New MDA Educational Program Offers a 360-Degree View of ALS Care

MDA’s new Medical Education department was established in response to the growing need for clinician education in neuromuscular diseases. We are pleased to present our first program highlighting amyotrophic lateral sclerosis (ALS): a PowerPoint slide deck. ALS is a motor neuron disease that leads to the widespread loss of muscle use. Patients diagnosed with ALS . . .

Read More

At a Cedars-Sinai Care Center, Dr. Robert Baloh Looks Under — and Ahead of — the Microscope for CMT and ALS

Even though the Martinez family lives in Burbank, Calif., within an hour’s drive to Los Angeles’ Cedars-Sinai Medical Center, their road to the hospital’s specialized clinics — to Dr. Robert Baloh and his work there — was a long one. Daniel and Gladis Martinez have two daughters: Genesis, 15, and Isabella, 14, born just 10 . . .

Read More

Participants Needed for a Pilot Study of a New Diagnostic Device

Dr. Perry Mansfield at the SENTA Clinic in San Diego, Calif., is looking for healthy individuals and patients with neuromuscular disease who have documented neurologic pharyngeal muscle dysfunction (dysfunction of the voluntary muscles that form the pharynx) to participate in a pilot study. This study will help to prove the diagnostic consistency of transmembrane electromyography . . .

Read More

The ALS Association, ALS Finding A Cure, and MDA Co-Fund Clinical Trial Grant to Study Restoring Immune System Function to Treat ALS

The ALS Association, ALS Finding a Cure (ALSFAC), and MDA announced they have jointly awarded a clinical trial grant totaling more than $2.5 million over two-and-a-half years to leading investigators at the Houston Methodist Neurological Institute and Massachusetts General Hospital. The principal investigator is Stanley Appel, MD, co-director of Houston Methodist Neurological Institute, chair of . . .

Read More

2109 Clinical & Scientific Conference Highlight: Healthcare Technology Moves Out of the Clinic, Into the Pocket

Computers, laptops, tablets, and smartphones have become ubiquitous features of our daily lives — but not of our healthcare. At least, not yet. But a group of physicians at MDA’s 2019 Clinical & Scientific Conference made a few convincing cases for increased use of personal electronics in healthcare and clinical trials. Dr. James Berry of . . .

Read More

2019 Clinical & Scientific Conference Highlight: Physical, Occupational, and Speech Therapy Considerations in NMD

During a late-morning session on the final day of the 2019 Clinical & Scientific Conference, five healthcare professionals — Laurie Sterling, a speech therapist at the Texas Children’s Hospital; Dr. Roxanna Bendixen, an occupational therapist and assistant professor at the University of Pittsburgh; Jennifer Chapin, a speech therapist at the University of Florida; Dr. Melissa . . .

Read More

Clinical Trial Alert: Biogen Seeks Participants for a Phase 3 SOD1-ALS Study

Researchers at Biogen are looking for participants with amyotrophic lateral sclerosis (ALS) to participate in the VALOR Phase 3 study designed to help researchers evaluate the effects of BIIB067 on disease progression in patients with ALS caused by superoxide disumtase 1 (SOD1) mutation (SOD1-ALS). In ALS, motor neurons degenerate or die and stop sending messages . . .

Read More

Do You Know ALS? Meet Dr. Cudkowicz.

Dr. Merit Cudkowicz, chief of Neurology at Massachusetts General Hospital, where the ALS Multidisciplinary Clinic in the Healey Center for ALS is associated with MDA, is dedicated to performing academic-led clinical trials in amyotrophic lateral sclerosis (ALS). Her internationally renowned research has led to advanced treatments for people with living with ALS. What role has . . .

Read More

Do You Know ALS? Meet Tim.

In 2016, former NFL player Tim Green was diagnosed with amyotrophic lateral sclerosis (ALS) and was private about his new life at first. Over time, Tim has become an advocate for research to find new treatments and cures, and he found strength in his doctor and his family. He shared his story on “60 Minutes” . . .

Read More

Do You Know ALS? Meet Sunny.

Just two weeks before her 28th birthday, and after a long search for an explanation for a series of symptoms, Sunny Brous was diagnosed with amyotrophic lateral sclerosis (ALS). Sunny has worked to remain independent and raise awareness to change the future of ALS. Her mantra is, “No apologies, no excuses, no regrets.” Can you . . .

Read More