease diagnosis, Systemic Lupus Erythematosis. Then, in 2011, at 52, after collapsing during a marathon, Debbie Pentland learned she had Lambert-Eaton myasthenic syndrome (LEMS), her third autoimmune disease. Read her inspiring story and find out how you can help patients with neuromuscular diseases, like Debbie, by making a donation to the AANEM Foundation.