December 20, 2019December 21, 2019
Caregivers in Search of Christmas Spirit
Alzheimers News Today
“I wish we could put up some of the Christmas spirit in jars and open a jar of it ... Read more
December 20, 2019December 21, 2019
Childhood Abuse May Increase Risk of Developing SLE in Adulthood, Study Finds
Lupus News Today
Physical and emotional abuse during childhood may increase the risk of developing systemic lupus erythematosus (SLE) later in life, ... Read more
December 20, 2019December 20, 2019
Trial Seeks Participants to Study AVB-500 Plus Imfinzi in Platinum-resistant Ovarian Cancers
Ovarian Cancer News Today
Aravive is recruiting participants for a Phase 1/2 clinical trial assessing a combination of its experimental treatment AVB-500 plus ... Read more
December 20, 2019December 20, 2019
$2.7M NIH Grant Supports Study of Interval Treadmill Training in Children with CP
Cerebral Palsy News Today
The Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD), a part of the National Institutes ... Read more
December 20, 2019December 20, 2019
Vyondys 53 Available to Duchenne Patients in the U.S.
Muscular Dystrophy News
The newly approved therapy Vyondys 53 (golodirsen) is available for immediate distribution to treat people with Duchenne muscular dystrophy (DMD) amenable ... Read more
December 20, 2019December 20, 2019
Surviving Heartbreak When You’re Chronically Ill
Endometriosis News
The end of this year has turned into the toughest of times. I’ve spent the past weeks in excruciating ... Read more
December 20, 2019December 20, 2019
In 2019, I Learned to Feel My Emotions and Pain
Pulmonary Hypertension News
I have spent the majority of my 28 years suppressing my emotions. I had this idea that strength meant ... Read more
December 20, 2019December 20, 2019
A Guide to Managing Stress During the Holiday Season
Friedreichs Ataxia News
It’s the most wonderful time of the year! Isn’t that what everyone is singing and saying? Christmas music is ... Read more
December 20, 2019December 20, 2019
Staying Strong as I Reflect with Gratitude on My Best Year with Lupus
Lupus News Today
How would I describe myself in one word? Strong. Of all of the adjectives I could use to sum ... Read more
December 20, 2019December 20, 2019
How Huntington’s Affects My View of Christmas
Huntingtons Disease News
Every family, regardless of religion or background, has at least one time of year that is special to them. ... Read more
December 20, 2019December 20, 2019
Servier and UCL Partner to Battle Scleroderma and Lupus
Scleroderma News
A new collaboration between Servier Pharmaceuticals and University College London (UCL) seeks to speed the discovery of new therapies for ... Read more
December 20, 2019December 20, 2019
Switching Chemo Types in Initial Combo May Help Myeloma Patients with Poor Response, Study Says
Myeloma Research News
For people with multiple myeloma who don’t respond well to an initial type of therapy, quickly switching to another ... Read more

December 20, 2019December 21, 2019

LHON Natural History Study Highlights Improvements in Visual Acuity From Lumevoq Treatment

Patients with Leber hereditary optic neuropathy (LHON), a rare genetic mitochondrial disease that causes vision loss, experienced a dramatic and mostly irreversible loss of visual acuity, according to an ... Read more

December 19, 2019December 20, 2019

Having a Role Model Helped Me to Heal

Huntingtons Disease News

I was an emotional mess when I first met Jeff Carroll at a Huntington’s disease conference. My recent gene-positive diagnosis was on my mind. I couldn’t talk about it ... Read more

December 19, 2019December 19, 2019

New IGNITE DMD Trial Data Promising for SGT-001, Company Working to Lift Clinical Hold

Muscular Dystrophy News

Treatment with gene therapy candidate SGT-001 may lead to clinically meaningful improvements for patients with Duchenne muscular dystrophy (DMD), new data from two participants in the Phase 1/2 IGNITE ... Read more

December 19, 2019December 19, 2019

Gaucher Treatment Can Partly Correct Altered Cell Levels in Bone Marrow, Study Says

Gaucher Disease News

People with Gaucher disease (GD) show high levels of antibody-making plasma cells in bone marrow areas rich in abnormal Gaucher cells, a study reports. However, treatment with specific GD ... Read more

December 19, 2019December 21, 2019

FDA Grants Breakthrough Therapy Status to Tucatinib for Advanced HER2-Positive Breast Cancer

Breast Cancer News

The U.S. Food and Drug Administration (FDA) has granted breakthrough therapy designation to Seattle Genetics’ tucatinib, in combination with trastuzumab and Xeloda (capecitabine), for the treatment of patients with ... Read more

December 19, 2019December 20, 2019

Lynparza Particularly Effective in Prostate Cancer Patients Carrying BRCA Mutations, Phase 2 Study Shows

Prostate Cancer News Today

Lynparza (olaparib), a breast and ovarian cancer treatment, is also showing promising results in men with metastatic castration-resistant prostate cancer (mCRPC) who carry mutations in DNA repair genes, particularly ... Read more

December 19, 2019December 19, 2019

How I Plan to Prioritize Rest This Christmas

Endometriosis News

It’s been a big year for me, and 2020 is poised to be even bigger. My coaching program starts in January, and I want to be in the best ... Read more

December 19, 2019December 19, 2019

Martial Arts Benefits My Body, Mind, and Soul

IBD News Today

This time last year, I became a Kyo Sa Nim, a second-degree black belt in the Korean martial art Mu Sool Won. A first-degree black belt usually trains for ... Read more

December 19, 2019December 19, 2019

The Employment Gap for People with Disabilities Is Too Wide

Muscular Dystrophy News

The world of employment and disabilities is difficult for me to understand. Readers of my column have always been good about giving feedback. I’d love your input on this ... Read more

December 19, 2019December 19, 2019

Reldesemtiv Earns FDA’s Orphan Drug Designation for ALS Treatment

ALS News Today

The U.S. Food and Drug Administration (FDA) has granted orphan drug status to Cytokinetics and Astellas Pharma‘s reldesemtiv for the treatment of amyotrophic lateral sclerosis (ALS), the companies announced. Reldesemtiv, ... Read more

December 19, 2019December 19, 2019

Study Finds Abnormal Neural Development May Contribute to Huntington’s Disease, Offering New Therapeutic Strategy

Huntingtons Disease News

Abnormal development of neural tissues may precede neurodegeneration in early-onset juvenile forms of Huntington’s disease, a recent study has found. Researchers also showed how targeting the cellular pathway involved ... Read more

December 19, 2019December 19, 2019

Care of Children with Bronchiectasis Lags Those with Cystic Fibrosis, Australian Study Finds

Bronchiectasis News Today

Children with bronchiectasis have poorer lung function than those with cystic fibrosis (CF), likely because of the differing levels of care given to children with these conditions, an Australian study ... Read more

December 19, 2019December 19, 2019

Phase 1 Trial Testing Chondrial’s Potential FA Therapy, CTI-1601, Starts Dosing Patients

Friedreichs Ataxia News

A Phase 1 trial evaluating Chondrial Therapeutic’s investigational therapy CTI-1601 as a treatment for Friedreich’s ataxia patients has started dosing patients. The therapy was recently granted rare pediatric disease ... Read more

December 19, 2019December 19, 2019

NIH Grant Backs Project to Develop New Pain Therapy for SCD Patients

Sickle Cell Anemia News

The National Institutes of Health (NIH) has awarded a grant to researchers at Carnegie Mellon University’s College of Engineering to support their project to develop a non-invasive, non-toxic and non-addictive pain ... Read more

December 18, 2019December 19, 2019

FDA Expands Xtandi Approval to Include Metastatic Castration-sensitive Prostate Cancers

Prostate Cancer News Today

The U.S. Food and Drug Administration (FDA) has agreed to expand Xtandi‘s (enzalutamide) approval to include men whose metastatic prostate cancer still responds to hormone therapy, Astellas Pharma and Pfizer, the treatment’s developers, ... Read more

December 18, 2019December 18, 2019

Monitoring System May Help with Wheelchair Use in Dyskinetic Cerebral Palsy, Study Suggests

Cerebral Palsy News Today

A prototype of a portable data logger that can be attached to a wheelchair’s control mechanism may lead to tailored training and safer wheelchair use for people with dyskinetic ... Read more

Caregivers in Search of Christmas Spirit

Childhood Abuse May Increase Risk of Developing SLE in Adulthood, Study Finds

Trial Seeks Participants to Study AVB-500 Plus Imfinzi in Platinum-resistant Ovarian Cancers

$2.7M NIH Grant Supports Study of Interval Treadmill Training in Children with CP

Vyondys 53 Available to Duchenne Patients in the U.S.

Surviving Heartbreak When You’re Chronically Ill

In 2019, I Learned to Feel My Emotions and Pain

A Guide to Managing Stress During the Holiday Season

Staying Strong as I Reflect with Gratitude on My Best Year with Lupus

How Huntington’s Affects My View of Christmas

Servier and UCL Partner to Battle Scleroderma and Lupus

Switching Chemo Types in Initial Combo May Help Myeloma Patients with Poor Response, Study Says