The Qatar National Library is marking the Muscular Dystrophy Duchenne (MDD) awareness month with an engaging talk to be spearheaded by Doha-based comedian and disability advocate Nawaal Akram this September 24, 2018 and it's set to make the general public aware of how it's like to live with the genetic disease in an entertaining, educational, and inspiring lecture.
Muscular dystrophies (MDs) are a group of genetic diseases characterized by progressive weakening of muscles. MDs can manifest at birth, during childhood or even adulthood. There are different types and sub types of muscular dystrophies, and the majority are inherited. Therefore, it is not uncommon to see several members in a family affected by the disorder. There is no known cure yet, and treatment options mostly involve rehabilitation & support to keep patients functional and complication-free and enhance longevity & quality of life.
Born in Doha, Nawaal was diagnosed with MDD at age six. She is an internationally-known advocate for disability rights and founded Muscular Dystrophy Qatar to raise awareness of the condition in the country. She was featured on BBC’s 100 Women programme in 2017, reflecting her inspirational and influential efforts.
At 19, Nawaal is the youngest female who has made it to the prestigious list. “Age didn’t matter to the committee, that’s why I made the cut," she blurted out in an interview with Qatar Tribune.
She also considers herself lucky because she has the rare chance to represent two communities in a positive way—Pakistan, where both of her parents are from, and Qatar, her country of birth.
Besides campaigning for disability, Nawaal also does stand-up comedy and part-time modeling as part of her awareness drive against discrimination on people with disabilities (PWDs).
During her free time, Nawaal attends charity events for Qatar Foundation which gives her a chance to interact with all kinds of people. She said the experience she has gained while volunteering and doing stand-up comedy for Qatar Foundation has been an “eye-opener” at so many levels.
When asked about her goals, Nawaal said, “I just want to gain formal education, hopefully with Qatar Foundation.”
The Muscular Dystrophy MENA support group is based in Qatar has been set up with a goal to improve outcomes and quality of life in patients with muscular dystrophies and their families. The decision to create Muscular dystrophy MENA has been taken to help spread awareness about the difficulties both patients and their families’ experience in adjusting and adapting to their new journey.
They have helped connect people both locally and abroad who are affected by this disease, from parents to caretakers and to children. By continuing to spread awareness, it will help the whole team connect people and create a support network for those who need it the most.
You can use the hashtag #MuscularDystrophyQatar in all social media posts to commemorate the month, and helping the support group spread this relevant message by also tagging them on Instagram.
The lecture's initiative can easily be attained by registering HERE and wearing lime green to acknowledge the cause.
Hurry! Seats are limited!
Venue: Qatar National Library
Date: 24 September 2018
Time: 4:00 - 6:00 PM
Language: Arabic, with English interpretation provided
Target Audience: Public
Is it your first time to hear about MDD as well? If yes, what can you say about the Qatar National Library's initiative to raise awareness regarding this disease? Let us know in the comments and also, don't forget to like and share this article—it keeps us going!
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