Posts by: Mary Chapman

A recent survey about medical cannabis use by Parkinson’s disease (PD) patients in the U.S. found one-quarter of its more than 1,000 respondents had used cannabis in the last six months, and ... Read more

March 5, 2021March 5, 2021

It’s March – Make Time for MS Awareness

Multiple Sclerosis News Today

Activities are underway to mark Multiple Sclerosis Awareness Month, set aside each year to call attention to the neurodegenerative disorder estimated to affect almost 1 million U.S. residents. Patients, caregivers, family, ... Read more

March 5, 2021March 5, 2021

Events Raise Visibility, Support of Bleeding Disorders During Awareness Month

Hemophilia News Today

Activities are underway to mark Bleeding Disorders Awareness Month, set aside each March to call attention to such disorders as hemophilia and von Willebrand disease, and the more than three ... Read more

March 4, 2021March 4, 2021

‘Save Connor’ Campaign Ramps Up Ahead of Deadlines

Sanfilippo News

Impassioned videos, including a new one about a 12-year-old who has Sanfilippo syndrome and his parents’ battle to save him, have raised more than $400,000 toward an unprecedented clinical study that ... Read more

March 3, 2021March 3, 2021

Shoshin for AADC Caregivers

AADC News

Providing constant care and supervision to a child with a chronic disease such as aromatic l-amino acid decarboxylase (AADC) deficiency can be mentally, physically, and emotionally draining. A Japanese concept ... Read more

March 2, 2021March 3, 2021

Foundations Merge to Do More for People With Lung Diseases

COPD News Today

Two Montreal-based foundations are joining forces to boost research and care into complex and chronic respiratory disorders, including chronic obstructive pulmonary disease (COPD). The merging of the McGill University Health Centre ... Read more

March 1, 2021March 1, 2021

Shoshin for aHUS Patients

aHUS News

If you are living with a chronic disease such as atypical hemolytic uremic syndrome (aHUS), a concept called shoshin may help to change your perspective, allowing you see the world, ... Read more

March 1, 2021March 1, 2021

ALS Association Survey Focuses on Caregiver Needs and Well-being

ALS News Today

ALS Focus has opened a new survey looking specifically at the needs and challenges of caregiving for people with amyotrophic lateral sclerosis (ALS). Survey responses are expected to influence ALS programs ... Read more

February 25, 2021February 25, 2021

Neuro Key ‘Open Door’ Booklet Gives Voice to FA Patient, Caregiver Stories

Friedreich's Ataxia News

Real-life stories from people affected by Friedreich’s ataxia (FA) — featured in a new educational resource —capture the challenges of living with a complex and largely misunderstood disorder, and help to ... Read more

February 24, 2021February 24, 2021

Cure SMA Offers Free Virtual Therapy Sessions

COVID-19 News, SMA News Today

To help with stress or anxiety brought on by the COVID-19 pandemic or other issues, adult patients with spinal muscular atrophy (SMA) in the U.S. are being offered up to three ... Read more

February 24, 2021February 24, 2021

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Charcot-Marie-Tooth News, COVID-19 News

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a ... Read more

February 24, 2021February 24, 2021