World Duchenne Awareness Day 2022 Online Event Women and Duchenne

Official WDAD2022 event: Women and Duchenne

Join the educational event on Women and Duchenne that will launch on September 7, 15:00 CEST. This event is for anyone interested in how we can create a better future for people living with Duchenne and Becker MD.

This year’s World Duchenne Awareness Day, we are highlighting the various aspects of Women and Duchenne. The educational event is taking place in Rome, Italy, and is accessible via YouTube.

Women and Duchenne

In Duchenne and Becker Muscular Dystrophy the spotlight is –almost always– on the boys and the men living with the rare muscle-wasting disease. No wonder, as it is an X-linked disease. The genetic mutation is located on the X-chromosome of which boys and men only have one. Women have, in general, two chromosomes, thus have a ‘spare’ gene which still encodes for dystrophin. 

In addition to women with DMD, this theme Women and Duchenne includes all women. The women supporting the boys and men with Duchenne, the caregivers, the spouses, the sisters, the clinicians, the scientists and the patient advocates. 

Main objective

The main goal of World Duchenne Awareness Day 2022 is to raise awareness about Women & Duchenne. First, we will give the podium to women, to address their needs and challenges. Secondly, we are providing information about optimal clinical, psychological and social support for carriers. Third, we will put the spotlight on the female caregivers. Lastly, we are highlighting the engagement of strong female scientists, clinicians and advocacy leaders.

Event Women and Duchenne

Carriers: Women who are carriers of the mutation can have clinical symptoms. This can vary from no symptoms at all to being as severely affected as boys and men with Duchenne MD.

It is important for Duchenne mothers, sisters, and aunts to be tested if they are carriers. Being a carrier can influence their daily life and mental wellbeing. Every Duchenne carrier, showing symptoms or not, need regular medical checks and should receive support.

Mothers: Not all mothers are carriers but all mothers need support and their challenges should be addressed. How to combine being a Duchenne MD mother with raising siblings, having a job, be a patient advocate, fundraiser or a mentor for others? We will discuss caregiver burden, mother love, how to look after other family members, how to look after yourself.

To illustrate what it means to be a Duchenne mother, Nicoletta Madia is interviewing mothers across the globe to collect their experiences. In addition to mothers, we invited a Duchenne sister and wife to share their stories, needs and challenges.

Lastly, we will discuss strong women in advocacy and science. Why did they choose Duchenne Muscular Dystrophy as field of expertise? Why are they so extremely dedicated? We hear from top professors and advocacy leaders in the field of Duchenne and Becker Muscular Dystrophy.

Why you should join

With extensive experience across care, science, policy, inclusion and research, this educational event is offering a unique perspective on Women & Duchenne, and how we can overcome challenges.

To conclude, this event is for anyone interested in how we can create a better future for people living with Duchenne and Becker Muscular Dystrophy. The online event is an initiative by the World Duchenne Organization.

Women and Duchenne

Women in Duchenne

Why for World Duchenne Awareness Day 2022, women are in the spotlight.

In Duchenne and Becker Muscular Dystrophy the spotlight is –almost always– on boys and the men living with the rare muscle-wasting disease. No wonder, as it is an X-linked disease. This means that the genetic mutation is located on the X-chromosome of which boys and men only have one. Women have, in general, two X chromosomes. This means women have a ‘spare’ gene that is still encoding for dystrophin.

The role of dystrophin

The muscle breakdown is being caused by missing the genetic information to produce dystrophin. This is well-known in the field of Duchenne. A loss of dystrophin is leading to loss of motor functions, difficulties in breathing and coughing, and weakening of the heart muscles. At a later stage, the smooth muscle function may be affected. Additionally, dystrophin is also playing a role in the brain. Although there is still a lot to learn about the exact role of dystrophin in the brain, we see a higher percentage Duchenne boys and men with learning and behavioral issues.

Why women in Duchenne?

There are several reasons that this year’s World Duchenne Awareness Day has women in the spotlight.

  1. Mothers are often the primary caregivers.
  2. Women can be carriers with or without symptoms. Carriers of the Duchenne mutation can have symptoms in line with those seen in males living with Duchenne.
  3. Women with Duchenne exist. When a woman’s ‘other’ X-chromosome is not existing or not ‘turned on’, she can have exactly the same symptoms and course of the disease. These women have the diagnosis Duchenne MD and should be included when talking about Duchenne.
  4. All over the world there are extraordinary women playing an important role in the Duchenne field, in advocacy, research and care. Their work and impact will be highlighted during WDAD 2022
  5. With a longer life expectancy in Duchenne, a new group is emerging: those of the partners and spouse.

Mothers as primary caregiver

First and foremost: for all mothers, carrier or not, it is important to pay more attention to wellbeing and self-care. Not only by themselves. This should be encouraged by clinicians looking after their sons, friends and family members. A famous quote is: ‘You first have to look well after yourself before you can look after others.’ Many Duchenne mothers miss their regular health checks. In addition to this, research showed they are significantly less fit than other women their age. Having a healthy lifestyle including time for yourself is important for your mental health.

Duchenne Carriers

Secondly, carriers, whether they are mothers, sisters, aunts or any other carrier, need regular checks and support. For example for heart function, muscle weakness, and psychosocial issues. Learning difficulties may need to be checked. The intensity of these visits and support depends on how severe the symptoms are.

Women living with Duchenne

There are girls and women lacking dystrophin, having the same clinical features as boys and men. However, girls and women are often diagnosed with more difficulties and delays, because Duchenne and Becker MD are considered a male only disease. Often, women need to explain that they too, can be affected with Duchenne MD. We as Duchenne Community should raise more awareness for this.

Women in Duchenne science and care

The Duchenne Community is blessed with involvement of exceptional women working in the field of research and care for everyone affected with a dystrophinopathy. They are ambassadors and mentors at the same time. They are spearheading the translation of research and care recommendations for families.

DMD Partners and spouse

Over the past decades, life expectancy of people living with Duchenne and Becker Muscular Dystrophy has increased significantly. Young boys are growing up and become young men, and adults. Partners and spouses play an increasing role in their lives. In other words, partners and spouse are becoming a new group in the Duchenne community. We should include their unique perspective.

Goals of World Duchenne Awareness Day 2022

  • Support mothers as primary caregivers
  • Acknowledge carriers and their clinical needs
  • Recognize women living with Duchenne
  • Celebrate strong female leaders in DMD research and advocacy
  • Include the perspective of partners and spouse

This World Duchenne Awareness Day, we are honoring and learning from the extraordinary women in the Duchenne and Becker MD field. This is going beyond the carriers and women with Duchenne MD. The patient advocates fighting for new developments, the women organizing support groups and the researchers and clinicians who continue to make a big difference in the lives of everyone affected by Duchenne and Becker MD.

Educational event on September 7

Moreover, on September 7, the World Duchenne Organization will host an educational event on women and Duchenne. During this virtual event, experts share their knowledge, stories and experiences surrounding women and girls in the field of DMD/BMD. The event is open for everyone and registration is not needed.

Download materials

There are official materials that can be used to raise awareness for World Duchenne Awareness Day. Visit the Download Materials page to access the visuals and texts. All materials are available in multiple languages. In addition to finding the press kit, people can find Did-You-Knows, social media banners, and high resolution logo’s.

 

For questions and inquiries, please contact Suzie-Ann Bakker:

[email protected]

Women in Duchenne
World Duchenne Awareness Day theme 2022: Women in Duchenne

 

 

Photo by Omar Lopez on Unsplash

2022: Women & Duchenne

WORLD DUCHENNE AWARENESS DAY 2022

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 ‘Women & Duchenne‘.

Awareness raising materials, such as the official press pack, high resolution logos, key visuals and images can be found here.

An educational event accessible to everybody will take place on September 7. The event launches at 15:00 CEST. Click the link below and select the bell icon to be notified when the event begins.

WOMEN & DUCHENNE

By creating specific educational materials World Duchenne Organization will highlight all the aspects connected with Duchenne and the female world:

  • Carriers: genetic and clinical aspects
  • Care considerations for female carriers
  • Mothers as primary caregiver
  • Girls living with Duchenne
  • Spouses and girlfriends
  • Female family member network of support
  • Women in science
  • Female international advocacy leaders

WORLD DUCHENNE ORGANIZATION

On September 7, the World Duchenne Organization will be hosting an online event. During this event, experts share their stories and experiences surrounding women and girls in the field of DMD/BMD. 

PRESS RELEASE

Click the picture below to see the official World Duchenne Awareness Day 2022 press release. 

For inquiries, please contact Suzie-Ann Bakker

Adult Life & Duchenne online event

On 7 September 2021, the World Duchenne Organization hosted an online event on Adult Life & Duchenne. The event gathered people from over 50 countries to listen to stories and experiences surrounding DMD and adult life. The World Duchenne Awareness Day 2021 event ‘Adult Life & Duchenne’ is available with Spanish, Russian and Ukrainian interpretation.

The aim of the online event was to inspire young adults with Duchenne and their families to think and plan for the future, and to call for global action to everyone involved to facilitate adults with Duchenne to live a full life.

Speakers include Prof. Ros Quinlivan, Dr. Jos Hendriksen, Nicoletta Madia, Elizabeth Vroom and Hlawulani Mkhabela. Apart from these, Duchenne adults from different parts of the world will share their experience of living with Duchenne.

Guideline for Duchenne Adult Care

In addition to the online event, a new Consensus Guideline for Duchenne Adult Care was published. This document concludes the insights of a series of workshops with specialists from a wide range of clinical areas. The Consensus Guideline for Duchenne Adult Care aims to provide a framework to improve clinical services and multi-disciplinary care for adults living with Duchenne Muscular Dystrophy.

World Duchenne Awareness Day highlights a year-round effort to improve adult life in Duchenne

On 7 September 2021, many activities around the world were organized on the occasion of World Duchenne Awareness Day. Awareness-raising events were hosted in many countries by organizations, companies, healthcare professionals and families. This article summarizes World Duchenne Awareness Day 2021 events involving thousands of people across the world, under the theme ‘Adult Life & Duchenne’.

The 8th World Duchenne Awareness Day was a reminder of the importance of creating opportunities to improve the lives of adults living with Duchenne muscular dystrophy (DMD).

The World Duchenne Organization would like to thank everyone who created and participated in activities that were organized throughout the world. Elizabeth Vroom, chair: “During this extraordinary day, we were happy to see this big movement about the globe and the willingness to take action to achieve the goal of this day. Adults with Duchenne should be able to receive adequate care, have opportunities to live an independent life and to participate in society.”

Online Event on Adult Life & Duchenne

The World Duchenne Organization hosted an online event on Adult Life & Duchenne. The event gathered people from 59 countries to listen to stories and experiences surrounding DMD and adult life. The aim was not only to inspire and empower young adults with Duchenne and their families to think and plan for the future, but also call for global action to everyone involved to facilitate adults with Duchenne to live a full life including, social participation, jobs, independence and provision of optimal health care.

Apart from experts sharing their take on adult life, multiple interviews highlighted the perspective of adults living with Duchenne. In addition to care, other important aspects that were discussed included mental wellbeing, future perspective, and disability rights.

Consensus Guidelines for Adult Duchenne Care

With increased life expectancy for people living with Duchenne MD, new medical needs need to be addressed in international standards of care. The Journal of Neuromuscular Diseases published on WDAD the Consensus Guidelines for Adult Duchenne Care. Catherine Woodhead, Chief Executive of Muscular Dystrophy UK said: “I am extremely pleased that Muscular Dystrophy UK has been able to fund and support the development of the first published best practice standards of care for adults living with Duchenne muscular dystrophy. We hope that the pioneering work of Professor Ros Quinlivan and the Adult NorthStar Network will help to improve the consistency of high quality care for adults with Duchenne in the UK, but also across the world as these recommendations are adopted in other countries.”

Illuminated landmarks

As the evening set in on September 7, famous buildings, landmarks and monuments were lighting up in red to raise awareness for the rare muscle wasting disease. The Niagara Falls (Canada), Torre Glòries (Spain), and Legislatura (Chile), are only few of the many red landmarks. Next to a wave of red light, some of the initiatives included the projection of the logo, such as on the Stedelijk Museum (Netherlands).

Next Steps

The World Duchenne Organization is planning a series of webinars regarding adult life in Duchenne. Each webinar will focus on a specific care aspect. The Duchenne Care Conference that is taking place in April 2022 will be dedicated as well on Adult Life & Duchenne.

World Duchenne Awareness Day

World Duchenne Awareness Day has been celebrated annually by the Duchenne and Becker community since 2014. It aims to raise awareness and inspire action to improve life quantity and quality of people living with Duchenne and Becker muscular dystrophy. Through World Duchenne Awareness Day, the World Duchenne Organization works to highlight important aspects that deserve more attention.

Consensus Guideline for Adult Duchenne Care

Today on World Duchenne Awareness Day, the Journal of Neuromuscular Diseases published the consensus guideline for adult Duchenne care. The publication can be accessed by clicking on the link below. We are grateful for professor Ros Quinlivan for taking the lead on this, and would like to thank the Adult North Star Network (ANSN) and Muscular Dystrophy UK for their contributions.  

Adult North Star Network (ANSN): Consensus Guideline For The Standard Of Care Of Adults With Duchenne Muscular Dystrophy. 

Abstract

There are growing numbers of adults with Duchenne Muscular Dystrophy living well into their fourth decade. These patients have complex medical needs that to date have not been addressed in the International standards of care. We sought to create a consensus based standard of care through a series of multi-disciplinary workshops with specialists from a wide range of clinical areas: Neurology, Cardiology, Respiratory Medicine, Gastroenterology, Endocrinology, Palliative Care Medicine, Rehabilitation, Renal, Anaesthetics and Clinical Psychology.

Detailed reports of evidence reviewed and the consensus building process were produced following each workshop and condensed into this final document which was approved by all members of the Adult North Star Network including service users. The aim of this document is to provide a framework to improve clinical services and multi-disciplinary care for adults living with Duchenne Muscular Dystrophy.

A message from Pope Francis for World Duchenne Awareness Day

The World Duchenne Awareness Day is grateful to receive a message from Pope Francis. This year, he is once again giving his blessing for World Duchenne Awareness Day. Below, you can find the official message from Pope Francis. We are giving thanks to WDO Board member and president of ADM Argentina Santiago Ordóñez for this opportunity.

Translation:

I send warm greetings on this new World Duchenne Awareness Day. Adding myself to the hope of a better future for all people affected with this disease.

I pray for all of you and, please, I ask you to do it for me as well.

Fraternally,
Francis

#SPREADTHEWORD for World Duchenne Awareness Day

Today, the official World Duchenne Awareness Day 2021 promo video is launched. This video marks the start of the global awareness raising day on September 7. With the help of many patient organizations throughout the world, the promo video is available in 16 languages. The video shows various portraits of people living with Duchenne in daily life.

Produced by the World Duchenne Organization

The official promo video is initiated and produced by the World Duchenne Organization, and coordinated by Nicoletta Madia. “Words are important. Words can help make a difference. This is the theme that emerges from the video for World Duchenne Awareness Day 2021. The video shows various portraits of people living with Duchenne in daily life. Three words are highlighted that mean a lot to people living with Duchenne MD.”

Duchenne encompasses what it means to live with this pathology and the commitment of research and clinic in this field.

Community includes thousands of people globally committed to changing the quality of life of people living with this disease.

Awareness encompasses the importance of informing about this rare condition globally by reaching the greatest number of people. An objective that is at the center of this day and for which the World Duchenne Organization asks everyone to spread the word.

Raising awareness

The official hashtag for the awareness raising campaign is #spreadtheword. Everyone is encouraged to share this video with their friends and family to raise awareness for Duchenne and Becker muscular dystrophy.

How to share

Nicoletta: “In the previous years, the promo video was displayed on enormous billboards, many social media channels, and screens in hospitals and clinics. Our aim is to achieve this type of global coverage again, so we can truly make an impact. With the connected community we have right now, I’m positive that this will happen.”

For press inquiries, please contact [email protected]

Online event on Adult Life & Duchenne

The World Duchenne Organization is organizing an online educational event on Adult Life & Duchenne. The free event on September 7 will be accessible for everybody via Zoom, and is available with live Spanish interpretation.

On September 7, the World Duchenne Organization is organizing a live event from 14:00 to 16:00 Central European Summer Time. During these 2 hours, various experts will share their experience and knowledge on adult life with Duchenne. Speakers include Prof. Ros Quinlivan, Dr. Jos Hendriksen, Nicoletta Madia, Elizabeth Vroom and Hlawulani Mkhabela. Apart from these, Duchenne adults from different parts of the world will share their experience of living with Duchenne.

Register here for the ‘Adult Life & Duchenne’ Conference

Adult men living with Duchenne

The number of adult men living with Duchenne Muscular Dystrophy (DMD) is growing bigger every year. This can largely be attributed to better medical care, such as supportive ventilation and the use of preventive (cardiac) medication. These men want and deserve to live their lives to the fullest. This means they have the right to receive adequate care, have opportunities to live independently and to participate in society.

However, the medical profession and society are often not ready to facilitate this. While knowledge of optimal care for pediatric patients has expanded considerably and the organization of care has improved for this group, there are no care guidelines so far for the adult men.

Optimal care

Only very few studies are being done to gain evidence on optimal care. Care is often fragmented and there is a lack of specialized medical teams/centers for adult DMD care. In addition, educational institutions and employers are often not equipped with the necessary facilities and support systems, and too many facilities are just not accessible, leading to extreme frustration.

Although the first papers describing the challenges as seen by this group were published more than 15 years ago, and since then documentaries have been produced and workshops held on these topics, a lot of work still needs to be done to improve the situation for adults with DMD around the globe.

“On September 7 during World Duchenne Awareness Day 2021, we ask you to act and start or accelerate activities to provide appropriate support and improve accessibility. By doing so, adults with DMD can indeed live their lives to the fullest, receive adequate care, and be given the opportunity to live independently and to participate in society.” – says Elizabeth Vroom, chair of the World Duchenne Organization.

Simultaneous interpretation

The event will be held in English with an option for simultaneous interpretation into Spanish and Ukrainian. The online event will be accessible to everyone who registered. The event will be recorded and the video subsequently made available.

Apart from being of interest to caregivers and people living with Duchenne MD, the event will be of particular interest to clinicians and other healthcare professionals, employers interested to hire people living with a disability, and government institutions.

Illuminate a landmark

Illuminate a landmark for World Duchenne Awareness Day. Show your solidarity and join patient organizations in creating a wave of red light around the world. As the evening sets in on September 7, famous monuments and landmarks will be shining bright to show solidarity for the Duchenne and Becker community. Join the global movement and light up a famous landmark or monument for World Duchenne Awareness Day!

The color red

Usually, the color red is used to create the association with World Duchenne Awareness Day. In other cases, the organization was showing the logo and the signature red balloon. Next to many city halls, important landmarks were participating. 

Illuminate a monument or landmark

Which monument or landmark do you want to illuminate for this year’s World Duchenne Awareness Day? Here we are sharing success stories and guidance on how you can make this happen.

5 steps:

  1. Check the city website for 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 share 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 mentioning @duchenneday or #WDAD2022 to share your experience with the Duchenne community.

Inspiration

  1. 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. Duchenne Parent Project Italy did a wonderful job!
  2. The Sagrada Família Nativity façade was illuminated in red for World Duchenne Awareness Day, with great work of Duchenne Spain.
  3. The Canadian part of the Niagara Falls was covered in a red robe to support World Duchenne Awareness Day, thanks to Defeat Duchenne Canada.
  4. In Chile, the municipality building in Santiago was illuminated in red as both DSG Duchenne and Duchenne Chile joined hands to reach out to the city mayor.