Just like previous years, Pope Francis is supporting the effort of World Duchenne Awareness Day to raise awareness for Duchenne and Becker muscular dystrophy. We are honored and grateful for Pope Francis for his generous support in the global effort in creating better lives for those affected by DMD and BMD.
With the support of Mr. Santiago Ordoñez, president of ADM Argentina and WDO Board Member, we have received the following message from Pope Francis:
“I join this new World Duchenne Awareness Day, I send my warm regards joining in the hope of a better future for all. I pray for you all and, please, I also ask you to do it for me.
The Covid-19 pandemic has a strong impact on the life of every single individual and family, modifying our time and habits. This experience that the entire world is living shows how we can be stronger only when we are together. This is the message that the World Duchenne Organization is launching for the World Duchenne Day on September 7.
We can be stronger only together during a global pandemic. But we can be stronger together every day even when the emergency will finish. Because our cause will still be there, our engagement will still be there and we need every single person to be involved.
The Covid-19 pandemic is having a strong impact on the life of every single individual and family, modifying our time and habits. It changed our daily life globally but it cannot delete our projects and our voice.
We as Duchenne Community know very well what it means to live in moments of isolation, to face emergencies, to adapt our daily lives to clinical care. We know the meaning of specific words like ‘fear’, ‘pain’, ‘distance’ but at the same time we are trying to turn ‘fear’ into ‘hope’, ‘pain’ into ‘resilience’ and ‘distance’ into ‘closeness’.
For this reason, we have decided to share an important message globally linked to the general awareness of WDAD2020, a message that many people have experienced and are still experiencing this year: together we are stronger.
We can be stronger only together during a global pandemic. But we can be stronger together every day even when the emergency will finish. Because our cause will still be there, our engagement will still be there and we need every single person to be involved.
So, let’s raise our voice and work on the general awareness of WDAD2020. With our strength and creativity, let’s make a difference! What can we do? Let’s start in 5 simple steps!
1. Promote the new WDAD2020 video
The promo video last year was very useful to raise awareness of WDAD. We are working on the creation of a new one that will bring the message “Together we are stronger” with realistic moments lived by our families.
The video will be launched on August 24 and will be translated in several languages. Nicoletta Madia is sharing the text to be translated and is in charge on the creation and dissemination of this video. For info, do not hesitate to contact her by writing at [email protected].
2. Illuminate your cities
Contact your local institutions to illuminate your monuments in red! This action is very simple to share the message in a simple way. If you need some examples on how to ask for this please have a look at How to light up a monument in your city or contact us.
3. Contact your local media
Together with the promo video, a press kit will be available soon so you can contact your local media to promote WDAD2020.
4. Promote digital action
Create a digital action for WDAD2020 to raise awareness of the day involving a large audience. Some ideas? You can organize a web press conference, live streaming presenting WDAD on your social media, or local fundraising digital activities.
We will be happy to share your photos and information about the activities you organise for WDAD2020. Please, tag your social media efforts with #WDAD2020 or send your materials to our coordinators Nicoletta Madia and Suzie-Ann Bakker at [email protected].
5. Digital balloons
The red balloon is still a symbol of WDAD2020. But is important, due to the respect of the environment, to release virtual balloons. For this reason, we will ask to all the communities of the world to post the red balloon on a specific time on September 7: this will be a global digital launch!
For questions and ideas regarding the general awareness of WDAD2020, please contact Nicoletta Madia at [email protected] and Suzie-Ann Bakker at [email protected]
We really count on you to make OUR day a GREAT day!
September 7 is World Duchenne Awareness Day. On this day we raise awareness for Duchenne and Becker muscular dystrophy around the globe. As every year, we have a special theme that deserves more attention. This year that will be Duchenne and the brain.
Online conference on Duchenne and the Brain
On September 7, the World Duchenne Organization is hosting a livestream where experts share their knowledge on DMD/BMD and the brain. The livestream is available as recording afterwards. This online event is for clinicians, researchers, families and teachers. We can all learn something from this important aspect in Duchenne and Becker MD.
This conference has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 847826 – BIND project
Program
In the two-hour livestream, experts will provide their expertise in the field of DMD/BMD. Next to this we have parents explaining the impact of having a child with DMD/BMD who is experiencing learning difficulties and/or behavior problems.
The same protein that is missing in the muscle causing muscle breakdown, is also missing in the brain. This is causing problems such as learning difficulties or behavioural issues such as ADD, ADHD, OCD and autism. For many families in day to day life, this is causing more stress and worries than the physical problems. The World Duchenne Organization identified this need and is currently participating in the BIND project under European Union’s Horizon 2020 research and innovation program under grant agreement no 847826.
Speakers
Prof. Eugenio Mercuri, pediatric neurologist Policlinico Gemelli, Italy
François Lamy, DMD father, France
Dr. Nathalie Doorenweerd, researcher LUMC and University of Newcastle, UK
Martha Stein Carotta Henriques, DMD mother, Brazil
Dr. Jos Hendriksen, neuropsychologist Kempenhaeghe, NL
Kathi Kinnett, clinical care advisor PPMD, USA
Prof. Francesco Muntoni, pediatric neurologist GOSH London, UK
Elizabeth Vroom, chair World Duchenne Organization, NL
Once again, on the occasion of the World Duchenne Awareness Day, Pope Francis, through the president of the organisation Adm Argentina, has sent the following message: “On the World Duchenne Awareness Day, I send my warm regards joining in the hope of a better future for all. I pray for you and I also ask you to do it for me.”
On World Duchenne Awareness Day, we not only want to raise awareness among the general public about Duchenne (and Becker) Muscular Dystrophy, but also to raise awareness of a specific subject each year among the Duchenne community. For 2019, this special topic is ‘Nutrition in DMD’.
Not everyone may be aware of the need to pay special attention to nutrition and the intake of fluids. Also, the use of supplements in Duchenne needs attention, as not many people are aware of the risks of taking supplements, especially in combination with other medication. In this video, Dr Erik Henricson explains the importance of nutrition in DMD.
EDUCATIONAL MATERIALS
The World Duchenne Organization, together with experts on Duchenne and nutrition, created two pdf’s that contain information considering nutrition and supplements. Click on the icons below to reach the pdf’s. These documents will be updated when needed.
DUCHENNE NUTRITION FAQ’S
In this series of videos, Dr Zoe Davidson (advanced accredited practising dietician in Australia) answers the 17 most frequently asked questions about nutrition in Duchenne Muscular Dystrophy. Click here to access the full playlist.
ADDITIONAL DOCUMENTS
DMD Pathfinders launched a Nutrition Guide for adults with Duchenne. They were working with health professionals around the world to pull together existing best practices and experiences of adults with DMD into a useful resource. Next to this, the Duchenne Care Videos also contain an episode focusing on gastrointestinal and urinary health.
World Duchenne Awareness Day 2019 will be celebrated under the High Patronage of the European Parliament
It is estimated that today in the EU, 5-8000 distinct rare diseases affect 6-8% of the population – between 27 and 36 million people.
The EU’s strategic objective for rare diseases is to improve patient access to diagnosis, information and care. It assists in pooling scarce resources spread across the EU, enabling patients and professionals to share expertise and information. Specific measures include:
CreatingEuropean reference networks linking centers of expertise and professionals in different countries to share knowledge and identify alternative treatment options
As an international Duchenne Communitywe are very grateful to the European Parliament for this important recognition and the effort in fighting rare diseases.
With World Duchenne Awareness Day approaching, there are so many ways you can get involved in raising awareness on this rare muscle condition. No matter what effort you make, your contribution to raising awareness will help lift off Duchenne Muscular Dystrophy from this world. Here are some tips on how you can bring your light for World Duchenne Awareness Day.
Talk. Use this day to bring up topics or questions you have to open up conversation with family, friends or anyone about Duchenne. This can involve this year’s topic ‘Nutrition & Nutriceuticals in DMD’, but can cover anything that is on your mind.
Listen. Some Duchenne parents or families don’t want to hear solutions, they just want to be understood. Allow yourself to become a listener and focus on creating mutual understanding to set the path towards meaningful problem solving.
Learn. Attend a conference, event or fundraiser nearby and support your local Duchenne organisation. This not only brings you fresh knowledge and insights, but also creates a stronger bond with other Duchenne families.
Donate. Reach out to your patient organisation and ask how you can help. Donate your time, expertise or money and help create a better quality of life for those affected by Duchenne Muscular Dystrophy.
Show. Demonstrate your solidarity with the Duchenne community by taking a picture with a red balloon, and post it on social media with the hashtag #WDAD2019, mentioning @duchenneday.
With these steps in mind, we can build together on a future with better standards of care and quality of life by those affected by Duchenne Muscular Dystrophy. On September 7, let’s hear it for Duchenne and Becker boys, men, girls, carriers, and anyone who is affected by this muscle condition.
“If a tree falls in a forest and no one is around to hear it, does it make a sound?”. A large contributor of organising a successful awareness raising effort is great communication. The quality of any relationship (with families, patient organisations, clinicians, institutions and companies) comes down to the quality of good communication. Learning how to communicate effectively goes a long way in creating personal connection and thus, a greater impact of your fundraiser, event or campaign. Here are seven tips to effective awareness communication, regardless of the type of effort.
1. ORGANISE, ORGANISE, ORGANISE
Good project management can make your effort so much less tiring. Create an online document containing a list of participants, programme, list of timings, speakers, and sort out venue & logistics in advance. Assign responsibilities to people who you can build upon. ALWAYS have a backup plan for key pieces of your effort, for example an important speaker or if your event is outside.
2. Ask for testimonials
People don’t just want to hear you talk, they are also interested in hearing other people’s stories. Use the dictaphone function on your mobile or another digital voice recorder to gather experiences, thoughts and insights from participants. If you want to post them on social media, make sure you have consent to use it for those purposes. You can make a list of questions to ask that you can rotate during your interview rounds.
3. Get social
In the days before your event, start making noise in the social arena. Create an event on Facebook, set up a hashtag to collect all things related to your event in one place, and tag or mention influential figures: this may be persons, organisations or institutions. If you organise a conference, you can think of broadcasting or livestreaming the event on Facebook.
4. Engage the press
Journalists are a powerful source to engage and broaden your impact, especially towards the civil society that are not related to Duchenne Muscular Dystrophy. However, they are short on time. Disseminate a press release that contains all the information they need to create an article. A press release contains a strong title, key insights, background, a summary, contact details and high resolution pictures.
5. ensure follow-up
After your event ended, do not stop here. By creating momentum during your event, you can spark engagement with participants and stakeholders to keep going. Are there certain actions that derive from your event? Is a working group starting, or new collaboration efforts? Did new insights and stories emerge from your gathering? This can serve as a basis for new publications.
6. Build a strong team
Create message groups to align your team and ensure everyone is aware of their role. Ask around for volunteers that can take care of tasks like registration, taking pictures, engaging on social media and creating fun activities for children to attend. Don’t be afraid to delegate tasks. Remember the proverb: “If you want to go fast, go alone. If you want to go far, go together.”
7. MAKE IT VISUAL
In the hectic days in advance and during your event, documenting it visually and in text might not be on the top of your list. However, images and notes create the fundamentals of your communication. Hire a photographer, or ask someone to take high quality pictures in landscape on their mobile phones, and collect them in a central cloud storage place like Dropbox or Drive.
Organising an event can be a very stressful job with too many things going on at the same moment, but effective communication with your team and participants can ensure a smooth job. Once you see the gains of good communication and the benefits it brings for your community, your time spent on communication will be more effective and meaningful.
Share the BRING YOUR LIGHT FOR WORLD DUCHENNE AWARENESS DAY video on social media, television, hospital screens, and many other places, and use the press release to make journalists aware of information they didn’t know.
get involved in social media
Communication is essential to raise awareness on Duchenne! Share the promo video, put the red balloon as profile pictures on your social media, tell us in which way you “bring your light” for Duchenne.
Bring your light by donating
Support the activities of the World Duchenne Organization: we can really make the difference together! Use the red balloon, symbol of the World Duchenne Awareness Day.
promote education & set up a meeting
Share the educational materials available on our website, organize an educational meeting or attend a local initiative!
organise an event
Light up a monument to celebrate the World Duchenne Awareness Day, organize an event involving as many people as possible to turn the community bigger and stronger.
