News Express
-
Jerry R. Mendell, MD, Receives 2023 Best Abstract Award
August 18, 2023
Jerry R. Mendell, MD, has been awarded the 2023 Best Abstract Award for his abstract, “Long-Term Safety and Efficacy in Patients With Duchenne Muscular Dystrophy 4 Years Post-Treatment With Delandistrogene Moxeparvovec in a Phase 1/2a Study.”
-
Finding Hope and Laughter in the Face of ALS: Brooke Eby’s Journey
July 13, 2023
In March 2022, at the age of 33, Brooke Eby received a life-altering diagnosis: amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. Now 34 years old, Brooke reflects on her journey and how she has transformed her diagnosis into a powerful platform for awareness and advocacy.
-
Support the RACE to CURE Neuromuscular Diseases
July 07, 2023
-
Late-Onset Neuromuscular Disease Consortium Founded to Improve Care for Adults Across Neuromuscular Conditions
November 29, 2022
Recognizing an opportunity to better serve people living with rare neuromuscular conditions diagnosed in adulthood, the American Neuromuscular Foundation (ANF) founded the Late-Onset Neuromuscular Disease Consortium (LONDC) to facilitate collaboration across advocacy organizations, academia, clinical practice, industry, and other stakeholders. Visit londc.neuromuscularfoundation.org to learn more and stay up to date on LONDC news.
-
World Limb Girdle Muscular Dystrophy (LGMD) Awareness Day
September 30, 2022
-
Dr. Colin Franz Receives Development Grant for Research on Activity-Based Treatments to Accelerate Peripheral Axon Regeneration
May 13, 2022
Colin Franz, MD, PhD, was selected to receive a development grant from the ANF in 2021 for his research project “Activity-Based Treatments to Accelerate Peripheral Axon Regeneration.” Franz’s research will set the stage for a follow-up clinical trial to bring the most promising therapy to patients.
-
Dr. Elie Naddaf Receives Development Grant for Research on the Role of Mitochondria in Inclusion Body Myositis
April 28, 2022
Dr. Naddaf is a neurologist, specializing in NM disease, at the Mayo Clinic in Rochester, Minnesota. Dr. Naddaf’s research objective is to describe the precise nature of mitochondrial dysfunction in IBM. His long-term goal is to identify better diagnostic biomarkers for IBM and novel evidence-based, targetable pathways for clinical trials.
-
Dr. Yohei Harada Receives Development Grant for Research on Neuromuscular Ultrasound and Electric Impedance Myography in CMT
April 13, 2022
Yohei Harada, MD, was selected to receive a development grant from the ANF in 2021 for his research project “Neuromuscular Ultrasound and Electric Impedance Myography in CMT type 1A:A Prospective Longitudinal Study.”
-
Racing Laps for a Cure: Brad’s Becker Muscular Dystrophy Story
September 16, 2021
Brad Miller of Ontario, Canada, began experiencing frequent falls and difficulties running as a young boy. “Early on, I had a hard time keeping up with the other kids my age,” Brad explains. “When the other children started climbing trees and fences, it simply wasn’t possible for me.”
-
Kae Tran Creates Beauty While Embracing Life with MD
September 16, 2021
Between the ages of 13 and 14, everyone’s bodies change. But for Kae Tran, this stage of life also meant she started experiencing mild symptoms of muscular dystrophy. After underestimating these symptoms for years, she was officially diagnosed with muscular dystrophy at age 17.
-
So Many Sunrises: Janet and Her Restless Legs Syndrome
September 16, 2021
Janet Yaeger is a painter, decorator, and children’s book author who loves to travel and spend time with her husband of 45 years. Janet Yaeger, of Mt. Vernon, IL, also spent years thinking she was “losing her mind” due to the strange symptoms in her legs that kept her awake.
-
Connection is Key: Michael’s Support for Peripheral Neuropathy
September 16, 2021
Michael Wright of Charlotte, North Carolina enjoys swimming, painting rocks, gardening, binge watching TV shows, trying new restaurants, and being with family. His other hobby, however, takes up a bit more time.
-
Affected Vocal Cords, Unaffected Humor: Carolyn’s Life With Spasmodic Dysphonia
July 28, 2021
Carolyn Bolz has such a passion for public speaking that she often recites her speeches entirely in rhyme. From Riverside, California, Carolyn fills her life with family, faith, Toastmasters Club, and—for the past several years—the National Spasmodic Torticollis Association (NSTA) led by Justin Aquines and Vi Tran.
-
From Post-Polio Syndrome to the Boston Marathon: Mary’s Path to Healing
July 28, 2021
Mary McManus, MSW from Chestnut Hill, Massachusetts is many things. She is a motivational speaker, an author, a poet, and a runner. She also happens to be a polio survivor.
-
Team O for the Win: A Young Boy's Battle Against Duchenne Muscular Dystrophy
February 10, 2021
4 year old Owin Petersen is battling against Duchenne Muscular Dystrophy and Autism Spectrum Disorder.
-
AANEM Seeking Early Career Speaker to Receive the 2020 Surinderjit Singh Young Lectureship Award
December 13, 2019
New for 2020, the American Association of Neuromuscular and Electrodiagnostic Medicine (AANEM) Annual Meeting plenary will include a speaker who is the winner of the Surinderjit Singh Young Lectureship Award. This lecture will honor long-time AANEM member Dr. Surinderjit Singh. The lectureship topic preferably will align with the theme of the 2020 Orlando meeting, Emergent Therapies in Neuromuscular Diseases. There will be plenary speakers to review the current and future landscape in treatments of important neuromuscular diseases such as SMA, ALS, muscular dystrophy and myasthenia gravis.