Month: June 2021

June 18, 2021June 18, 2021

Get Ready for NORD’s Patient and Family Forum, Set for June 26-27

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the ... Read more

June 18, 2021June 18, 2021

Dietary App May Help CF Patients in Meeting Nutritional Needs

Cystic Fibrosis News Today

A mobile, dietary self-monitoring app used for six months to track food choices and manage pancreatic enzyme replacement therapy (PERT) helped children with cystic fibrosis (CF) to better meet disease-specific ... Read more

June 18, 2021June 18, 2021

Low Levels of Some Fatty Acids Found in Parkinson’s Patients

Parkinson's News Today

People with Parkinson’s disease have lower-than-normal levels of certain fatty acids in their blood, which is not explained by dietary differences, a new study shows. The low levels of some ... Read more

June 18, 2021June 18, 2021

Brainstorm Secures NurOwn-associated Patents in Several Markets

Multiple Sclerosis News Today

In the past year, BrainStorm Cell Therapeutics was granted four patents and is waiting for a fifth, already accepted, meant to provide protection for its NurOwn cell therapy and technology ... Read more

June 18, 2021June 18, 2021

Simple Reading Task May Help Detect Early Disease

Parkinson's News Today

Assessing vowel percentage, or duration, during a simple reading task is an effective method to detect changes in speech rhythm at early stages of Parkinson’s disease, according to a small ... Read more

June 18, 2021June 18, 2021

Younger Age, DMT Use at Early Relapse May Lessen Later Disability

Multiple Sclerosis News Today

People with multiple sclerosis (MS) who are using a disease-modifying therapy — and are at a younger age — when they have a relapse within the first three years of their disease ... Read more

June 18, 2021June 18, 2021

Get Ready for NORD’s Patient and Family Forum, Set for June 26-27

COVID-19 News, Muscular Dystrophy News

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the ... Read more

June 17, 2021June 17, 2021

My Dad Looks Back on My Parkinson’s Diagnosis, Part 1

Parkinson’s News Today Columns

First in a two-part series. With Father’s Day coming up this weekend, I decided to get my father’s thoughts on Parkinson’s disease. I would like to introduce my best friend, ... Read more

June 17, 2021June 17, 2021

How to Make Summer Sizzle Without the Heat (and Symptoms)

Multiple Sclerosis News Today Columns

Summertime is synonymous with long days of warmth, coastal sunsets, boating, and barbecues. A montage of my teenage self at sailing camp, pool parties, and beach bonfires plays to Loggins ... Read more

June 17, 2021June 17, 2021

The Day I Abandoned the Flowers: A Morning Memoir of Ableism

SMA News Today Columns

I rolled up to the checkout counter, rosy cheeks beaming in delightful mimicry of the friendly-faced pansies beside me. The greenhouse air was thick and sweet like the morning sun’s ... Read more

June 17, 2021June 17, 2021

Get Ready for NORD’s Patient and Family Forum, Set for June 26-27

Batten Disease News, COVID-19 News

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the ... Read more

June 17, 2021June 17, 2021

Get Ready for NORD’s Patient and Family Forum, Set for June 26-27

COVID-19 News, Sanfilippo News

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the ... Read more

June 17, 2021June 18, 2021

It’s Year 15 for Jared Sweet Golf Outing DMD Fundraiser

Muscular Dystrophy News

The 15th Annual Jared Sweet Golf Outing, a Michigan event that benefits Parent Project Muscular Dystrophy (PPMD) and raises needed funds for research, is set for Saturday, June 19. To ... Read more

June 17, 2021June 17, 2021

Brineura Delays CLN2 Onset, Progression in Case Study of 2 Siblings

Batten Disease News

Two years of treatment with Brineura (cerliponase alfa) safely and effectively delayed the onset of late-infantile Batten disease in a 23-month-old boy who had not exhibited symptoms when he started ... Read more

June 17, 2021June 17, 2021

Oxbryta in HOPE-KIDS Meeting ‘Urgent Need’ of Children, Ages 4-11

Sickle Cell Disease News

In children with sickle cell disease (SCD), ages 4–11, weight-based doses of Oxbryta (voxelotor) result in similar rises in hemoglobin levels and reductions in red blood cell destruction (hemolysis) to ... Read more