On September 7th, we observe the 11th World Duchenne Awareness Day (WDAD), aiming to raise awareness for people living with Duchenne Muscular Dystrophy (DMD).
This year's theme, 𝗥𝗮𝗶𝘀𝗲 𝘆𝗼𝘂𝗿 𝘃𝗼𝗶𝗰𝗲 𝗳𝗼𝗿 𝗗𝘂𝗰𝗵𝗲𝗻𝗻𝗲, focuses on fighting discrimination and the need for better accessibility in all aspects of life. In this video, Elizabeth Vroom, chair of the World Duchenne Organization, shares an important message for this day.
On September 7th, we will celebrate the 11th World Duchenne Awareness Day, and that's a special day around the globe. It has been growing since we started in 2014 and this day is important to make sure that the lives of people with Duchenne improve around the globe. And this year the theme, the special theme of the world duchenne awareness day is Raise your Voice for Duchenne, not only for the Duchenne community, but really for society. We want everybody to help us to make sure that people with Duchenne, can live a good life and are not hindered by problems for disabled people like we all want to fight for. You know, think about accessibility. Accessibility for public transportation, for leisure, for jobs, for education. Accessibility is everywhere and it's relevant and it's described very clearly in the legislation. And the proposals from the United Nations and the European Committee that this is a very important issue, accessibility, There are human rights, but again, a lot of people with Duchenne are still hindered by the lack of implementation. And discrimination is considered something which is really relevant in Duchenne as well. It is not the worst thing happening to the patient, but all organizations are working on it. We try to make progress there as well and independent living, which should be a human right as well, is something we have to fight for around the globe, in every country. We should do our very best to make this life possible or as good as it is possible within their position. So with this, the United Nation very clearly said when they recognize the world duchenne awareness day that access to proper Diagnosis is very important for Duchenne and that's also something we have to fight for, that patients have access to good care, but also to proper diagnosis, because without a diagnosis it's really hard to get the support you need. So I call on all of you to help us to fight these situations, the discrimination, the lack of accessibility and make life better for everyone with Duchenne.
On September 7th, we observe the 11th World Duchenne Awareness Day (WDAD), aiming to raise awareness for people living with Duchenne Muscular Dystrophy (DMD).
This year's theme, 𝗥𝗮𝗶𝘀𝗲 𝘆𝗼𝘂𝗿 𝘃𝗼𝗶𝗰𝗲 𝗳𝗼𝗿 𝗗𝘂𝗰𝗵𝗲𝗻𝗻𝗲, focuses on fighting discrimination and the need for better accessibility in all aspects of life. In this video, Elizabeth Vroom, chair of the World Duchenne Organization, shares an important message for this day.
Harvard Chan School faculty, researchers, and students are working to reduce gun violence, make childbirth safer, transform cancer care, advocate for smarter climate policies, and much more. We are working to improve health and promote equity so all people can thrive.
Help build a world where everyone can thrive by joining us on Harvard Chan Giving Day on March 6. Learn more by visiting hsph.me/givingday
This was a very emotional interview for me. What an incredible story of resilience and courage!
All episodes (audio and video) now have chapters to stay on track and easily rewind. This episode is almost 2hrs long (so please use the chapters option!).
Let me know what was your favourite part in the comments section. Enjoy!
#podcast#motivation#africatech#godfirst
We've partnered with Riverside.fm to make our mission to reach guests from all corners of the African Continent and share their stories through high-quality audio and video.
A few days ago, we had the privilege of sitting down for a conversation with Gilbert Kimeng and we talked about his fight and victory with cancer, his love for the Bible, edu tech and travel to help Africans on what it means to put God first through the gift of technology.
See the full interview here: https://lnkd.in/dVV4R9bg
The “Land as Healer” breakout session at the #FNHASummit2024 showcased the off-the-grid Unist’ot’en Healing Centre located on Wet’suwet’en territory.
The FNHA’s Carla Lewis moderated a discussion with Dr. Carla Tait, Abraham Ramirez, Freda Huson, Brenda Michell and Wet’suwet’en youth Savannah Prince.
For more information on the land-based healing programs provided at the Unist’ot’en Healing Centre visit their website: https://lnkd.in/gsgJ7GA3
An oldie, but a goodie.
As we sit in these global moments of pain, suffering, and outrage, we are not only called to act toward what we desire of the world, but we are compelled to be differently—to transform ourselves, individually and collectively, to force systems and institutions to be-do differently for collective justice.
What is your revolution that will spark our collective evolution?
https://lnkd.in/gQkvEuP3
As practitioners, we know how transformative self-compassion can be – especially when it comes to healing shame.
To learn directly from Tara Brach, PhD check out our program, Radical Compassion – An Essential Key to Overcoming Shame, Self-Judgment, and Suffering.
Registration is now open! ➡️ https://lnkd.in/esDg2BG6
*bomb sirens heard in the background*
Them: It's fine, just the country testing out the system. We're used to it, happening every other day as we're so near the war!
Me: 😳
Gosh, talk about the resilience! 🙌🏽
So here's us - Tengku Elysha and I wrapping up our online training session for Cogo and NeeuroFIT to a fantastic group of psychiatrists and psychologists over in Romania.
If you're curious about how Cogo and NeeuroFIT can level up your current intervention plans, hit me up! We can chat about how we can integrate neurotechnology and cognitive training into your practice - for children, adults and seniors!
Neeuro
Join us as Bridge to the Faculty (B2F) scholars share their experiences and respective research with the UIC community. Dr. Azadeh Safaeian from the Department of Disability and Human Development will present the argument of her current book project, "Toward a Minor Theory of Trauma: Postcolonial Subject in the Iran-Iraq War." Located at the intersection of critical disability studies and trauma theory, her research attends to the discursive and non-discursive representations of somatic pain and psychological trauma in the literature and cinemas of minority groups in the context of the Middle East.
Learn more: https://lnkd.in/gcKgndTA
Compassion can transform how we live together. We are so pleased to have Alex Nunn of Action for Happiness supporting and joining this movement of compassionate action! Learn more about his work and how you can get involved in changing our world for the better: https://bit.ly/3UIuZCg
The impacts of achondroplasia go well beyond height. Through our Lifetime Impact Study for Achondroplasia (LISA) we’re committed to learning more and revealing the burden of pain and other challenges for people with achondroplasia in Latin America. Learn more: https://bit.ly/3wgkFJ8
Pediatrician at CoRSU Hospital
2moWe certainly ought to make their lives better especially with regards ensuring accessibility to proper diagnosis. In this together