WDAD receives high patronage of the European Parliament

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:

As an international Duchenne Communitywe are very grateful to the European Parliament for this important recognition and the effort in fighting rare diseases.

How you can bring your light to Duchenne families

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.

  1. 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. 
  2. 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. 
  3. 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. 
  4. 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.
  5. 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.

World Duchenne Awareness Day 2017 in Mexico

7 tips for effective event communication

“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.

How to light up a monument in your city

Everyone can bring their light for the World Duchenne Awareness Day, even a monument! In the past years, many important monuments all over the world have been illuminated for Duchenne. Sometimes, it was the red color only, and sometimes the organization included the logo and distinctive red balloon.

Do you also want to lighten up a monument or landmark for this year’s World Duchenne Awareness Day? This article provides you with guidelines on how to make this happen.

5 steps to follow:

  1. If you are interested in lighten up a monument in your city, check on the website of your city the procedures ( office that is in charge of this activity, documents needed, timing ).
  2. As soon as you have the details from your city, contact our team and you will receive all the documents and high resolution logos needed.
  3. Create a local communication plan to speak about this important action and our team will help you for the international communication.
  4. Launch your event, enjoy the light and take pictures for your memories and communication!
  5. Post your pictures on your website and social media platforms with the mention @duchenneday or #WDAD2019 to share your experience with the Duchenne community.
In 2017, the Colosseum in Rome, Italy became the center piece of World Duchenne Awareness Day in Italy due to enlightening the century-old monument with the logo.

5 steps you can take to raise awareness

share the video + press release

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.

Story by Maria & Hanna Fries

My name is Maria Fries-Lindgren. I was born in Sweden and I also went to schoolthere. 25 years ago I moved to Switzerland to work and I’m still here. I’m marriedwith Daniel and we have two lovely children. Mattias, 11 years old who hasDuchenne, and Hanna, 9 years old. I do not have a professional life, I stopped working when my son was born. I like very much being mom and housewife. I also like writing, reading, cooking, gardening and to jog. I do some voluntary service with the websitewww.duchenne-schweiz.ch.I answer mails from families recently diagnosed with duchenne and I try to help andsupport them. I was recently elected as a board member in the Swiss muscle society(Schweizerische Muskelgesellschaft).

My dream, my biggest dream, is that a cure for Duchenne soon will be found.During the weekends I like to do something with my family. Bicycling, walking,playing games…If I could change something in the world, I would end all wars.I would like to invite the pope, Wladimir Putin and my grandmother, who died when Iwas only one year old. My favourite experience is the birth of our two children.My funniest memory is when I meet my mother (once or twice a year) and we sittogether and talk. Suddenly we start laughing, just like that. A glance, and weexplode in a warm hearted laugh, without a reason. It happens every time we meet.I wake up at 6. Then I get up, make lunch for my husband and prepare breakfast forthe children. After they are gone to work and school, I go out to jog. After that I dosome washing and cleaning. Some days I have to do some office job, answering e-mails or preparing some papers. At 11 I cook lunch for the children. We eat at 12.They go to school again at 13.15. Mostly I work a little bit again. Kids are back at15.15. I help them with their homeworks. My son likes to bake, cakes and bread,and we often do that together. I prepare dinner and when my husband comes home around 18.30 we eat. The children go to bed around 20. Then my husband and I sit on the sofa with a cup oftea and talk a little bit. Some evenings he has to work a little bit on the PC, then Ijoin him on my PC. Or I read a book. I go to bed around 23.

Yesterday I met 10 great duchennemoms! I had organized and invited duchennemoms from the german speaking part of Switzerland to meet and exchangeexperiences, and to have a great day together, of course. Some of them I met forthe first time. I was overwhelming to learn about so much power and strength andlove! We took a boat trip to a small place where we got off the boat and had a nicelunch in a beautiful restaurant. We talked and talked. We laughed and we cried. Lateafternoon we went back with the boat, an old steamer, and enjoyed the sun, thewind and the beautiful sight of the mountains. It was a wonderful day!Tomorrow I will go for a jog first thing in the morning. Then I will iron a load ofclothes. I will have to pack a small suitcase also.Since two years now, my son takes part in a clinical trial in Paris and we travel every week with him to France. We take the train (TGV) from Basel. During travelling I will do some work on my laptop, answering e-mails and preparing some documents. IfI get tired I listen to music and close my eyes. When we arrive in Paris I walk withmy son in the wheelchair to the hotel, it’s a 15 minutes walk along the river Seine. After our arrival in the hotel we have a procedure, it’s always the same… We both sitin the bed, my son watches TV and we eat a sandwich. During a commercial break hetakes a short shower, during the next one he brushes his teeth. At 22 we switchof the TV and the light. Holding his sweet little hand we fall asleep. We would bothprefer to be at home in our own beds, but we know how important the clinical studyis and as he never complains about it, I neither do I so.My favourite person to have around me is… I don’t know.

I don’t have any favouritepersons to have around me, except my family. I like be being alone, so maybe theanswer is: nobody ?I’m Hanna Fries, I’m the sister of Mattias. Mattias has Duchenne. I’m 9 yearsold. I live in Switzerland. I would like to be a popstar.I like to draw, play with barbies and Legofriends.I also like to play outside. And of course I love to sing and to dance.Everything should be for free! And that everybody in the world has fresh andclean water. I would like to invite Taylor Swift, my grandfatherand my best friend Lorena.My favourite experience was to learn to dance.My best memory is from a camp together with other kids.My funniest memory is when my little cousin went with us to an amusementpark. There she went with a ghost train. I was waiting outside. When she came out she laughed so much that she cried and I laughed with her. I wake up at 6.30. After I have got dressed, I drawa little. Then I have breakfast.

I go to the toilet and brush my teeth.At 7.50 I go to school with my brother. School starts at 8.10. At 9.40 there is a break where I play outside with my friends. Schoolstops at 11.40. Then I go home and have lunch which my mother cooked. Some days I have school in the afternoon. Then I leave at 13.10 and come back twohours later. I have homework everyday to do. Sometimes I play with a friend, or go to a dancelesson. I have dinner at 18.30, then I brush my teeth. I go to bed at 20.30.Yesterday I went to my grandmother and had lunch with her. In the afternoonwe took a boat trip on the lake of Lucerne. My mother picked me up in the evening and we went home.Tomorrow I will have to go to school again. I haveno choice!My favourite person is my best friend Lorena.My day is a success when… nothing bad happened to me and nobody saidsomething stupid to me.

Story by Andrew Sedmihradsky

Starting on Father’s Day this year, my four year old son Max and I set off on a 600 km cargo bicycle ride from Ottawa to Hamilton along the Trans Canada Trail – a journey we named ‘Max’s Big Ride’. Max and I made this ride to advance awareness about Duchenne muscular dystrophy and also to raise money for research. So far the ride has raised close to $55,000.

Max’s Big Ride was a true family affair as Max’s grandparents and mother also hit the road with us in support roles. It was a tremendous adventure and we saw lots of wildlife along our scenic route and met even greater numbers of kind and incredible people. Max and our family were welcomed warmly by cheering crowds at various points along the way and we were all deeply touched and incredibly thankful for all the support we received.

I am happy to report we made it to the finish line, arriving in Hamilton’s Bayfront Park on Canada Day, July 1st, to the cheers of our friends and supporters. While Max’s diagnosis has been very hard for our family to deal with, we have decided to roll up our sleeves and fight this horrible disease as best we can. This year’s ride is just the beginning, and planning for our 2016 fundraiser will begin in a few weeks.

Story by Dimitrios Athanassiou

Hi my name is Dimitris I have two beautiful boys Hermes and Hector with my wife Omaira and we live in Athens, Greece. My older son Hermes has DMD.

What is your dream? My dream is my son’s generation to be the one that in their lifetime we eradicate Duchenne.

What do you like to do? When I find some free time, which isn’t very often, I like to take my family to the beach.

If you could change something in the world, what would you change? I would change the future of the rare diseases.

If you could invite any three people dead or alive to dinner who would that be? the ones that will find the cure for DMD

What was your favorite experience? From going down the Amazon on a boat to riding a bike at 300 kph, nothing was more exciting for me than being present at the births my two children.

What is your best memory? Their first smiles

What is your funniest memory? The expression on the face of my first son when he found out that he is not alone! My typical day starts s at 7am when I wake up and get Hermes ready for nursery before dropping him off. Then it’s straight into my email account where I will exchange messages, build contacts, talk to parent, discuss new information and trials, upcoming medical conferences and parent advocacy. I will take around 30-40 phone calls day from at home and overseas on a typical day for this purpose, then pick up my son around 3.30pm, more emails, more campaigning, stop for dinner, maybe take a final phone call or join a conference call around 10pm, then asleep at 2 or 3 am. If all the above happen I consider it a good day. The next day I do it all over again happily!

What will you do tomorrow? The same as what I will do today, but with a small change because we are driving three hours to jump on a boat and have a this weekend in Cyclades.

Who is your favorite person to have around you? My wife because she beautiful, kind, patient ( with me ) and very smart (says Omi ? )who is checking what I am writing !!!!)

My day is a success when….my family is smiling and we are one step closer to cure DMD

Story by Melissa Brunet

Summer is 6 years old and we live in Australia.We found out Summer is a carrier for Duchenne Muscular Dystrophy when she was 5yrs old. She was very late to sit crawl and walk. She finds it difficult to run and complains a lot of tired legs. I knew there was something different about Summer her whole life, she has had elevated CK levels from 2 yrs old and was finally diagnosed as a carrier of DMD after a full chromosomal microarray was done. I as her mother was tested also am not a carrier.Melissa Brunet

Duchenne Family Guide

Thanks to the collaboration of four not-for-profit organizations – the Muscular Dystrophy AssociationParent Project Muscular DystrophyTreat-NMD and the World Duchenne Organization – a thoroughly updated and re-drafted Duchenne Guide for Families is developed. This guide gives parents, families and caregivers access to the information necessary and enables them to work with their health care and support provides in ensuring optimal care.

Click here to access the Family Guide in USA English and UK English. Translations are available via the TREAT-NMD website.

In line with the three articles about care considerations for DMD recently published in Lancet Neurology1-3, a new Duchenne Family Guide has been developed and were published on World Duchenne Awareness Day, 2018.

The development of the updated care considerations was funded by the U.S. Center for Disease Control. These updates offer the latest clinical considerations to improve care, services, and quality of life for people living with Duchenne, raise the standards of care for Duchenne and will assist clinicians in making the best possible recommendations for these patients.

References:

  1. Lancet Neurol. 2018 Mar;17(3):251-267. doi: 10.1016/S1474-4422(18)30024-3
  2. Lancet Neurol. 2018 Apr;17(4):347-361. doi: 10.1016/S1474-4422(18)30025-5
  3. Lancet Neurol. 2018 May;17(5):445-455. doi: 10.1016/S1474-4422(18)30026-7