muscular dystrophy (DMD) an inherited disease involves muscle weakness
awareness day held each year on the 7th September aims at
raising awareness about the disorder
- Dystrophy Annihilation Research Trust (DART) is the
first lab in India focusing on DMD research
Dystrophy Annihilation Research
Trust (DART) is the first lab in India focusing on DMD research. The lab is
working on reversing the absence of dystrophin at the genetic level through
exon skipping. RS Anand, President and founder has been tirelessly working for
this cause since his 15-year-old son Karanveer is affected by DMD. In
recognition for DART's effort, the lab won PTC Therapeutics' 2016 STRIVE award
for working towards innovative solutions to manage DMD.
To commemorate Duchenne Awareness
Day held each year on 7th
September, DART lab held a series of events beginning
September with an awareness marathon and ending on 11th
with the inauguration of a physiotherapy and evaluation centre, art and music
gallery and a bake sale. Duchenne Awareness Day aims at raising public
awareness about this disorder and spreading knowledge. This year's theme
focused on early diagnosis which goes a long way in beginning early treatment
and physiotherapy programs.
‘Duchenne Awareness Day 2016 focuses on early diagnosis which goes a long way in beginning early treatment and physiotherapy programs.’
The first event kick-started to
mark the awareness week was the walkathon organized in association with the
Delhi Public School (DPS), North Bangalore. The walkathon took place at the
Central Library, Cubbon Park on Sunday 4th
September. The principal from
DPS and several children took part to raise public awareness about the
condition. Volunteers from CARE (Charlie's Animal Rescue Centre) also
participated with their canine friends.
The culmination event for the
awareness week was held on 11th
September at the DART India lab in Bangalore. This big
event had a series of activities centered on the health and well-being of the
children with DMD. One of the main attractions was the art gallery showcasing
the artworks of the children. The artistic and expressive talent of the
children was visible in the boards displaying the colorful, attractive pieces.
This big day was inaugurated by
lighting the lamp with researchers, collaborators, friends and well-wishers
like Prof. Upendra Nongthomba from the Indian Institute of Science, Prof. Vijay
Chandru, Chairman, Strand Life Sciences and others. A major milestone for DART
lab was the inauguration of the physiotherapy unit which is important for the
children for rehabilitation and improvement of muscle tone. The unit also has
special equipment for checking out respiratory strength and breathing capacity.
The attraction that excited all
the children and adults alike was the bake sale with its yummy display of
goodies like custard, mousse, cupcakes and pastries. This was inaugurated by children like Karanveer and
Daivik amidst much gusto and enthusiasm.
To add a dash of rhyme and rhythm
to the event, there was the music corner with Karanveer and his rock band. This
music corner was inaugurated by Karanveer's school principal Ms. Manju
Balasubramanyam. The rock band entertained the group with a rendition of Pink
Floyd's "We don't need no education!"
DART also celebrated its
achievement in winning PTC Therapeutics' 2016 STRIVE award by cutting another
cake with icing to match the award certificate! After this began the free flow
of more fun and games and eats with a chaat
corner serving up delicious pani puri
and papdi chaat
all made by parents
of children. The children also enjoyed a round of light games and even won
The event was rounded off with
distribution of a year's worth of medicine to underprivileged children.
For all those who attended the
event, the day was a wonderful memory of joy, happiness and adding to the
health and wellbeing of children with muscular dystrophy.
What is Duchenne Muscular Dystrophy?
Duchenne muscular dystrophy
(DMD) is one of the
nine types of muscular dystrophy. This inherited genetic disorder leads to
progressive muscular degeneration and weakness. The gene that produces the
protein dystrophin is faulty thereby causing a near absence in production of
this vital protein required for muscle tone and strength. This disorder mainly
affects boys and appears in early childhood. It is usually noticed when the
child finds it difficult to attain normal developmental milestones like
standing and walking with ease. DMD is an x-linked disorder thereby transmitted
from mother to son.
Boys with DMD usually need to use
a wheelchair by the age 12-14
years. DMD slowly affects respiratory and cardiac muscles and some boys
may need additional oxygen therapies for steady breathing. Currently there is
no cure except physiotherapy, rehabilitation and steroid treatment. However,
there are many curatives on the anvil like gene
and exon skipping.
- What is Duchenne muscular dystrophy? - (https:www.mda.org/disease/duchenne-muscular-dystrophy)
- Duchenne Muscular Dystrophy (DMD) Awareness Week - (http://www.worldduchenneday.org/)
- What is Duchenne? - (http://www.cureduchenne.org/about-duchenne.html)