|
Parent Project Muscular Dystrophy is a not-for-profit organization founded in 1994 by parents of children with Duchenne and Becker Muscular Dystrophy.
Even though Parent Project Muscular Dystrophy was founded by parents of children with Duchenne and Becker MD, and it’s mission is to improve the treatment, quality of life and long-term outlook for all individuals affected by these dystrophies through research, advocacy, education and compassion, Maxine Strydom has extended this in South Africa to include all children who are affected with MD.
click here to find out more... or contact Maxine Strydom, Tel: 083 662 2189, Email: duchennepp@mdsa.org.za
|
Introduction to DMD
Muscular Dystrophy" is a broad term used to label gene-related disorders that affect muscles throughout the body. There are more than 20 specific genetic disorders considered to be Muscular Dystrophy. Read more...
Are Males With Duchenne Muscular Dystrophy at Risk for Reading Disabilities?
Males with Duchenne muscular dystrophy have subaverage
cognitive capacities and may manifest more
specifically language-related deficits. In the current
study, the information-processing capacity, reading
performance, and behavioral functioning of 25 Dutch
males with Duchenne muscular dystrophy (mean age
10.1 years) were systematically assessed. Read more... (PDF 87Kb)
PPUK Learning and Behaviour toolkit for Duchenne Muscular Dystrophy
To all the families and boys with Duchenne Muscular Dystrophy who have inspired us all. We want
this toolkit to help young men with DMD realise their potential and to lead longer and more fulfilled
lives. Read more... (PDF 342Kb)
Moving and Handling Children
Two pieces of legislation affect the moving and handling
of pupils in school: the Health and Safety at Work Act 1974
recommends that a moving and handling policy is
developed to cover those who need help (children with
special needs, for example) and those who will be doing
the moving and handling; the Manual Handling Operations
Regulations 1992 place a legal obligation on employers
and employees to avoid lifting wherever possible, when
moving and handling objects or people. Read more... (PDF 80Kb)
|
Neuropsychiatric Disorders in Males With
Duchenne Muscular Dystrophy: Frequency
Rate of Attention-Deficit Hyperactivity
Disorder (ADHD), Autism Spectrum Disorder,
and Obsessive–Compulsive Disorder
Using a questionnaire-based study, we assessed the parentreported
prevalence of attention-deficit hyperactivity disorders
(ADHDs), autism spectrum disorders, and obsessive–compulsive
disorders in a group of 351 males with Duchenne muscular
dystrophy. Of the 351 males with Duchenne muscular dystrophy,
11.7% were reported to have a comorbid diagnosis of
ADHD, 3.1% had autism spectrum disorder, and 4.8% had
obsessive–compulsive disorder. It can be concluded that the
incidence of these neuropsychiatric disorders is higher in
Duchenne males than in the normal population. This finding,
together with recent reports on the higher prevalence of
cognitive and learning problems in Duchenne, supports the
view that Duchenne muscular dystrophy is not only a muscular
disorder but also a disorder affecting the brain. It is important
for clinical practice to take in account this heightened association.
More research is needed to examine this association and
its consequences.. Read more... (PDF 66Kb) |
New therapies for Duchenne muscular dystrophy: challenges, prospects and clinical trials
Muscular dystrophies primarily affect skeletal muscle.
Mutations in a large number of genes, mainly encoding
cytoskeletal proteins, cause different forms of dystrophy
that compromise patient mobility and quality of life, and
in the most severe cases lead to complete paralysis and
premature death. Although muscular dystrophies still
lack an effective therapy, several novel strategies are
entering or are ready to enter clinical trials. Here we
review the main experimental strategies, namely drug,
gene and cell therapies, outlining their goals and limitations.
We also provide an update of ongoing or planned
clinical trials based on these strategies. Read more... (PDF 324Kb) |
| |
PTC Latest News
PTC Therapeutics, Inc. (PTC), a biopharmaceutical company focused on the discovery and development of small-molecule drugs targeting post-transcriptional control processes, today announced positive interim data from a Phase 2 clinical trial of PTC124 in patients with Duchenne muscular dystrophy (DMD) due to a nonsense mutation. The results from the first two cohorts of the three-cohort study show that treatment with PTC124 was associated with increases in muscle dystrophin expression and reductions in serum creatinine kinase values in at least 50 percent of evaluable patients. These data were presented today at the 59th American Academy of Neurology (AAN) Annual Meeting. Read more... |
| |
Cardiorespiratoryfunction in the muscular dystrophies
A presentation by Monique Ryan - Children’s Hospital at Westmead
Read more... (PDF 1.13Mb) |
| |
First US Trial of DMD Gene Therapy Under Way
COLUMBUS, Ohio, March 29, 2006 — The first U.S. human gene therapy trial directed at Duchenne muscular dystrophy (DMD) was launched yesterday at Columbus (Ohio) Children’s Hospital, the Muscular Dystrophy Association (MDA), Children’s Hospital, and Asklepios Biopharmaceutical Inc. (AskBio) announced today. Read more...
New Prospects for treating Muscular Dystrophy
A study on mice suggests that a type of stem cells found in blood vessels may someday be able to regenerate wasting muscle in muscular dystrophy (MD) patients. Read more...
Cardiac MRI at CCHMC
Presentation by William GottliebsonMS MD, Cardiology, CCHMC. Read more... (PDF 730kb)
Consensus statement on the role of glucocorticoid corticosteroids in Duchenne muscular dystrophy
This document reviews the evidence and, presents a protocol of assessment and management for the use of glucocorticoid corticosteroids in Duchenne Muscular Dystrophy (DMD). Read more... (MSWord 174kb)
Steroids/Nutritional Supplements/Antibiotics
There are multiple steroid/supplemental treatments for DMD although there is little agreement (even among researchers and clinicians) about many of them. Read more... (MSWord 40kb) |
Exon skipping as a potential therapy for DMD
Scientists and Clinicians from all over the world gathered in Monaco to discuss the recent advances in Exon skipping as a potential therapy for DMD. Read more...
"I WILL" heavy gauge wristbands
PPMD is proud to offer these heavy gauge rubber wristbands (similar in style to the CANSA bands) to help the DMD community show their strength and determination. Please note: these are the only wrist bands that benefit Duchenne muscular dystrophy South Africa directly.
Wristbands are black and white with the phrase "I WILL" and the PPMD logo stamped into the rubber. And they are now available, contact maxine to order.
Frequently asked questions about the use of splints and bracing
Orthotists, the people who are specially trained in making splints, have devised a system of naming splints depending on which joints they control. AFO's are ankle-foot orthoses and come from the toes or mid-foot to below the knee. Read more...
UF doctors cast net to help muscular dystrophy patients
GAINESVILLE, Fla. — Patients and families affected by muscular dystrophy urgently need to take practical steps to help slow the destructive course of the disease, say University of Florida researchers who today (Sept. 2, 2005) have launched a Web-based effort to collect information from people coping with the illness. Read more... (PDF 176kb) |
| |
2005 Annual Conference Powerpoint Presentations
All presentations have been converted to PDFs for your convenience. Below you will find the title and author of each available PDF. Some of these files are quite large, please be patient while downloading. Read more... (MSWord 38kb) |
Introducing Parent Project Muscular Dystrophy's Duchenne Muscular Dystrophy CD
Giving a Face to DMD
Understanding the disease and Guidelines for CARE and Management
State of the art, comprehensive care for your son. With the diagnosis of Duchenne Muscular Dystrophy, families are faced with so many decisions and often the information variable and confusing. Parent Project Muscular Dystrophy has worked hard and sought the advice many DMD experts to develop a two-set CD to assist families, health care experts and physicians provide the best treatment and care available for young men with Duchenne Muscular Dystrophy.
To help families better understand the diagnosis, the first CD provides an overview of Duchenne Muscular Dystrophy, its cause and how a diagnosis is reached. The second CD offers more information on issues related to care and management of Duchenne.
| Disc ONE |
Disc TWO |
Understanding Duchenne
Introduction
What is DMD?
What causes the condition?
Inheritance
Genetics
Diagnosis
How Duchenne Affects the Body
Musculoskeletal
Musculoskeletal
Heart Function
Cognition and Learning |
Current Options for Care and Management
Coordination of Care
Corticosteroid Therapy
Musculoskeletal Management
Physical Therapy
-Active Exercise
-Hydrotherapy
-Stretches
-Posture in Wheelchairs
Orthotics
Scoliosis and Surgery
Respiratory and Cardiac Care
Respiratory Management
Monitoring and Care of the Heart
Early Learning Strategies |
Although we know, for some of you, this diagnosis is very new, while others have an intimate knowledge of the disease, we are here to help and continuously investigate ways to improve care for your son. We believe this CD to be an excellent source of information to help you help your son.
The CD is available now. To order your CD please email Maxine at duchennepp@mdsa.org.za
| | 
Click to View August Newsletter
Click to View Published Advert
|
