HCP SMA News Today
  • e-Newsletter
  • Home
  • HCP Specialties
    • Genetic Counselors
    • Orthopedics
    • Pulmonologists
    • Nursing
    • Neurologists
    • Social Workers
    • Physical Therapists
    • Nutritionists
    • Radiologists
    • Pediatricians
    • Urologists
  • Core SMA Topics
  • About
Select Page
Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds

Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds

by Hawken Miller | Mar 30, 2021 | News

As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life is an expensive undertaking.  But exactly how expensive — in terms of direct and indirect costs across rare disease populations — might still come as a surprise:...
Pink, Green, Blue and Purple Lights Illuminated World for Rare Disease Day

Pink, Green, Blue and Purple Lights Illuminated World for Rare Disease Day

by Hawken Miller | Mar 9, 2021 | News

Many diseases have their own awareness color — breast cancer is pink, muscular dystrophy is green, and AIDS is red, for example — but what’s the significance of pink, green, blue, and purple lights side-by-side? These are the colors most often used to represent...
Mother Raises 4 Adopted Girls From China With SMA, Chronic Illnesses

Mother Raises 4 Adopted Girls From China With SMA, Chronic Illnesses

by Hawken Miller | Feb 26, 2021 | News

When Josylnn Jones McLaughlin moved to Guangzhou, China, to teach conversational English in 2012, she didn’t expect to bring home two girls, one with spinal muscular atrophy (SMA) and the other with spina bifida, when she returned to Anderson, S.C., more than a year...
Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

by Hawken Miller | Feb 25, 2021 | News

Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. But from a young age, he also learned how to turn those trials into triumphs. At age 9, a stroke due to his disease left him paralyzed on the left...

Video

SMA – Core Topics

  • What is SMA?
  • Types of SMA
    • Spinal Muscular Atrophy Type 0
    • Spinal Muscular Atrophy Type 1
      • SMA Type 1 Subtypes
    • Spinal Muscular Atrophy Type 2
      • SMA Type 2 Subtypes
    • Spinal Muscular Atrophy Type 3
      • SMA Type 3 Subtypes
    • Spinal Muscular Atrophy Type 4
    • Rare Forms of SMA
    • SMN1-negative variants resembling Adult Onset SMA
    • SMN1-negative variants resembling Infantile Onset SMA
    • SMN1-negative variants resembling Childhood Onset SMA
    • Pre-Symptomatic Intervention 
  • Genetics and Epidemiology
    • Genetic Counseling
    • Genetic Screening
    • The Role of MicroRNA
    • MUNI Biomarker for SMA
  • Signs and Symptoms
    • Pain
    • Weakness and Hypotonia
  • Comorbid Conditions
    • Abnormal Fatty Acid Oxidation in SMA
    • Cardiac Disease
    • Enuresis and Urinary Incontinence
    • Eosinophilic Oesophagitis in SMA
    • Pancreatic Dysfunction
    • SMA Associated with Progressive Myoclonic Epilepsy
    • Sleep Disorders in SMA
  • Diagnosis
    • Biomarkers
    • Electromyography
    • Muscle Biopsy
    • MRI
  • Differential Diagnosis
    • Prenatal/Neonatal Onset
    • Childhood Onset
    • Adult Onset
  • Disease-Modifying Therapy
    • SPINRAZA (nusinersen)
      • Administering Nusinersen
      • Alternate Nusinersen Administration Strategies
      • How to Administer Nusinersen in Adolescents 
      • Nusinersen: What is Still Unclear
      • Patient and Parent Perspectives on Nusinersen
    • ZOLGENSMA (AVXS-101)
      • Administering Zolgensma
      • Zolgensma: Caregiver Counseling
    • EVRYSDI (Risdiplam)
    • Treatments in Development
      • Branaplam
      • Olesoxime
      • Reldesemtiv
      • Salbutamol
      • Valproic Acid
      • Combined Drug Therapy
      • Disease Modifying Therapies in Spinal Muscular Atrophy: Preclinical Products
  • Testing
    • Meaningful Change in SMA
  • Orthopedic Surgery
    • Chest Deformity, Hip Instability, Contractures, and Fractures
    • Contractures
    • Fractures
    • Scoliosis
    • Scoliosis Surgery
  • Discussing Clinical Trials
  • Respiratory Care
    • Airway Clearance
    • Breathing Difficulty
    • In the Acutely Ill Child
    • In the Well Child
    • Intubation and Extubation 
    • Oxygenation and Breathing 
    • Practical Guidance for Breathing Problems
    • Perioperative Considerations
    • Retained Secretions and Aspiration
  • Physical Therapy
  • Home Modifications
  • Feeding, GERD, and GI Issues
    • Gastrointestinal Access
    • GERD
    • In SMA Patients Who Can Sit Up
    • In SMA Patients Who Cannot Sit Up
  • Delayed Growth
  • School and Educational Concerns
    • Awareness and Attitudes
  • Maximizing Quality of Life
  • Assistive Devices
    • Oxygenation and Breathing 
    • Mobility Devices
    • Braces
    • Feeding
  • Speech Therapy
  • Occupational Therapy
  • Nutrition
    • Assessment of Growth and Growth Delay
    • Chewing and Swallowing Problems
    • Fluids and Hydration
    • Nutrition and Supplementation
  • Medical Transportation and Hospitalization
    • Hospitalization for SMA Patients
  • Pain Management
  • Patient & Caregiver Concerns
    • Caregiver Support
    • Effects on Home, School, and Leisure
    • Maximizing Quality of Life
    • Psychological Support
    • What Living with SMA is Like: A Qualitative Research Perspective
  • Prognosis
  • Palliative Care

HCP — SMA News Today

BioNews Services, LLC

3 W Garden St
Suite 354
Pensacola, FL 32502
Email: [email protected]
Phone: 1-800-936-1363

BioNews Services, LLC
3 W Garden St
Suite 700
Pensacola, FL 32502
Email: [email protected]
Phone: +1-800-936-1363
  • Contact Us
  • Terms of Use
  • Privacy Policy

Disclaimer:

SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

We use cookies to enhance your experience on our website. Privacy Policy Accept