World Duchenne Awareness Day: September 7th, 2017
Duchenne Awareness Day is on September 7th, 2017 this year. It is to bring awareness to Duchenne Muscular Dystrophy. Source: World Duchenne Day. http://www.worldduchenneday.org/
Next month, it is World Duchenne Awareness Day and anyone can join the Duchenne community in celebrating it. Duchenne Muscular Dystrophy (DMD) affects 250,000 people in the world, and the disease affects one in every 3,500 boys. People all across the world will raise money and awareness through Duchenne Balloon. The goal of this year is to support a worldwide e-learning platform on DMD. Duchenne dreams can only be achieved when there is education.
Theme for this Year
The theme is “Dreams, ” and the day will focus on the goals, dreams, and lives of those living with Duchenne.
How to Participate
Participation can be by sharing a daughter or son’s story by recording a personal video. The video should include their/your dreams and hopes for the future. Everyone has their stories and can motivate one another. Sharing our stories can go a long way in motivating other people when they face challenges.
1. Record a video
The video can be in an interview format, but can be recorded in any way you want. Some of the points to cover in the video are;
- Name, age and place of residence
- Occupation
- Details about daily life including how the day look like
- The dream, why and how that is the dream
- Is the dream shared with someone else? Is it the first time to share the dreams? Who did you share the dream with and why?
- What do you do daily to realize the dream?
- What to do when the dreams are realized and the feeling felt
Things to remember when filming:
- Ensure the lighting is good. The light needs to be behind the person who is videoing. This is to make sure that the light is cast on the person filmed. Usually, natural light is always right, so record videos outside whenever possible.
- Check the microphone and make sure they work well.
- Record where there is silence in the background
- Apply landscape mode when recording
- Use a mobile phone instead of an iPad/tablet
- Leave about 3 seconds without voice before and after the interview
- Ensure the interviewee looks straight at the interviewer
2. Be social
Visit the World Duchenne Awareness Day Facebook page and like the page. Friends and family can also do the same. Get as many people as possible to like the page by changing the profile picture on Twitter, Facebook, Whatsapp and LinkedIn. Also, share the video and manifesto.
3. Buy a balloon
People around the world sell balloon during the World Duchenne Awareness Day as a way of honoring the day. Join the world in celebrating it by having a balloon page in honor of the loved one living with Duchene. Selling of balloon was the first international action for raising funds to support education. Donating and promoting balloons is simple and people around the world are using balloon to create awareness.
4. Photo blog
The best way of raising awareness is by sharing a story. It can be done by sharing a photo blog and the WDAD site add different stories every day.
5. Fundraising
Another way of creating awareness is by organizing fundraising events. Hosting an event is easy and fun. The steps are simple:
- Select an event – use creativity
- Pick a date and time
- Invite a guest
- Advertise
- Celebrate
Funds can help a long way in helping the parents of a child suffering from Duchenne. Funds can be used for medical bills or education. Organizing fundraising events can raise enough money to support the community. Hosting fundraising events bring people together and awareness is raised.
6. Promote education
Promoting education can be achieved by organizing webinars, hosting workshops and giving sharing information about Duchenne. When people have facts about Duchenne, helping these boys realize their dreams becomes easy.
7. Encourage scientists and clinicians to join
Encouraging scientists and clinicians can be achieved by recruiting them so that they may participate in WDAD activities.
8. Media
Share a press release with TV, radio and Newspapers. The media will them, inform the community. This can be the fastest way to create awareness, therefore, reach out to share the word. Most people watch TV, read Newspapers and listen to radio and using the media to create the awareness can reach many people.
9. Advocacy
Involve governors, health insurance agencies, legislators, and policy makers, local board members, to spread your voice, rights and mission.
10. Educating people
Some people don’t know enough about Duchene and for efficient awareness, people need to be educated.
What to educate people on Awareness Day
As the world celebrate the WDAD, there are several things that people should know as they create awareness. Some of the tips to educate other people on the awareness day for the realization of dreams are;
- Children with Duchenne, usually have circulation problems due to heart weakness and thus affect their ability to generate body heat. For this case, get your son a Towel Warmer.
- A child can still participate in many activities despite being in a wheel chair. Some may include baking, drawing, writing, singing, arts and crafts. This activities encourage creativity.
- Anyone offering support and advice should do so for free. Most of the families suffer from financial problems because of medical bills.
- When a child ask a difficult question on the disease, the first step to answering the question is to calm down and remove any negative emotions. Differentiate between opinions and facts. Use the right words for his age to avoid complicating things.
- If a child is scared of the future such as a planned spinal fusion surgery, tell him that fear is insignificant compared to his well-being.
- The fact that a child was diagnosed with the disease can be difficult to accept. However, disbelief should not compromise the care the child gets. It may break someone’s heart but a child needs to be taken seriously.
- Having trouble dealing with a child’s diagnosis can hurt him when he learn of this. Anyone caring for the child should learn to cope with the situation.
- While a child is still able and young, take him to different places. Travelling in the future will be difficult or impossible. Good memories are important when diagnosed with this disease.
- If other children don’t want to play with the child, ask the teachers to let him bring something cool. Some children want inspiration to get their attention.
- Don’t mollycoddle the child. Consider the bigger picture to get to know what is best for him. If a child doesn’t develop emotional independence, it will be a hard time for the boy in the future. It is necessary to leave him live both the tears and the smiles.
Educating people on Duchenne muscular dystrophy will help in achieving the dreams of the boys living with Duchenne.
Conclusion
As WDAD is approaching, the Duchenne Community needs everyone’s support in educating people and raising funds to help those living with Duchenne. Creating awareness and reaching many people will help raise enough funds for the community. As the world celebrates the World Duchenne Awareness Day, be among those who will inspire over 250,000 people living with Duchenne. Creating awareness will inspire them and achieving their goals and dreams becomes easy.
Sources
http://www.worldduchenneday.org/
