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Resources
By providing you with these materials, we can help you better understand how to help manage Duchenne muscular dystrophy. You can download these materials right to your desktop.
A Summary of the DMD Care Considerations Working Group for Caregivers (English & Spanish)
Learn more about care guidelines for DMD that address a multidisciplinary approach and the continuum of care for DMD management.
Download Care Consideration—English ›
Download Care Consideration—Spanish ›
Navigating Scientific Publications Tool
Use this resource to familiarize yourself with the elements and terms that are commonly seen in different types of publications.
Download Navigating Scientific Publications Tool ›
REACH OUT TO THE DUCHENNE COMMUNITY
The Duchenne community can offer support to you and your family in many different ways.
ADVOCACY GROUPS ARE READY TO HELP
We know that there is more to treatment than just taking care of symptoms. You and your family also have your own individual interests and support needs. Advocacy groups play an important role in helping you connect and bond with other people affected by Duchenne as well as giving a public voice. The following patient advocacy groups are here to help by offering information, guidance, and support.
Advocacy groups in your community
Advocacy groups such as CureDuchenne, Muscular Dystrophy Association (MDA) and Parent Project Muscular Dystrophy (PPMD) are well known within the United states however support is not limited to these groups and there are local community groups that can help you as well.
| Cure Duchenne | Muscular Dystrophy Association (MDA) | Parent Project Muscular Dystrophy (PPMD) |
|---|---|---|
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| Cure Duchenne partners with biotech and pharmaceutical companies, academic institutions, and other organizations to help find a cure for Duchenne muscular dystrophy. | MDA is a nonprofit health organization that sponsors research to find effective treatments for neuromuscular diseases. | PPMD is the largest, most comprehensive nonprofit organization in the United States focused on ending Duchenne muscular dystrophy through research, advocacy, care, and education. |
| https://cureduchenne.org/ | https://mda.org/ | https://parentprojectmd.org |
PTC Therapeutics does not endorse organizations that sponsor linked external websites, products, or services that such organizations may offer; and does not control or guarantee the currency, accuracy, relevance or completeness of the information found on the linked external sites.
All trademarks included herein are the property of their respective owners.
FIND A CERTIFIED DUCHENNE CARE CENTER NEAR YOU
Certified Care Centers provide comprehensive care and services to people living with Duchenne muscular dystrophy. The goal of these centers is to make comprehensive care available and accessible to as many patients with Duchenne and their families as possible. PTC does not warrant, whether expressed or implied, that the list of centers is accurate or complete.
The Muscular Dystrophy Association has a network of 200 specialized clinics across the United States and Puerto Rico, each with a team of healthcare professionals all at one location. Find a local clinic near you by visiting mda.org/locate, or by calling (800) 572-1717.
The Certified Duchenne Care Center Program was developed by Parent Project Muscular Dystrophy, with the help of many experts, to certify clinics and measure results, helping to ensure that centers maintain the highest standards in clinical care for Duchenne. Click here for more information and to locate a local certified center.
PTC does not recommend or endorse any center, hospital, or healthcare professional included above for any purpose, nor is the list to verify a center’s, hospital’s, or specific healthcare professional’s credentials or qualifications. It is your responsibility to select a center, hospital, and/or healthcare professional appropriate to your needs, and you assume full responsibility for your interaction with any center, hospital, or healthcare professional you contact through the center list. PTC is not responsible for the medical care or advice given by any center, hospital, or healthcare professional you choose to contact.
Video Resources
Max's Story
Max Fernandez, a senior at Fordham University, has Duchenne muscular dystrophy, but it hasn’t stopped him from traveling the world and enjoying college life with the help of friends and family. In this video, Max shares his story, as well as challenges, common misconceptions about Duchenne, and advice for kids and parents.
How to Communicate with your Healthcare Providers
Once someone with Duchenne is in their teenage years, they will need to transition from a pediatric to an adult clinic. Knowing what to say to a doctor, and how, can be difficult, but this video has some useful tips. Sarah Tencer, MSW, talks about what to expect in your appointment, how to prepare for it, and what to do afterwards.
Challenging yourself
Being challenged doesn’t have to be a negative experience – it can allow you to achieve and grow. In this video, Sarah Tencer, MSW, talks about how setting GROW and SMART goals can provide positive challenges to help you take your life in the direction that you want it to go. She also discusses resilience and identifying the tools that will help you to cope when things don’t go as planned.
Achieving independence
As adulthood approaches, individuals with Duchenne muscular dystrophy may want to start thinking about how to achieve an independent lifestyle. In this video, Sarah Tencer, MSW, gives advice on managing money by setting realistic goals, and accessing public benefits. She also offers tips on entering employment, and what people may want to consider when searching for a place to live.
Managing transitions in Duchenne medical care
In this video, Amaris Sanchez, psychologist and expert in the formation of identity, talks about transitions in Duchenne medical care. This includes what needs to happen as part of an effective healthcare transition, who is involved and where to go for more information. This video is in Spanish.
Calf muscle/foot and ankle stretch
With the child sitting or lying with their legs out straight, grasp the heel bone in the palm of your hand, and pull it downwards as if trying to make the leg longer. Then, with your other hand or forearm, push the foot upwards towards the shin bone to provide the stretch.
Physiotherapy
Muscles and stretches
When muscles are weak they lose their elasticity (stretchiness) and the joints nearby can become stiff and tight, usually more in one direction than the other. A joint can then become fixed in one position.
Stretches help minimise the development of soft tissue tightening and prevent deformity which can affect mobility and balance and may cause pain.
Always consult your physiotherapist for advice or if you have any questions about stretching, and carry out the stretches as often as recommended by your physiotherapist. They should not be painful for the child – however, they may cause the muscle to feel a bit different and the child may need to become accustomed to this.
This video shows one of the stretches currently recommended for children with Duchenne muscular dystrophy. Your physiotherapist will advise which stretches to do. Do each stretch 5 times on each side, alternating legs/arms and holding each stretch for 10‒20 seconds.
Tips for stretching
- Ask the child to 'join in' or 'help' with the stretch if they can; this gives the child some control, enables the carer to see how much the child can move themselves and can make it easier for the person doing the stretches!
- Make sure the muscles are warmed up before stretching
- Your physiotherapist can show you how far to take each stretch ‒ be careful not to overdo it
- Stretches don’t need to be boring: Having a chat or listening to music together can be good distractions
These videos were filmed at Leeds Children's Hospital with kind permission from the patient, his family and Lindsey Pallant, Senior Physiotherapist, part of the Leeds Neuromuscular Team.
Using a standing wedge
These can be purchased or home made and can be a successful way of providing a prolonged self-stretch. The angle of the wedge should be 10‒20 degrees depending on the range of movement of the ankle. Ask your physiotherapist for advice. Standing for 15‒20 minutes at a table to play can be good way of getting a sustained stretch whilst distracted. Supervision is recommended.
Physiotherapy
Muscles and stretches
When muscles are weak they lose their elasticity (stretchiness) and the joints nearby can become stiff and tight, usually more in one direction than the other. A joint can then become fixed in one position.
Stretches help minimise the development of soft tissue tightening and prevent deformity which can affect mobility and balance and may cause pain.
Always consult your physiotherapist for advice or if you have any questions about stretching, and carry out the stretches as often as recommended by your physiotherapist. They should not be painful for the child – however, they may cause the muscle to feel a bit different and the child may need to become accustomed to this.
This video shows one of the stretches currently recommended for children with Duchenne muscular dystrophy. Your physiotherapist will advise which stretches to do. Do each stretch 5 times on each side, alternating legs/arms and holding each stretch for 10‒20 seconds.
Tips for stretching
- Ask the child to 'join in' or 'help' with the stretch if they can; this gives the child some control, enables the carer to see how much the child can move themselves and can make it easier for the person doing the stretches!
- Make sure the muscles are warmed up before stretching
- Your physiotherapist can show you how far to take each stretch ‒ be careful not to overdo it
- Stretches don’t need to be boring: Having a chat or listening to music together can be good distractions
These videos were filmed at Leeds Children's Hospital with kind permission from the patient, his family and Lindsey Pallant, Senior Physiotherapist, part of the Leeds Neuromuscular Team.
Upwards hip stretch
With the child lying on their tummy, put one hand on their bottom to keep their pelvis still. With the other hand lift the leg up into the air until you feel some resistance (about 30 degrees), then hold.
Physiotherapy
Muscles and stretches
When muscles are weak they lose their elasticity (stretchiness) and the joints nearby can become stiff and tight, usually more in one direction than the other. A joint can then become fixed in one position.
Stretches help minimise the development of soft tissue tightening and prevent deformity which can affect mobility and balance and may cause pain.
Always consult your physiotherapist for advice or if you have any questions about stretching, and carry out the stretches as often as recommended by your physiotherapist. They should not be painful for the child – however, they may cause the muscle to feel a bit different and the child may need to become accustomed to this.
This video shows one of the stretches currently recommended for children with Duchenne muscular dystrophy. Your physiotherapist will advise which stretches to do. Do each stretch 5 times on each side, alternating legs/arms and holding each stretch for 10‒20 seconds.
Tips for stretching
- Ask the child to 'join in' or 'help' with the stretch if they can; this gives the child some control, enables the carer to see how much the child can move themselves and can make it easier for the person doing the stretches!
- Make sure the muscles are warmed up before stretching
- Your physiotherapist can show you how far to take each stretch ‒ be careful not to overdo it
- Stretches don’t need to be boring: Having a chat or listening to music together can be good distractions
These videos were filmed at Leeds Children's Hospital with kind permission from the patient, his family and Lindsey Pallant, Senior Physiotherapist, part of the Leeds Neuromuscular Team.
Sideways hip stretch
With the child lying on their tummy, put one hand on their bottom to keep their pelvis still. With the other hand lift the leg up and then pull it towards you, across the midline towards the other leg.
Physiotherapy
Muscles and stretches
When muscles are weak they lose their elasticity (stretchiness) and the joints nearby can become stiff and tight, usually more in one direction than the other. A joint can then become fixed in one position.
Stretches help minimise the development of soft tissue tightening and prevent deformity which can affect mobility and balance and may cause pain.
Always consult your physiotherapist for advice or if you have any questions about stretching, and carry out the stretches as often as recommended by your physiotherapist. They should not be painful for the child – however, they may cause the muscle to feel a bit different and the child may need to become accustomed to this.
This video shows one of the stretches currently recommended for children with Duchenne muscular dystrophy. Your physiotherapist will advise which stretches to do. Do each stretch 5 times on each side, alternating legs/arms and holding each stretch for 10‒20 seconds.
Tips for stretching
- Ask the child to 'join in' or 'help' with the stretch if they can; this gives the child some control, enables the carer to see how much the child can move themselves and can make it easier for the person doing the stretches!
- Make sure the muscles are warmed up before stretching
- Your physiotherapist can show you how far to take each stretch ‒ be careful not to overdo it
- Stretches don’t need to be boring: Having a chat or listening to music together can be good distractions
These videos were filmed at Leeds Children's Hospital with kind permission from the patient, his family and Lindsey Pallant, Senior Physiotherapist, part of the Leeds Neuromuscular Team.
Knee/hamstring stretch
With the child lying on their back, lift the leg into the air so the hip is at 90 degrees. Ask them to straighten their knee and hold. (Note: hamstrings help stabilise the pelvis in standing and should only be stretched if particularly tight).
Physiotherapy
Muscles and stretches
When muscles are weak they lose their elasticity (stretchiness) and the joints nearby can become stiff and tight, usually more in one direction than the other. A joint can then become fixed in one position.
Stretches help minimise the development of soft tissue tightening and prevent deformity which can affect mobility and balance and may cause pain.
Always consult your physiotherapist for advice or if you have any questions about stretching, and carry out the stretches as often as recommended by your physiotherapist. They should not be painful for the child – however, they may cause the muscle to feel a bit different and the child may need to become accustomed to this.
This video shows one of the stretches currently recommended for children with Duchenne muscular dystrophy. Your physiotherapist will advise which stretches to do. Do each stretch 5 times on each side, alternating legs/arms and holding each stretch for 10‒20 seconds.
Tips for stretching
- Ask the child to 'join in' or 'help' with the stretch if they can; this gives the child some control, enables the carer to see how much the child can move themselves and can make it easier for the person doing the stretches!
- Make sure the muscles are warmed up before stretching
- Your physiotherapist can show you how far to take each stretch ‒ be careful not to overdo it
- Stretches don’t need to be boring: Having a chat or listening to music together can be good distractions
These videos were filmed at Leeds Children's Hospital with kind permission from the patient, his family and Lindsey Pallant, Senior Physiotherapist, part of the Leeds Neuromuscular Team.
Elbow, wrist and hand
Hold the child's arm at the elbow and straighten it. With your other hand hold the child's hand, palm up. Take the wrist back and hold the fingers open.
Physiotherapy
Muscles and stretches
When muscles are weak they lose their elasticity (stretchiness) and the joints nearby can become stiff and tight, usually more in one direction than the other. A joint can then become fixed in one position.
Stretches help minimise the development of soft tissue tightening and prevent deformity which can affect mobility and balance and may cause pain.
Always consult your physiotherapist for advice or if you have any questions about stretching, and carry out the stretches as often as recommended by your physiotherapist. They should not be painful for the child – however, they may cause the muscle to feel a bit different and the child may need to become accustomed to this.
This video shows one of the stretches currently recommended for children with Duchenne muscular dystrophy. Your physiotherapist will advise which stretches to do. Do each stretch 5 times on each side, alternating legs/arms and holding each stretch for 10‒20 seconds.
Tips for stretching
- Ask the child to 'join in' or 'help' with the stretch if they can; this gives the child some control, enables the carer to see how much the child can move themselves and can make it easier for the person doing the stretches!
- Make sure the muscles are warmed up before stretching
- Your physiotherapist can show you how far to take each stretch ‒ be careful not to overdo it
- Stretches don’t need to be boring: Having a chat or listening to music together can be good distractions
These videos were filmed at Leeds Children's Hospital with kind permission from the patient, his family and Lindsey Pallant, Senior Physiotherapist, part of the Leeds Neuromuscular Team.
Wrist and hand self-stretch
This can also be performed with the hands flat against a table top or wall.
Physiotherapy
Muscles and stretches
When muscles are weak they lose their elasticity (stretchiness) and the joints nearby can become stiff and tight, usually more in one direction than the other. A joint can then become fixed in one position.
Stretches help minimise the development of soft tissue tightening and prevent deformity which can affect mobility and balance and may cause pain.
Always consult your physiotherapist for advice or if you have any questions about stretching, and carry out the stretches as often as recommended by your physiotherapist. They should not be painful for the child – however, they may cause the muscle to feel a bit different and the child may need to become accustomed to this.
This video shows one of the stretches currently recommended for children with Duchenne muscular dystrophy. Your physiotherapist will advise which stretches to do. Do each stretch 5 times on each side, alternating legs/arms and holding each stretch for 10‒20 seconds.
Tips for stretching
- Ask the child to 'join in' or 'help' with the stretch if they can; this gives the child some control, enables the carer to see how much the child can move themselves and can make it easier for the person doing the stretches!
- Make sure the muscles are warmed up before stretching
- Your physiotherapist can show you how far to take each stretch ‒ be careful not to overdo it
- Stretches don’t need to be boring: Having a chat or listening to music together can be good distractions
These videos were filmed at Leeds Children's Hospital with kind permission from the patient, his family and Lindsey Pallant, Senior Physiotherapist, part of the Leeds Neuromuscular Team.