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HELP AND SUPPORT
From the first phone call, I felt completely understood and supported. Speaking to other DMD parents who work for Action Duchenne has truly been a lifeline for me, and they have never wavered in their support and patience. Duchenne Mum Thank you for coming to us for help and support. Action Duchenne is DUPLICATION MUTATIONS Duplication mutations. Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. These mutations prevent cells from producing the dystrophin protein which is needed for muscle function. ADULTS LIVING WITH DUCHENNE MUSCULAR DYSTROPHY Daniel Messenger (adult living with Duchenne) When Action Duchenne was founded in 2001, the average life expectancy for a young person living in the UK with Duchenne was late teens. It is now late 20s with more people than ever living into their 30s and 40s. YouTube. REVISED STANDARDS OF CARE FOR DUCHENNE MUSCULAR DYSTROPHY Revised Standards of Care for Duchenne muscular dystrophy. January 26, 2018 by Action Duchenne. We are delighted to announce that the revised Standards of Care for Duchenne were published in The Lancet Neurology this week; a high-impact peer-reviewed journal. The care guidelines were drafted by international experts from a wide range ofSTANDARDS OF CARE
This document was written by leading clinicians from around the world and sets out the care that people living with the condition should receive. The standards of care is a technical document, so Treat-NMD has released a families guide that is available for download . This gives an overview of different areas of care including bone health DR SHUKO JOSEPH AWARDED THE LORBER PRIZE Dr Shuko Joseph awarded the Lorber Prize. July 15, 2020 by Samantha. We are delighted to share the news that; Dr Shuko Joseph has won the Lorber Prize for best paediatric research paper for her work on growth and fracture using the UK NorthStar database that was published last year. The Lorber Prize is a prize awarded by the UK Royal College of LEARNING AND BEHAVIOUR IN DUCHENNE There are established behaviour and learning risks in Duchenne. Published studies have shown difficulties in the following areas: speech delay and/or language comprehension learning to read – especially phonics problems with counting and arithmetic short term and working memory (holding something in your head while you do something else) – this is very important when TALKING WITH YOUR CHILDREN ABOUT DUCHENNE Talking with your children about Duchenne. Thank you to everyone who joined us online for our FREE webinar with Dr David Schonfeld – talking with your children about Duchenne muscular dystrophy (diagnosis, treatment, hopes and dreams). It was a powerful and highly informative session, with plenty of great questions from the audience. PHYSIOTHERAPY WEBINAR 4 WITH MARION MAIN (SPLINTS Physiotherapy webinar 4 with Marion Main (splints & orthotics) May 28, 2020 by Lynnette. Thank you to everyone who joined us online for our FREE webinar with Senior Physiotherapist at GOSH, the fantastic Marion Main. It was fascinating and full of important information about orthotics, splints and care. Marion is joining us each fortnight HOME - ACTION DUCHENNEABOUT USWHAT IS DUCHENNENEWS & EVENTSGET INVOLVEDBECOME A MEMBERDONATE NOW Formed in 2001 Action Duchenne was the first national charity dedicated to supporting those living with Duchenne muscular dystrophy (‘DMD’). Our work to date has seen over £10m invested in ground-breaking research, educational programmes and campaigns.HELP AND SUPPORT
From the first phone call, I felt completely understood and supported. Speaking to other DMD parents who work for Action Duchenne has truly been a lifeline for me, and they have never wavered in their support and patience. Duchenne Mum Thank you for coming to us for help and support. Action Duchenne is DUPLICATION MUTATIONS Duplication mutations. Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. These mutations prevent cells from producing the dystrophin protein which is needed for muscle function. ADULTS LIVING WITH DUCHENNE MUSCULAR DYSTROPHY Daniel Messenger (adult living with Duchenne) When Action Duchenne was founded in 2001, the average life expectancy for a young person living in the UK with Duchenne was late teens. It is now late 20s with more people than ever living into their 30s and 40s. YouTube. REVISED STANDARDS OF CARE FOR DUCHENNE MUSCULAR DYSTROPHY Revised Standards of Care for Duchenne muscular dystrophy. January 26, 2018 by Action Duchenne. We are delighted to announce that the revised Standards of Care for Duchenne were published in The Lancet Neurology this week; a high-impact peer-reviewed journal. The care guidelines were drafted by international experts from a wide range ofSTANDARDS OF CARE
This document was written by leading clinicians from around the world and sets out the care that people living with the condition should receive. The standards of care is a technical document, so Treat-NMD has released a families guide that is available for download . This gives an overview of different areas of care including bone health DR SHUKO JOSEPH AWARDED THE LORBER PRIZE Dr Shuko Joseph awarded the Lorber Prize. July 15, 2020 by Samantha. We are delighted to share the news that; Dr Shuko Joseph has won the Lorber Prize for best paediatric research paper for her work on growth and fracture using the UK NorthStar database that was published last year. The Lorber Prize is a prize awarded by the UK Royal College of LEARNING AND BEHAVIOUR IN DUCHENNE There are established behaviour and learning risks in Duchenne. Published studies have shown difficulties in the following areas: speech delay and/or language comprehension learning to read – especially phonics problems with counting and arithmetic short term and working memory (holding something in your head while you do something else) – this is very important when TALKING WITH YOUR CHILDREN ABOUT DUCHENNE Talking with your children about Duchenne. Thank you to everyone who joined us online for our FREE webinar with Dr David Schonfeld – talking with your children about Duchenne muscular dystrophy (diagnosis, treatment, hopes and dreams). It was a powerful and highly informative session, with plenty of great questions from the audience. PHYSIOTHERAPY WEBINAR 4 WITH MARION MAIN (SPLINTS Physiotherapy webinar 4 with Marion Main (splints & orthotics) May 28, 2020 by Lynnette. Thank you to everyone who joined us online for our FREE webinar with Senior Physiotherapist at GOSH, the fantastic Marion Main. It was fascinating and full of important information about orthotics, splints and care. Marion is joining us each fortnight ACTION DUCHENNE RECEIVES PEER-TO-PEER SUPPORT GRANT The hundreds of children, young people and adults living with Duchenne muscular dystrophy (DMD) in the United Kingdom and their families face many challenges which have been exacerbated by COVID-19 and lock-down.. At a time when many people in the general population are re-emerging from the past 18 months of lock-down, the lasting effects of isolation are manifesting in the Duchenne WHAT IS DUCHENNE MUSCULAR DYSTROPHY? At first it seemed like a mountain to climb to understand Samson’s condition fully, but we soon became experts in Duchenne. Lynnette Ellison, Parent If you are a newly diagnosed family, please head to our support page. Duchenne muscular dystrophy is a rare genetic condition caused by mutations in the dystrophin gene, which preventproduction of
EXHIBITOR PACKAGES 2021 Showcase your product and services, meet Duchenne families and become a part of the UK's preeminent Duchenne event in 2021 on 13-14November.
OUR TEAM - ACTION DUCHENNE Grace Hackett, Alderwood Recruitment. From our Board of Trustees to our Staff, Action Duchenne is led by a diverse group of people with the majority having a direct connection to somebody living with Duchenne muscular dystrophy. We are passionate about giving people living with Duchenne longer and more enriched lives. Board ofTrustees.
THE 2020 ACTION DUCHENNE INTERNATIONAL CONFERENCE Event Location: We are delighted to announce that our Action Duchenne International Conference 2020 (‘the Conference’) is now open for registration. The event will inspire and educate hundreds of people from around the globe with updates on research, care and living with Duchenne muscular dystrophy. We invite all our young people and adults NEWLY DIAGNOSED EVENT We were delighted to welcome so many families from across the globe to our virtual event for newly diagnosed families or those who are newcomers to the Action Duchenne International Conference. We have received amazing feedback and we areNONSENSE MUTATIONS
Nonsense mutations. Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. These mutations prevent cells from producing the dystrophin protein which is needed for muscle function.POINT MUTATIONS
A point mutation is a very small alteration in the DNA code, where a single letter is either changed, duplicated or deleted. Point mutations cause 15-30% of cases of Duchenne. Genes are the instructions that allow a cell to make a protein and the dystrophin gene is the biggest in human cells – the DNA code is more than 10,000 letters long.STANDARDS OF CARE
This document was written by leading clinicians from around the world and sets out the care that people living with the condition should receive. The standards of care is a technical document, so Treat-NMD has released a families guide that is available for download . This gives an overview of different areas of care including bone health LEARNING AND BEHAVIOUR IN DUCHENNE There are established behaviour and learning risks in Duchenne. Published studies have shown difficulties in the following areas: speech delay and/or language comprehension learning to read – especially phonics problems with counting and arithmetic short term and working memory (holding something in your head while you do something else) – this is very important when HOME - ACTION DUCHENNEABOUT USWHAT IS DUCHENNENEWS & EVENTSGET INVOLVEDBECOME A MEMBERDONATE NOW Formed in 2001 Action Duchenne was the first national charity dedicated to supporting those living with Duchenne muscular dystrophy (‘DMD’). Our work to date has seen over £10m invested in ground-breaking research, educational programmes and campaigns. WHAT IS DUCHENNE MUSCULAR DYSTROPHY? At first it seemed like a mountain to climb to understand Samson’s condition fully, but we soon became experts in Duchenne. Lynnette Ellison, Parent If you are a newly diagnosed family, please head to our support page. Duchenne muscular dystrophy is a rare genetic condition caused by mutations in the dystrophin gene, which preventproduction of
EXHIBITOR PACKAGES 2021 Showcase your product and services, meet Duchenne families and become a part of the UK's preeminent Duchenne event in 2021 on 13-14November.
DUPLICATION MUTATIONS Duplication mutations. Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. These mutations prevent cells from producing the dystrophin protein which is needed for muscle function. OUR TEAM - ACTION DUCHENNE Grace Hackett, Alderwood Recruitment. From our Board of Trustees to our Staff, Action Duchenne is led by a diverse group of people with the majority having a direct connection to somebody living with Duchenne muscular dystrophy. We are passionate about giving people living with Duchenne longer and more enriched lives. Board ofTrustees.
HELP AND SUPPORT
From the first phone call, I felt completely understood and supported. Speaking to other DMD parents who work for Action Duchenne has truly been a lifeline for me, and they have never wavered in their support and patience. Duchenne Mum Thank you for coming to us for help and support. Action Duchenne isNONSENSE MUTATIONS
Nonsense mutations. Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. These mutations prevent cells from producing the dystrophin protein which is needed for muscle function. REVISED STANDARDS OF CARE FOR DUCHENNE MUSCULAR DYSTROPHY Revised Standards of Care for Duchenne muscular dystrophy. January 26, 2018 by Action Duchenne. We are delighted to announce that the revised Standards of Care for Duchenne were published in The Lancet Neurology this week; a high-impact peer-reviewed journal. The care guidelines were drafted by international experts from a wide range of DR SHUKO JOSEPH AWARDED THE LORBER PRIZE Dr Shuko Joseph awarded the Lorber Prize. July 15, 2020 by Samantha. We are delighted to share the news that; Dr Shuko Joseph has won the Lorber Prize for best paediatric research paper for her work on growth and fracture using the UK NorthStar database that was published last year. The Lorber Prize is a prize awarded by the UK Royal College ofFATHER'S DAY ECARD
Send a Father's Day e-card and make a gift donation to Action Duchenne at the same time. It’s so quick and easy to send something meaningful to someone you love and it’s better for the environmenttoo.
HOME - ACTION DUCHENNEABOUT USWHAT IS DUCHENNENEWS & EVENTSGET INVOLVEDBECOME A MEMBERDONATE NOW Formed in 2001 Action Duchenne was the first national charity dedicated to supporting those living with Duchenne muscular dystrophy (‘DMD’). Our work to date has seen over £10m invested in ground-breaking research, educational programmes and campaigns. WHAT IS DUCHENNE MUSCULAR DYSTROPHY? At first it seemed like a mountain to climb to understand Samson’s condition fully, but we soon became experts in Duchenne. Lynnette Ellison, Parent If you are a newly diagnosed family, please head to our support page. Duchenne muscular dystrophy is a rare genetic condition caused by mutations in the dystrophin gene, which preventproduction of
EXHIBITOR PACKAGES 2021 Showcase your product and services, meet Duchenne families and become a part of the UK's preeminent Duchenne event in 2021 on 13-14November.
DUPLICATION MUTATIONS Duplication mutations. Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. These mutations prevent cells from producing the dystrophin protein which is needed for muscle function. OUR TEAM - ACTION DUCHENNE Grace Hackett, Alderwood Recruitment. From our Board of Trustees to our Staff, Action Duchenne is led by a diverse group of people with the majority having a direct connection to somebody living with Duchenne muscular dystrophy. We are passionate about giving people living with Duchenne longer and more enriched lives. Board ofTrustees.
HELP AND SUPPORT
From the first phone call, I felt completely understood and supported. Speaking to other DMD parents who work for Action Duchenne has truly been a lifeline for me, and they have never wavered in their support and patience. Duchenne Mum Thank you for coming to us for help and support. Action Duchenne isNONSENSE MUTATIONS
Nonsense mutations. Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. These mutations prevent cells from producing the dystrophin protein which is needed for muscle function. REVISED STANDARDS OF CARE FOR DUCHENNE MUSCULAR DYSTROPHY Revised Standards of Care for Duchenne muscular dystrophy. January 26, 2018 by Action Duchenne. We are delighted to announce that the revised Standards of Care for Duchenne were published in The Lancet Neurology this week; a high-impact peer-reviewed journal. The care guidelines were drafted by international experts from a wide range of DR SHUKO JOSEPH AWARDED THE LORBER PRIZE Dr Shuko Joseph awarded the Lorber Prize. July 15, 2020 by Samantha. We are delighted to share the news that; Dr Shuko Joseph has won the Lorber Prize for best paediatric research paper for her work on growth and fracture using the UK NorthStar database that was published last year. The Lorber Prize is a prize awarded by the UK Royal College ofFATHER'S DAY ECARD
Send a Father's Day e-card and make a gift donation to Action Duchenne at the same time. It’s so quick and easy to send something meaningful to someone you love and it’s better for the environmenttoo.
ACTION DUCHENNE RECEIVES PEER-TO-PEER SUPPORT GRANT The hundreds of children, young people and adults living with Duchenne muscular dystrophy (DMD) in the United Kingdom and their families face many challenges which have been exacerbated by COVID-19 and lock-down.. At a time when many people in the general population are re-emerging from the past 18 months of lock-down, the lasting effects of isolation are manifesting in the Duchenne WHAT WE DO - ACTION DUCHENNE Action Duchenne is at the heart of the Duchenne muscular dystrophy community. 50% of our staff and Trustees have a child living with the condition and this provides real, on-the-spot expertise on what the families we support families need and the situations they face. ABOUT US - ACTION DUCHENNE Dan Brown has been running endurance events since January last year to raise money for Action Duchenne. On 5th June he completed his last endurance event – running 40 miles in a 24 hour race. OUR TEAM - ACTION DUCHENNE Grace Hackett, Alderwood Recruitment. From our Board of Trustees to our Staff, Action Duchenne is led by a diverse group of people with the majority having a direct connection to somebody living with Duchenne muscular dystrophy. We are passionate about giving people living with Duchenne longer and more enriched lives. Board ofTrustees.
EXHIBITOR PACKAGES 2021 Showcase your product and services, meet Duchenne families and become a part of the UK's preeminent Duchenne event in 2021 on 13-14November.
NEWS & EVENTS
Action Duchenne is asking for nominations to win a £1,000 Movement for Good award from Ecclesiastical Insurance Group. Action Duchenne is encouraging people to nominate them for a chance to win £1,000 as part of specialist insurer Ecclesiastical’s Movement for Good awards, which is giving £1million away to charities this summer. ADULTS LIVING WITH DUCHENNE MUSCULAR DYSTROPHY Daniel Messenger (adult living with Duchenne) When Action Duchenne was founded in 2001, the average life expectancy for a young person living in the UK with Duchenne was late teens. It is now late 20s with more people than ever living into their 30s and 40s. YouTube.NONSENSE MUTATIONS
Nonsense mutations. Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. These mutations prevent cells from producing the dystrophin protein which is needed for muscle function. LEARNING AND BEHAVIOUR IN DUCHENNE There are established behaviour and learning risks in Duchenne. Published studies have shown difficulties in the following areas: speech delay and/or language comprehension learning to read – especially phonics problems with counting and arithmetic short term and working memory (holding something in your head while you do something else) – this is very important whenFATHER'S DAY ECARD
Send a Father's Day e-card and make a gift donation to Action Duchenne at the same time. It’s so quick and easy to send something meaningful to someone you love and it’s better for the environmenttoo.
HOME - ACTION DUCHENNEABOUT USWHAT IS DUCHENNENEWS & EVENTSGET INVOLVEDBECOME A MEMBERDONATE NOW Formed in 2001 Action Duchenne was the first national charity dedicated to supporting those living with Duchenne muscular dystrophy (‘DMD’). Our work to date has seen over £10m invested in ground-breaking research, educational programmes and campaigns. OUR TEAM - ACTION DUCHENNE Grace Hackett, Alderwood Recruitment. From our Board of Trustees to our Staff, Action Duchenne is led by a diverse group of people with the majority having a direct connection to somebody living with Duchenne muscular dystrophy. We are passionate about giving people living with Duchenne longer and more enriched lives. Board ofTrustees.
HELP AND SUPPORT
From the first phone call, I felt completely understood and supported. Speaking to other DMD parents who work for Action Duchenne has truly been a lifeline for me, and they have never wavered in their support and patience. Duchenne Mum Thank you for coming to us for help and support. Action Duchenne is DUPLICATION MUTATIONS Duplication mutations. Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. These mutations prevent cells from producing the dystrophin protein which is needed for muscle function.NONSENSE MUTATIONS
Nonsense mutations. Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. These mutations prevent cells from producing the dystrophin protein which is needed for muscle function. REVISED STANDARDS OF CARE FOR DUCHENNE MUSCULAR DYSTROPHY Revised Standards of Care for Duchenne muscular dystrophy. January 26, 2018 by Action Duchenne. We are delighted to announce that the revised Standards of Care for Duchenne were published in The Lancet Neurology this week; a high-impact peer-reviewed journal. The care guidelines were drafted by international experts from a wide range of DR SHUKO JOSEPH AWARDED THE LORBER PRIZE Dr Shuko Joseph awarded the Lorber Prize. July 15, 2020 by Samantha. We are delighted to share the news that; Dr Shuko Joseph has won the Lorber Prize for best paediatric research paper for her work on growth and fracture using the UK NorthStar database that was published last year. The Lorber Prize is a prize awarded by the UK Royal College ofSTANDARDS OF CARE
This document was written by leading clinicians from around the world and sets out the care that people living with the condition should receive. The standards of care is a technical document, so Treat-NMD has released a families guide that is available for download . This gives an overview of different areas of care including bone health TALKING WITH YOUR CHILDREN ABOUT DUCHENNE Talking with your children about Duchenne. Thank you to everyone who joined us online for our FREE webinar with Dr David Schonfeld – talking with your children about Duchenne muscular dystrophy (diagnosis, treatment, hopes and dreams). It was a powerful and highly informative session, with plenty of great questions from the audience. STOP CODON READTHROUGH All genes contain a stop and start codon so that the machinery which translates the instructions encoding a protein knows where to start and stop reading. According to the TREAT-NMD DMD global database, about 10-15% of DMD patients are affected by a nonsense stop codon mutation. This is where a stop codon is inserted into the middle HOME - ACTION DUCHENNEABOUT USWHAT IS DUCHENNENEWS & EVENTSGET INVOLVEDBECOME A MEMBERDONATE NOW Formed in 2001 Action Duchenne was the first national charity dedicated to supporting those living with Duchenne muscular dystrophy (‘DMD’). Our work to date has seen over £10m invested in ground-breaking research, educational programmes and campaigns. OUR TEAM - ACTION DUCHENNE Grace Hackett, Alderwood Recruitment. From our Board of Trustees to our Staff, Action Duchenne is led by a diverse group of people with the majority having a direct connection to somebody living with Duchenne muscular dystrophy. We are passionate about giving people living with Duchenne longer and more enriched lives. Board ofTrustees.
HELP AND SUPPORT
From the first phone call, I felt completely understood and supported. Speaking to other DMD parents who work for Action Duchenne has truly been a lifeline for me, and they have never wavered in their support and patience. Duchenne Mum Thank you for coming to us for help and support. Action Duchenne is DUPLICATION MUTATIONS Duplication mutations. Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. These mutations prevent cells from producing the dystrophin protein which is needed for muscle function.NONSENSE MUTATIONS
Nonsense mutations. Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. These mutations prevent cells from producing the dystrophin protein which is needed for muscle function. REVISED STANDARDS OF CARE FOR DUCHENNE MUSCULAR DYSTROPHY Revised Standards of Care for Duchenne muscular dystrophy. January 26, 2018 by Action Duchenne. We are delighted to announce that the revised Standards of Care for Duchenne were published in The Lancet Neurology this week; a high-impact peer-reviewed journal. The care guidelines were drafted by international experts from a wide range of DR SHUKO JOSEPH AWARDED THE LORBER PRIZE Dr Shuko Joseph awarded the Lorber Prize. July 15, 2020 by Samantha. We are delighted to share the news that; Dr Shuko Joseph has won the Lorber Prize for best paediatric research paper for her work on growth and fracture using the UK NorthStar database that was published last year. The Lorber Prize is a prize awarded by the UK Royal College ofSTANDARDS OF CARE
This document was written by leading clinicians from around the world and sets out the care that people living with the condition should receive. The standards of care is a technical document, so Treat-NMD has released a families guide that is available for download . This gives an overview of different areas of care including bone health TALKING WITH YOUR CHILDREN ABOUT DUCHENNE Talking with your children about Duchenne. Thank you to everyone who joined us online for our FREE webinar with Dr David Schonfeld – talking with your children about Duchenne muscular dystrophy (diagnosis, treatment, hopes and dreams). It was a powerful and highly informative session, with plenty of great questions from the audience. STOP CODON READTHROUGH All genes contain a stop and start codon so that the machinery which translates the instructions encoding a protein knows where to start and stop reading. According to the TREAT-NMD DMD global database, about 10-15% of DMD patients are affected by a nonsense stop codon mutation. This is where a stop codon is inserted into the middle WHAT WE DO - ACTION DUCHENNE Action Duchenne is at the heart of the Duchenne muscular dystrophy community. 50% of our staff and Trustees have a child living with the condition and this provides real, on-the-spot expertise on what the families we support families need and the situations they face. OUR TEAM - ACTION DUCHENNE Grace Hackett, Alderwood Recruitment. From our Board of Trustees to our Staff, Action Duchenne is led by a diverse group of people with the majority having a direct connection to somebody living with Duchenne muscular dystrophy. We are passionate about giving people living with Duchenne longer and more enriched lives. Board ofTrustees.
ABOUT US - ACTION DUCHENNE Dan Brown has been running endurance events since January last year to raise money for Action Duchenne. On 5th June he completed his last endurance event – running 40 miles in a 24 hour race. EVENTS - ACTION DUCHENNE Take a look at our events list below. Can’t see what you are looking for? You can find an event in your local area here, take on a virtual event or contact us to find out about other events we can get places in. Looking for a different event? Contact us for more information info@actionduchenne.org ADULTS LIVING WITH DUCHENNE MUSCULAR DYSTROPHY Daniel Messenger (adult living with Duchenne) When Action Duchenne was founded in 2001, the average life expectancy for a young person living in the UK with Duchenne was late teens. It is now late 20s with more people than ever living into their 30s and 40s. YouTube.NONSENSE MUTATIONS
Nonsense mutations. Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. These mutations prevent cells from producing the dystrophin protein which is needed for muscle function. DUCHENNE NANA WALKS 100 MILES A big congratulations to Linda Smith for completing her 100 mile walking challenge this week! She set herself the challenge to raise money for Action Duchenne, in the place of people giving her birthday cards and presents.. Linda is a dedicated Duchenne Nana, a great lover of walking, nature and the outdoors. Despite this being a really tough time for her and her family she has clocked up herSTANDARDS OF CARE
This document was written by leading clinicians from around the world and sets out the care that people living with the condition should receive. The standards of care is a technical document, so Treat-NMD has released a families guide that is available for download . This gives an overview of different areas of care including bone health LEARNING AND BEHAVIOUR IN DUCHENNE There are established behaviour and learning risks in Duchenne. Published studies have shown difficulties in the following areas: speech delay and/or language comprehension learning to read – especially phonics problems with counting and arithmetic short term and working memory (holding something in your head while you do something else) – this is very important when STOP CODON READTHROUGH All genes contain a stop and start codon so that the machinery which translates the instructions encoding a protein knows where to start and stop reading. According to the TREAT-NMD DMD global database, about 10-15% of DMD patients are affected by a nonsense stop codon mutation. This is where a stop codon is inserted into the middle HOME - ACTION DUCHENNEABOUT USWHAT IS DUCHENNENEWS & EVENTSGET INVOLVEDBECOME A MEMBERDONATE NOW Formed in 2001 Action Duchenne was the first national charity dedicated to supporting those living with Duchenne muscular dystrophy (‘DMD’). Our work to date has seen over £10m invested in ground-breaking research, educational programmes and campaigns.WHAT IS DUCHENNE?
Action Duchenne is asking for nominations to win a £1,000 Movement for Good award from Ecclesiastical Insurance Group. Action Duchenne is encouraging people to nominate them for a chance to win £1,000 as part of specialist insurer Ecclesiastical’s Movement for Good awards, which is giving £1million away to charities this summer. WHAT WE DO - ACTION DUCHENNESEE MORE ON ACTIONDUCHENNE.ORG TEENAGERS - ACTION DUCHENNE Takin’ Charge was Action Duchenne’s Lottery-funded Transition to Adulthood Project for young people with Duchenne aged 14 – 19 years. The Takin’ Charge programme provided aspirational information for teenagers and their families about the choices available beyond school, including further education, training and/or employmentoptions
HELP AND SUPPORT
From the first phone call, I felt completely understood and supported. Speaking to other DMD parents who work for Action Duchenne has truly been a lifeline for me, and they have never wavered in their support and patience. Duchenne Mum Thank you for coming to us for help and support. Action Duchenne is OUR TEAM - ACTION DUCHENNE Grace Hackett, Alderwood Recruitment. From our Board of Trustees to our Staff, Action Duchenne is led by a diverse group of people with the majority having a direct connection to somebody living with Duchenne muscular dystrophy. We are passionate about giving people living with Duchenne longer and more enriched lives. Board ofTrustees.
NONSENSE MUTATIONS
Nonsense mutations. Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. These mutations prevent cells from producing the dystrophin protein which is needed for muscle function. DUPLICATION MUTATIONS Duplication mutations. Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. These mutations prevent cells from producing the dystrophin protein which is needed for muscle function. DR SHUKO JOSEPH AWARDED THE LORBER PRIZE Dr Shuko Joseph awarded the Lorber Prize. July 15, 2020 by Samantha. We are delighted to share the news that; Dr Shuko Joseph has won the Lorber Prize for best paediatric research paper for her work on growth and fracture using the UK NorthStar database that was published last year. The Lorber Prize is a prize awarded by the UK Royal College of REVISED STANDARDS OF CARE FOR DUCHENNE MUSCULAR DYSTROPHY Revised Standards of Care for Duchenne muscular dystrophy. January 26, 2018 by Action Duchenne. We are delighted to announce that the revised Standards of Care for Duchenne were published in The Lancet Neurology this week; a high-impact peer-reviewed journal. The care guidelines were drafted by international experts from a wide range of HOME - ACTION DUCHENNEABOUT USWHAT IS DUCHENNENEWS & EVENTSGET INVOLVEDBECOME A MEMBERDONATE NOW Formed in 2001 Action Duchenne was the first national charity dedicated to supporting those living with Duchenne muscular dystrophy (‘DMD’). Our work to date has seen over £10m invested in ground-breaking research, educational programmes and campaigns.WHAT IS DUCHENNE?
Action Duchenne is asking for nominations to win a £1,000 Movement for Good award from Ecclesiastical Insurance Group. Action Duchenne is encouraging people to nominate them for a chance to win £1,000 as part of specialist insurer Ecclesiastical’s Movement for Good awards, which is giving £1million away to charities this summer. WHAT WE DO - ACTION DUCHENNESEE MORE ON ACTIONDUCHENNE.ORG TEENAGERS - ACTION DUCHENNE Takin’ Charge was Action Duchenne’s Lottery-funded Transition to Adulthood Project for young people with Duchenne aged 14 – 19 years. The Takin’ Charge programme provided aspirational information for teenagers and their families about the choices available beyond school, including further education, training and/or employmentoptions
HELP AND SUPPORT
From the first phone call, I felt completely understood and supported. Speaking to other DMD parents who work for Action Duchenne has truly been a lifeline for me, and they have never wavered in their support and patience. Duchenne Mum Thank you for coming to us for help and support. Action Duchenne is OUR TEAM - ACTION DUCHENNE Grace Hackett, Alderwood Recruitment. From our Board of Trustees to our Staff, Action Duchenne is led by a diverse group of people with the majority having a direct connection to somebody living with Duchenne muscular dystrophy. We are passionate about giving people living with Duchenne longer and more enriched lives. Board ofTrustees.
NONSENSE MUTATIONS
Nonsense mutations. Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. These mutations prevent cells from producing the dystrophin protein which is needed for muscle function. DUPLICATION MUTATIONS Duplication mutations. Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. These mutations prevent cells from producing the dystrophin protein which is needed for muscle function. DR SHUKO JOSEPH AWARDED THE LORBER PRIZE Dr Shuko Joseph awarded the Lorber Prize. July 15, 2020 by Samantha. We are delighted to share the news that; Dr Shuko Joseph has won the Lorber Prize for best paediatric research paper for her work on growth and fracture using the UK NorthStar database that was published last year. The Lorber Prize is a prize awarded by the UK Royal College of REVISED STANDARDS OF CARE FOR DUCHENNE MUSCULAR DYSTROPHY Revised Standards of Care for Duchenne muscular dystrophy. January 26, 2018 by Action Duchenne. We are delighted to announce that the revised Standards of Care for Duchenne were published in The Lancet Neurology this week; a high-impact peer-reviewed journal. The care guidelines were drafted by international experts from a wide range of WHAT WE DO - ACTION DUCHENNE Action Duchenne is at the heart of the Duchenne muscular dystrophy community. 50% of our staff and Trustees have a child living with the condition and this provides real, on-the-spot expertise on what the families we support families need and the situations they face.WHAT IS DUCHENNE?
Action Duchenne is asking for nominations to win a £1,000 Movement for Good award from Ecclesiastical Insurance Group. Action Duchenne is encouraging people to nominate them for a chance to win £1,000 as part of specialist insurer Ecclesiastical’s Movement for Good awards, which is giving £1million away to charities this summer.NEWS & EVENTS
Action Duchenne is asking for nominations to win a £1,000 Movement for Good award from Ecclesiastical Insurance Group. Action Duchenne is encouraging people to nominate them for a chance to win £1,000 as part of specialist insurer Ecclesiastical’s Movement for Good awards, which is giving £1million away to charities this summer. OUR VISION - ACTION DUCHENNE John Miller, grandparent. Action Duchenne has a very clear vision: a world where lives are no longer limited by Duchenne muscular dystrophy. We have three core objectives: Developing effective treatments for all by funding research, supporting clinical trials and campaigning for access. Building a community by uniting and supportingfamilies
GENETICS EXPLAINED
Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. This short video with Dr Annemieke Aartsma-Rus gives an overview of genetics and genetic diagnosis in Duchenne . Duchenne can GUIDES AND INFORMATION Action Duchenne is a phenomenal organization, and they really lead the way in supporting DMD families in the UK. I can’t say enough. James Poysky (Parent) As well as funding research into potential treatments and one day a cure, we also produce links to a range of resources to benefit the Duchenne community. Action DuchenneNONSENSE MUTATIONS
Nonsense mutations. Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. These mutations prevent cells from producing the dystrophin protein which is needed for muscle function. ADULTS LIVING WITH DUCHENNE MUSCULAR DYSTROPHY Daniel Messenger (adult living with Duchenne) When Action Duchenne was founded in 2001, the average life expectancy for a young person living in the UK with Duchenne was late teens. It is now late 20s with more people than ever living into their 30s and 40s. YouTube. DONATE NOW - ACTION DUCHENNE What your donation could mean. £20. Could pay for a newly diagnosed family to receive an initial support telephone call and vital information pack. £50. Could fund one full hour of research. £100. Could contribute to bringing a Duchenne science education event to our families across the UK. £500.STANDARDS OF CARE
This document was written by leading clinicians from around the world and sets out the care that people living with the condition should receive. The standards of care is a technical document, so Treat-NMD has released a families guide that is available for download . This gives an overview of different areas of care including bone health HOME - ACTION DUCHENNEABOUT USWHAT IS DUCHENNENEWS & EVENTSGET INVOLVEDBECOME A MEMBERDONATE NOW Formed in 2001 Action Duchenne was the first national charity dedicated to supporting those living with Duchenne muscular dystrophy (‘DMD’). Our work to date has seen over £10m invested in ground-breaking research, educational programmes and campaigns.WHAT IS DUCHENNE?
Action Duchenne is asking for nominations to win a £1,000 Movement for Good award from Ecclesiastical Insurance Group. Action Duchenne is encouraging people to nominate them for a chance to win £1,000 as part of specialist insurer Ecclesiastical’s Movement for Good awards, which is giving £1million away to charities this summer. WHAT WE DO - ACTION DUCHENNESEE MORE ON ACTIONDUCHENNE.ORG TEENAGERS - ACTION DUCHENNE Takin’ Charge was Action Duchenne’s Lottery-funded Transition to Adulthood Project for young people with Duchenne aged 14 – 19 years. The Takin’ Charge programme provided aspirational information for teenagers and their families about the choices available beyond school, including further education, training and/or employmentoptions
HELP AND SUPPORT
From the first phone call, I felt completely understood and supported. Speaking to other DMD parents who work for Action Duchenne has truly been a lifeline for me, and they have never wavered in their support and patience. Duchenne Mum Thank you for coming to us for help and support. Action Duchenne is OUR TEAM - ACTION DUCHENNE Grace Hackett, Alderwood Recruitment. From our Board of Trustees to our Staff, Action Duchenne is led by a diverse group of people with the majority having a direct connection to somebody living with Duchenne muscular dystrophy. We are passionate about giving people living with Duchenne longer and more enriched lives. Board ofTrustees.
NONSENSE MUTATIONS
Nonsense mutations. Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. These mutations prevent cells from producing the dystrophin protein which is needed for muscle function. DUPLICATION MUTATIONS Duplication mutations. Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. These mutations prevent cells from producing the dystrophin protein which is needed for muscle function. DR SHUKO JOSEPH AWARDED THE LORBER PRIZE Dr Shuko Joseph awarded the Lorber Prize. July 15, 2020 by Samantha. We are delighted to share the news that; Dr Shuko Joseph has won the Lorber Prize for best paediatric research paper for her work on growth and fracture using the UK NorthStar database that was published last year. The Lorber Prize is a prize awarded by the UK Royal College of REVISED STANDARDS OF CARE FOR DUCHENNE MUSCULAR DYSTROPHYGENETICS OF DUCHENNE MUSCULAR DYSTROPHYPRECAUTIONS FOR DUCHENNE MUSCULAR DYSTRO…WHAT IS DUCHENNE MUSCULAR DYSTROPHYDUCHENNE MUSCULAR DYSTROPHY ORGANIZATIONSDUCHENNE MUSCULAR DYSTROPHY SYMPTOMSDUCHENNE MUSCULAR DYSTROPHY TESTING Revised Standards of Care for Duchenne muscular dystrophy. January 26, 2018 by Action Duchenne. We are delighted to announce that the revised Standards of Care for Duchenne were published in The Lancet Neurology this week; a high-impact peer-reviewed journal. The care guidelines were drafted by international experts from a wide range of HOME - ACTION DUCHENNEABOUT USWHAT IS DUCHENNENEWS & EVENTSGET INVOLVEDBECOME A MEMBERDONATE NOW Formed in 2001 Action Duchenne was the first national charity dedicated to supporting those living with Duchenne muscular dystrophy (‘DMD’). Our work to date has seen over £10m invested in ground-breaking research, educational programmes and campaigns.WHAT IS DUCHENNE?
Action Duchenne is asking for nominations to win a £1,000 Movement for Good award from Ecclesiastical Insurance Group. Action Duchenne is encouraging people to nominate them for a chance to win £1,000 as part of specialist insurer Ecclesiastical’s Movement for Good awards, which is giving £1million away to charities this summer. WHAT WE DO - ACTION DUCHENNESEE MORE ON ACTIONDUCHENNE.ORG TEENAGERS - ACTION DUCHENNE Takin’ Charge was Action Duchenne’s Lottery-funded Transition to Adulthood Project for young people with Duchenne aged 14 – 19 years. The Takin’ Charge programme provided aspirational information for teenagers and their families about the choices available beyond school, including further education, training and/or employmentoptions
HELP AND SUPPORT
From the first phone call, I felt completely understood and supported. Speaking to other DMD parents who work for Action Duchenne has truly been a lifeline for me, and they have never wavered in their support and patience. Duchenne Mum Thank you for coming to us for help and support. Action Duchenne is OUR TEAM - ACTION DUCHENNE Grace Hackett, Alderwood Recruitment. From our Board of Trustees to our Staff, Action Duchenne is led by a diverse group of people with the majority having a direct connection to somebody living with Duchenne muscular dystrophy. We are passionate about giving people living with Duchenne longer and more enriched lives. Board ofTrustees.
NONSENSE MUTATIONS
Nonsense mutations. Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. These mutations prevent cells from producing the dystrophin protein which is needed for muscle function. DUPLICATION MUTATIONS Duplication mutations. Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. These mutations prevent cells from producing the dystrophin protein which is needed for muscle function. DR SHUKO JOSEPH AWARDED THE LORBER PRIZE Dr Shuko Joseph awarded the Lorber Prize. July 15, 2020 by Samantha. We are delighted to share the news that; Dr Shuko Joseph has won the Lorber Prize for best paediatric research paper for her work on growth and fracture using the UK NorthStar database that was published last year. The Lorber Prize is a prize awarded by the UK Royal College of REVISED STANDARDS OF CARE FOR DUCHENNE MUSCULAR DYSTROPHYGENETICS OF DUCHENNE MUSCULAR DYSTROPHYPRECAUTIONS FOR DUCHENNE MUSCULAR DYSTRO…WHAT IS DUCHENNE MUSCULAR DYSTROPHYDUCHENNE MUSCULAR DYSTROPHY ORGANIZATIONSDUCHENNE MUSCULAR DYSTROPHY SYMPTOMSDUCHENNE MUSCULAR DYSTROPHY TESTING Revised Standards of Care for Duchenne muscular dystrophy. January 26, 2018 by Action Duchenne. We are delighted to announce that the revised Standards of Care for Duchenne were published in The Lancet Neurology this week; a high-impact peer-reviewed journal. The care guidelines were drafted by international experts from a wide range of WHAT WE DO - ACTION DUCHENNE Action Duchenne is at the heart of the Duchenne muscular dystrophy community. 50% of our staff and Trustees have a child living with the condition and this provides real, on-the-spot expertise on what the families we support families need and the situations they face.WHAT IS DUCHENNE?
Action Duchenne is asking for nominations to win a £1,000 Movement for Good award from Ecclesiastical Insurance Group. Action Duchenne is encouraging people to nominate them for a chance to win £1,000 as part of specialist insurer Ecclesiastical’s Movement for Good awards, which is giving £1million away to charities this summer.NEWS & EVENTS
Action Duchenne is asking for nominations to win a £1,000 Movement for Good award from Ecclesiastical Insurance Group. Action Duchenne is encouraging people to nominate them for a chance to win £1,000 as part of specialist insurer Ecclesiastical’s Movement for Good awards, which is giving £1million away to charities this summer. OUR VISION - ACTION DUCHENNE John Miller, grandparent. Action Duchenne has a very clear vision: a world where lives are no longer limited by Duchenne muscular dystrophy. We have three core objectives: Developing effective treatments for all by funding research, supporting clinical trials and campaigning for access. Building a community by uniting and supportingfamilies
GENETICS EXPLAINED
Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. This short video with Dr Annemieke Aartsma-Rus gives an overview of genetics and genetic diagnosis in Duchenne . Duchenne can GUIDES AND INFORMATION Action Duchenne is a phenomenal organization, and they really lead the way in supporting DMD families in the UK. I can’t say enough. James Poysky (Parent) As well as funding research into potential treatments and one day a cure, we also produce links to a range of resources to benefit the Duchenne community. Action DuchenneNONSENSE MUTATIONS
Nonsense mutations. Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. These mutations prevent cells from producing the dystrophin protein which is needed for muscle function. ADULTS LIVING WITH DUCHENNE MUSCULAR DYSTROPHY Daniel Messenger (adult living with Duchenne) When Action Duchenne was founded in 2001, the average life expectancy for a young person living in the UK with Duchenne was late teens. It is now late 20s with more people than ever living into their 30s and 40s. YouTube. DONATE NOW - ACTION DUCHENNE What your donation could mean. £20. Could pay for a newly diagnosed family to receive an initial support telephone call and vital information pack. £50. Could fund one full hour of research. £100. Could contribute to bringing a Duchenne science education event to our families across the UK. £500.STANDARDS OF CARE
This document was written by leading clinicians from around the world and sets out the care that people living with the condition should receive. The standards of care is a technical document, so Treat-NMD has released a families guide that is available for download . This gives an overview of different areas of care including bone health HOME - ACTION DUCHENNEABOUT USWHAT IS DUCHENNENEWS & EVENTSGET INVOLVEDBECOME A MEMBERDONATE NOW Formed in 2001 Action Duchenne was the first national charity dedicated to supporting those living with Duchenne muscular dystrophy (‘DMD’). Our work to date has seen over £10m invested in ground-breaking research, educational programmes and campaigns.WHAT IS DUCHENNE?
Action Duchenne is asking for nominations to win a £1,000 Movement for Good award from Ecclesiastical Insurance Group. Action Duchenne is encouraging people to nominate them for a chance to win £1,000 as part of specialist insurer Ecclesiastical’s Movement for Good awards, which is giving £1million away to charities this summer. WHAT WE DO - ACTION DUCHENNESEE MORE ON ACTIONDUCHENNE.ORG TEENAGERS - ACTION DUCHENNE Takin’ Charge was Action Duchenne’s Lottery-funded Transition to Adulthood Project for young people with Duchenne aged 14 – 19 years. The Takin’ Charge programme provided aspirational information for teenagers and their families about the choices available beyond school, including further education, training and/or employmentoptions
HELP AND SUPPORT
From the first phone call, I felt completely understood and supported. Speaking to other DMD parents who work for Action Duchenne has truly been a lifeline for me, and they have never wavered in their support and patience. Duchenne Mum Thank you for coming to us for help and support. Action Duchenne is OUR TEAM - ACTION DUCHENNE Grace Hackett, Alderwood Recruitment. From our Board of Trustees to our Staff, Action Duchenne is led by a diverse group of people with the majority having a direct connection to somebody living with Duchenne muscular dystrophy. We are passionate about giving people living with Duchenne longer and more enriched lives. Board ofTrustees.
NONSENSE MUTATIONS
Nonsense mutations. Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. These mutations prevent cells from producing the dystrophin protein which is needed for muscle function. DUPLICATION MUTATIONS Duplication mutations. Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. These mutations prevent cells from producing the dystrophin protein which is needed for muscle function. DR SHUKO JOSEPH AWARDED THE LORBER PRIZE Dr Shuko Joseph awarded the Lorber Prize. July 15, 2020 by Samantha. We are delighted to share the news that; Dr Shuko Joseph has won the Lorber Prize for best paediatric research paper for her work on growth and fracture using the UK NorthStar database that was published last year. The Lorber Prize is a prize awarded by the UK Royal College of REVISED STANDARDS OF CARE FOR DUCHENNE MUSCULAR DYSTROPHYGENETICS OF DUCHENNE MUSCULAR DYSTROPHYPRECAUTIONS FOR DUCHENNE MUSCULAR DYSTRO…WHAT IS DUCHENNE MUSCULAR DYSTROPHYDUCHENNE MUSCULAR DYSTROPHY ORGANIZATIONSDUCHENNE MUSCULAR DYSTROPHY SYMPTOMSDUCHENNE MUSCULAR DYSTROPHY TESTING Revised Standards of Care for Duchenne muscular dystrophy. January 26, 2018 by Action Duchenne. We are delighted to announce that the revised Standards of Care for Duchenne were published in The Lancet Neurology this week; a high-impact peer-reviewed journal. The care guidelines were drafted by international experts from a wide range of HOME - ACTION DUCHENNEABOUT USWHAT IS DUCHENNENEWS & EVENTSGET INVOLVEDBECOME A MEMBERDONATE NOW Formed in 2001 Action Duchenne was the first national charity dedicated to supporting those living with Duchenne muscular dystrophy (‘DMD’). Our work to date has seen over £10m invested in ground-breaking research, educational programmes and campaigns.WHAT IS DUCHENNE?
Action Duchenne is asking for nominations to win a £1,000 Movement for Good award from Ecclesiastical Insurance Group. Action Duchenne is encouraging people to nominate them for a chance to win £1,000 as part of specialist insurer Ecclesiastical’s Movement for Good awards, which is giving £1million away to charities this summer. WHAT WE DO - ACTION DUCHENNESEE MORE ON ACTIONDUCHENNE.ORG TEENAGERS - ACTION DUCHENNE Takin’ Charge was Action Duchenne’s Lottery-funded Transition to Adulthood Project for young people with Duchenne aged 14 – 19 years. The Takin’ Charge programme provided aspirational information for teenagers and their families about the choices available beyond school, including further education, training and/or employmentoptions
HELP AND SUPPORT
From the first phone call, I felt completely understood and supported. Speaking to other DMD parents who work for Action Duchenne has truly been a lifeline for me, and they have never wavered in their support and patience. Duchenne Mum Thank you for coming to us for help and support. Action Duchenne is OUR TEAM - ACTION DUCHENNE Grace Hackett, Alderwood Recruitment. From our Board of Trustees to our Staff, Action Duchenne is led by a diverse group of people with the majority having a direct connection to somebody living with Duchenne muscular dystrophy. We are passionate about giving people living with Duchenne longer and more enriched lives. Board ofTrustees.
NONSENSE MUTATIONS
Nonsense mutations. Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. These mutations prevent cells from producing the dystrophin protein which is needed for muscle function. DUPLICATION MUTATIONS Duplication mutations. Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. These mutations prevent cells from producing the dystrophin protein which is needed for muscle function. DR SHUKO JOSEPH AWARDED THE LORBER PRIZE Dr Shuko Joseph awarded the Lorber Prize. July 15, 2020 by Samantha. We are delighted to share the news that; Dr Shuko Joseph has won the Lorber Prize for best paediatric research paper for her work on growth and fracture using the UK NorthStar database that was published last year. The Lorber Prize is a prize awarded by the UK Royal College of REVISED STANDARDS OF CARE FOR DUCHENNE MUSCULAR DYSTROPHYGENETICS OF DUCHENNE MUSCULAR DYSTROPHYPRECAUTIONS FOR DUCHENNE MUSCULAR DYSTRO…WHAT IS DUCHENNE MUSCULAR DYSTROPHYDUCHENNE MUSCULAR DYSTROPHY ORGANIZATIONSDUCHENNE MUSCULAR DYSTROPHY SYMPTOMSDUCHENNE MUSCULAR DYSTROPHY TESTING Revised Standards of Care for Duchenne muscular dystrophy. January 26, 2018 by Action Duchenne. We are delighted to announce that the revised Standards of Care for Duchenne were published in The Lancet Neurology this week; a high-impact peer-reviewed journal. The care guidelines were drafted by international experts from a wide range of WHAT WE DO - ACTION DUCHENNE Action Duchenne is at the heart of the Duchenne muscular dystrophy community. 50% of our staff and Trustees have a child living with the condition and this provides real, on-the-spot expertise on what the families we support families need and the situations they face.WHAT IS DUCHENNE?
Action Duchenne is asking for nominations to win a £1,000 Movement for Good award from Ecclesiastical Insurance Group. Action Duchenne is encouraging people to nominate them for a chance to win £1,000 as part of specialist insurer Ecclesiastical’s Movement for Good awards, which is giving £1million away to charities this summer.NEWS & EVENTS
Action Duchenne is asking for nominations to win a £1,000 Movement for Good award from Ecclesiastical Insurance Group. Action Duchenne is encouraging people to nominate them for a chance to win £1,000 as part of specialist insurer Ecclesiastical’s Movement for Good awards, which is giving £1million away to charities this summer. OUR VISION - ACTION DUCHENNE John Miller, grandparent. Action Duchenne has a very clear vision: a world where lives are no longer limited by Duchenne muscular dystrophy. We have three core objectives: Developing effective treatments for all by funding research, supporting clinical trials and campaigning for access. Building a community by uniting and supportingfamilies
GENETICS EXPLAINED
Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. This short video with Dr Annemieke Aartsma-Rus gives an overview of genetics and genetic diagnosis in Duchenne . Duchenne can GUIDES AND INFORMATION Action Duchenne is a phenomenal organization, and they really lead the way in supporting DMD families in the UK. I can’t say enough. James Poysky (Parent) As well as funding research into potential treatments and one day a cure, we also produce links to a range of resources to benefit the Duchenne community. Action DuchenneNONSENSE MUTATIONS
Nonsense mutations. Duchenne is a genetic condition. This means the condition is caused by genetic mutations – alterations or changes – in a gene. Duchenne is caused by mutations in a single gene called the dystrophin gene. These mutations prevent cells from producing the dystrophin protein which is needed for muscle function. ADULTS LIVING WITH DUCHENNE MUSCULAR DYSTROPHY Daniel Messenger (adult living with Duchenne) When Action Duchenne was founded in 2001, the average life expectancy for a young person living in the UK with Duchenne was late teens. It is now late 20s with more people than ever living into their 30s and 40s. YouTube. DONATE NOW - ACTION DUCHENNE What your donation could mean. £20. Could pay for a newly diagnosed family to receive an initial support telephone call and vital information pack. £50. Could fund one full hour of research. £100. Could contribute to bringing a Duchenne science education event to our families across the UK. £500.STANDARDS OF CARE
This document was written by leading clinicians from around the world and sets out the care that people living with the condition should receive. The standards of care is a technical document, so Treat-NMD has released a families guide that is available for download . This gives an overview of different areas of care including bone health CloseSearch this website* Donate now
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SUPPORT FOR NEWLY DIAGNOSED FAMILIES We are here for you, every single step of the way. Find out how to getsupport.
RESEARCH, SUPPORT, EDUCATION Welcome to Action Duchenne. Our vital work focusses on; * Funding research for everyone living with Duchenne * Cutting-edge Duchenne science education programmes * World-class support for Duchenne families DONATE TO DUCHENNE RESEARCH The Big Ideas Fund is 100% restricted, so every penny goes to Duchenne research. Just £10,000 could fund an entire Duchenne research project! Make your donation really count.SUPPORTING YOU
There are around 2,500 people in the UK living with Duchenne muscular dystrophy. Action Duchenne is here for you, whether you are a parent facing a new diagnosis, or an adult who has been living with the condition for some time. DUCHENNE SCIENCE ON TOUR 2 You are invited to our roadshow to help you make important decisions around clinical trials and your child, young person or adult's care. DUCHENNE SCIENCE LIVE Watch all the episodes on our YouTube Duchenne science communicationchannel.
BECOME A MEMBER OF ACTION DUCHENNE Set up a regular monthly donation, receive a welcome pack, badge & t-shirt, along with invites to our regular Members' meetings SUPPORT FOR NEWLY DIAGNOSED FAMILIES We are here for you, every single step of the way. Find out how to getsupport.
RESEARCH, SUPPORT, EDUCATION Welcome to Action Duchenne. Our vital work focusses on; * Funding research for everyone living with Duchenne * Cutting-edge Duchenne science education programmes * World-class support for Duchenne families DONATE TO DUCHENNE RESEARCH The Big Ideas Fund is 100% restricted, so every penny goes to Duchenne research. Just £10,000 could fund an entire Duchenne research project! Make your donation really count.SUPPORTING YOU
There are around 2,500 people in the UK living with Duchenne muscular dystrophy. Action Duchenne is here for you, whether you are a parent facing a new diagnosis, or an adult who has been living with the condition for some time. DUCHENNE SCIENCE ON TOUR 2 You are invited to our roadshow to help you make important decisions around clinical trials and your child, young person or adult's care. DUCHENNE SCIENCE LIVE Watch all the episodes on our YouTube Duchenne science communicationchannel.
BECOME A MEMBER OF ACTION DUCHENNE Set up a regular monthly donation, receive a welcome pack, badge & t-shirt, along with invites to our regular Members' meetings SUPPORT FOR NEWLY DIAGNOSED FAMILIES We are here for you, every single step of the way. Find out how to getsupport.
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Are you looking for support or do you have questions about our work, research or fundraising? Contact our friendly team on 020 7250 8240, email us at info@actionduchenne.org or fill in our contact form. Our address: 49-51 East Road, London N1 6AHBECOME A MEMBER
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