Dr. Pauline Evers
Project Manager Treat-NMD, European Neuromuscular Centre
Lt. Gen. van Heutszlaan 6
3743 JN Baarn
tel. (31) 35 5480478
fax (31) 35 5480499
email address: evers@enmc.org
www.enmc.org
www.treat-nmd.org

Dear Member

The United Nations is pleased to announce that the Secretariat for the Convention on the Rights of Persons with Disabilities, at the United Nations Department of Economic and Social Affairs (DESA), has launched a new website http://www.un.org/disabilities/

With kind regards

Donna Corbett
International Alliance Co-ordinator
International Alliance of ALS/MND Associations
United in the worldwide fight against ALS/MND

Tel: +44 1604 611821
Fax: +44 1604 624726

Email: alliance@alsmndalliance.org

International Alliance Annual Meeting
28th/29th November 2007
Toronto, Canada
Further Information: alliance@alsmndalliance.org

A £2.375 M donation pledge received by the MND Research Foundation will fund new grants for biomedical research to boost the search for a cure for MND

The fifteenth MND Care Centre has been opened in Leeds by Health Minister Ivan Lewis.

The MND Association’s John’s Journey campaign has scooped Best Communications Campaign at the Third Sector Excellence Awards 2007.

For more information please visit www.mndassociation.org

Dear friends and Colleagues:

I have just completed a rather detailed report on the annual meeting of the American Parent Project Muscular Dystrophy (PPMD) which took place in Philadelphia in July of this year. I am sending this new report to you, and to about 600 other families with Duchenne boys, patients, pediatricians, researchers, parents’ associations and other people who have asked me to receive regularly my Duchenne research reports. I am enclosing this report as a PDF file, I hope, you can open and download it. If not, please ask me for a Word file of the report.

The report contains the summaries of only the most important scientific presentations at the meeting because I am a biochemist and not a medical or social expert. It is not a scientific publication but a text written especially for you, the families with Duchenne boys. I have tried to write it in a way that will let you understand what the clinicians and scientists are doing in the laboratories and hospitals to “END DUCHENNE” – the title of the report –, for finding a therapy for your children.

Translations of this report into German and Spanish will be available at about the beginning of next year. If you wish to translate it into your own language, you may do so under the condition that you send me a copy of your translation. You may also put it on your internet pages if they concern muscular dystrophy.

The next report will be an update of the Philadelphia report with new information from the meeting of the British Parent Project Action Duchenne in November and with other new results. I am keeping your e-mail address in my address lists so that you will also get the next report and all future ones as soon as they are ready.

If you know people who did not receive this message but who would like to receive my future reports, please tell them to send me their e-mail address. My earlier reports in English, Spanish, and German can be seen on the internet at www.duchennemd.org/links.htm

Any comments and suggestions for improvements you might have about this report would be very welcome. You may also ask questions about research. I will try to answer all your e-mails, but it may take some time. Unfortunately, I cannot answer questions concerning the medical treatment of a Duchenne boy, because I am a biochemist and all I am doing is writing these reports. I am not doing any research myself and I am not a medical doctor so I am not allowed to give any medical advice. I hope that there is a muscular dystrophy association in your country which has the addresses of competent specialists for muscular diseases whom you could consult.
You will see in the new report that research for a therapy of Duchenne dystrophy is progressing. The most advanced genetic technique, exon skipping, has already been tried successfully in Duchenne boys so there is hope that a therapy which at least can slow down the fast muscle wasting of Duchenne to the much slower degradation of Becker dystrophy within the not too distant future. But this and some other therapeutic methods are mutation specific. Thus, you should have a modern genetic analysis being done for your son so that his diagnosis of Duchenne dystrophy is confirmed and the exact mutation in his dystrophin gene is known. The new report gives you all the details about these developments.
This e-mail goes also to many of my colleagues all over the world. I am thanking them here for helping me to write this report and the earlier ones with their information about their work and with their advice for explaining their results for you.

I have written this report on behalf of PPMD, the American Parent Project Muscular Dystrophy. Please visit the PPMD website at www.parentprojectmd.org to see how this dedicated group of people under the leadership of Ms. Patricia Furlong is working to improve the life of your boys and to bring hope that Duchenne muscular dystrophy will not be an incurable disease any more.

I am wishing you all the best for the coming holidays and am with kind regards, sincerely yours,

Guenter Scheuerbrandt, PhD.

in Breitnau in the Black Forest/Germany

e-mail: gscheuerbrandt@t-online.de

Dear Friend:

I am sending this e-mail message to you and all other English speaking families with Duchene boys and to other people who have asked me to send them new Duchene research reports and interviews.

At the end of this year's annual meeting of the American Parent Project in Cincinnati/Ohio, 13 - 16 July, I recorded an interview with Professor Steve Wilton of the University of Western Australia mainly about Exxon skipping, the technique which will be able to change the fast Duchene into the much slower Becker dystrophy within the not too distant future. The original text of the interview was shortened and edited by me and then approved by professor Wilton to be distributed to Duchene families and their care givers.

I am enclosing a PDF file of the interview in English, and you can download it here . If you wish to have the text as Word file, please let me know. Translations into German and Spanish will be available soon. If someone wishes to translate it into his/her own language, she/he may do so under the condition that I receive a copy of the translated text. You may also put the interview on your internet pages if they concern muscular dystrophy.

Any comments you might have about this interview would be very welcome. If you know families who have not received this e-mail but who would like to have all my future research reports, please tell them to send me their e-mail address.

You will receive my next report in about two to three months about the presentations given at the conference in Cincinnati. All my earlier reports and interviews in English, Spanish, and German can be seen on the internet at www.duchenne-research.com

Although I am in Spain during the summer months, you should use my German e-mail address given below if you wish to contact me.

With kind regards,

Dr. Guenter Scheuerbrandt
in Cadaqués/Spain
E-mail: gscheuerbrandt@t-online.de

2 August 2006.

May 2006

Dear EAMDA Friends,

We are very glad to send you an update on the EAMDA activities during the past months and the first announcement of the EAMDA 2006 Annual General Meeting, to be held in Bratislava.

EAMDA Annual General Meeting 2006, Bratislava, 21^st to 24^th September

The Bratislava organising committee presented the tentative programme for the EAMDA annual general meeting 2006 to be held in the near vicinity of Bratislava, September 21- September 24.
Bratislava has an international airport with direct flights from destinations throughout Europe (for information on destinations and cheap flights check (www.skyeurope.com), there is also a direct bus connection with the international airport of Vienna (60km).
The fee for attending the conference, the hotel/guesthouse, including dinners, lunches and breakfasts and the sightseeing tour of Bratislava will be around 150 euros per person. Transfers from the airport will be arranged by the organising committee.

The EAMDA board was very pleased with the proposal of the Bratislava organising committee to focus the conference on the topic of multidisciplinary care for patients with neuromuscular disorders. In addition to this topic there will also be a session on implementing therapy development, which will look into the development of the TREAT NMD programme (application for funding out of the EU 6^th framework programme), the treatment of Pompes disease, therapy development in SMA and the role of patients in speeding up drug development. EAMDA is honoured with the presence of Prof. Dr. V. Straub, (University of Newcastle) and Mrs A. Dillon (Genzyme) who have kindly accepted our invitation to the conference.

Tentative Programme:

Thursday 21^st September 2006
Arrival, Registration, Dinner & Opening of the Conference by the President

Friday 22^nd September 2006
EAMDA Conference & Dinner

Saturday 23^rd September 2006
EAMDA’s Annual General Meeting. Lunch, Sightseeing of Bratislava & Closing Dinner

Sunday 24^th September 2006
Departure of participants

EAMDA activities on therapy and drug development

During the past 6 months EAMDA has been engaged very actively in establishing contacts with the key players in drug development. Therefore EAMDA has become a member of the here under mentioned organisations. All these organisations are involved in the policy making for therapy and drug development.

· Eurordis ( www.eurordis.org )
· EPPOSI ( www.epposi.org )
· European Patient Forum (EPF, www.europeanpatientsforum.org )
· European Forum for Good Clinical Practice (EFGCP, www.efgcp.be )
· European Genetic Alliances Network (EGAN, www.egaweb.org )

November 9, 2005 was the deadline for sending in applications concerning the 4^th call of the 6^th framework program of EU DG Research. The European Neuromuscular Centre (ENMC) together with about 20 other organisations (both from Academia/Science, Patients organisations and Industry) has become one of partners in this project. The ENMC was listed as leader for a work package concerning the “Dissemination of accessible information and integration of patient groups”. Within this work package Peter Streng on behalf of both ENMC and EAMDA will be involved in a number of activities.

The EU will announce the ranking of the applications in the first quarter of 2006. When the proposal receives a high ranking, the TREAT NMD consortium expects an approval by the end of May or in June 2006. When approved contract negations will start. The impact for EAMDA will mainly be focused on the setting up of a European neuromuscular infrastructure and the use of this infrastructure for dissemination of information and knowledge and the possibility of becoming more involved in research and clinical trials in the future.

In the (teleconference) meeting of the EAMDA executive committee on March 1^st, EAMDA decided to support and to participate in the board of a new to form organisation: Myo Medicine Europe.

Myo Medicine Europe will be lead by Peter Streng and will represent neuromuscular patients on drug development topics in Europe. In this Myo Medicine Europe will collaborate with both EAMDA and ENMC and, when feasible, will represent both EAMDA and ENMC. The objective of Myo Medicine Europe is: Stimulating and accelerating the process of therapy and drug development in cooperation with and on behalf of European Patient Organisations for Neuromuscular Disorders. This objective can be achieved by:

· Advocacy by increasing the awareness of NMD with all parties involved in the drug development process and policy making, obtaining the attention and commitment for NMD in the process of drug and policy development.

· Representation of Neuromuscular Patient Organisations, as well as patients with NMD in general, on the European and international level on issues concerning drug development.

· To set up and maintain a European neuromuscular infrastructure for the purpose of scaling up, communication and access to neuromuscular patients and patient groups in Europe.

· To set up and implement projects and activities aimed to stimulate the development of drugs for NMD and to accelerate the drug development process for NMD

During the last months EAMDA has participated in a number of European meetings and conferences. Reports on these conferences and meetings will be made available via the EAMDA website. Some of the topics will be addressed in future EAMDA meetings or publications.

October, 2005, Brussels, EFGCP conference, “How will the European Legislation stimulate Paediatric Research” The minutes of this conference will be available on the EAMDA website.

October, London, EPPOSI, Sixth Workshop on Partnering for Rare Disease Therapy Development “Patients with rare diseases – no longer alone in the world”. The official report of the workshop will be available later this year. An overview of the key outcomes can be found at the EAMDA website.

December 2005, Leuven, Eurogentest meeting, an invitational conference on the progress of the Eurogentest program on public information about genetic testing in Europe.

December 2005, Brussels, EPPOSI annual general meeting.

December 2005, Brussels, Stem cells conference. The conference was an opportunity since it was the first time patients from up to 34 countries constituting the European Research Area were invited to participate with other groups to discuss, at a pan European level, many of the issues and challenges society faces in this area of stem cell research. A report will become available.

January 2006, Basel, EGAN-Roche Workshop, An invitational workshop where diverse aspects of collaboration between patient organisations and industry were discussed. Peter Streng prepared a presentation on the possibilities for patient organisations to be involved in the recruitment of patients for clinical trials.

January 2006, Basel, EGAN – board meeting.

January/February, Brussels, EFGCP annual conference 2006, “Retooling European Medicines Development for Leadership” In this conference a workshop with the title “How can patient organisations help to drive drug development” was chaired by Ysbrand Poortman, Peter Streng served as reporter. The summary of the report is published on the EAMDA website attached to this mail. The full report and the minutes of the conference will be available later this year.

We are looking forward to meeting you all in Bratislava.

Warmest Regards, EAMDA Board

˚ Workshop/ Duchenne – why are the Danes and the Dutch living past 40?

eamda

in collaboration with The Muscular Dystrophy Group of Malta

Organised the Workshop

Duchenne – why are the Danes and the Dutch living past 40?

at Sol Suncrest Hotel, Qawra - MALTA
On Friday 6^th December 2002

Welcome speech by Mr. Denis Azzopardi, Chairman of MDG (Malta)

Mr. Denis Azzopardi, Secretary General of EAMDA and Chairman of the Muscular Dystrophy Group of Malta, welcomed all present. He wished a successful workshop, the first from series of three workshops, which EAMDA is organising in the near future. Mr. Azzopardi introduced Dr. Antoine Vella, the animator of the workshop.

Medical situation in Malta by Dr. Antoine Vella – MDG (Malta)

Dr. Antoine Vella MD.MRCP (UK), Medical Advisor of the Maltese Muscular Dystrophy Group gave his presentation on Ventilatory Support in Duchenne Muscular Dystrophy Clients in Malta. Within the Muscular Dystrophy Group of Malta there are 4 patients with Duchenne MD, 2 with Limb Girdle MD and 1 with Charcot Marie Tooth who are on ventilatory support. Average Age when Duchenne Muscular Dystrophy Clients started on ventilation was 17 years. Reasons for commencing nasal ventilatory support are: Post-chest infection (ventilation started whilst in hospital); Symptomatic hypercapnia (morning headaches and “cloudy” feeling); Dyspnoea and problems with retained secretions

Mortality Data

	Ventilated	Non-ventilated
Passed away	3	7
Average age	21.6yrs	18.4yrs
Passed away at home	100%	50%

As per the above table, reasons for not having ventilation were: 2 because there was no any at the time; 2 because of sudden congestive cardiac failure and 3 because the patient/family was not keen on ventilators. The patient’s problems related to ventilation are: Initial problems until adjustment; Dry mouth / dry eyes / irritation of nasal mucosa.; Bloated ness / flatulence; Difficulty communicating / call for help; Often housebound; Anxiety attacks; Rash; Psychological dependence; Constipation; Problems with secretions and mask induced pressure sores.On the other hand the carer’s problems related to ventilation are: The need of supervision especially nocturnal; Anxiety; Technical fear and the lack of domiciliary support. Problems related to the machine itself are: Failure / unavailability of parts; Power cuts; Ill fitting masks and limited back up machines. Problems related to ventilation in hospital are: The lack of a fully functional multidisciplinary team especially for adult patients; Lack of sleep-lab for nocturnal studies and the lack of a proper unit in the hospital for commencing ventilation or dealing with its problems.

At the end of his presentation, Dr. Antoine Vella asked the following questions:

• Is the ventilators support we are giving at the moment just Palliative treatment?
• Should we ventilate earlier if we wish to affect longevity with a decent quality of life?
• Which is the best route to ventilation?

In his opinion there is need of: Earlier ventilators studies; Team assessment with a view to prepare patients and their family electively for the possible future need of ventilation (patients and their cares must be psychologically prepared for this); Multidisciplinary team set up with home support; Sleep lab facilities; Better ventilator back-up / power packs; Informing patients about power cuts; Specialized unit / staff in new hospital; Data collection and documentation especially quality of life indicators.

Conclusion

“I feel that the results achieved with ventilator support are promising especially because of the improved quality of life reported by the patients. However we need to move on since this is only a start”.

Ms. Alison Formosa B.Sc. (Hons), Physiotherapist from the CDAU of Malta, gave a general picture of the procedures, which are usually taken by the Physiotherapy Department in Malta.

What is physiotherapy & what does it actually involve?

Physiotherapy is defined as the physical treatment or management of a condition. In neuromuscular disorders, it has an especially important role in helping to maintain and enhance, where possible, the child’s present level of function & mobility.

Its main aims are to:

1     Provide a physical assessment
2     Minimize development of contractures
3     Maintain muscle strength
4     Prolong mobility & function

In general the signs & symptoms are the following, denominated by the severity of the course & the particular characteristics of the disorder:

Symmetrical weakness of the proximal muscles- pelvic girdle muscles followed later by generalized progressive weakness in the area of the shoulder girdle & eventually progressing distally.

·        Delay in walking with a waddling gait & lordotic posture.
·        Tightness / Contractures- mostly at the ankles, knees & hips.
·        Difficulty in attaining a standing position from sitting/lying (possible Gower’s sign)
·        Inability to hop & difficulty climbing stairs
·        Frequent falls

The course & prognosis also vary according to disorder and its severity but finally the course results in:

· Progressive loss of function & power occuring as the muscle fibers is gradually replaced by fatty tissue.
· Loss of transfer ability, balance maintenance and ambulation
· Increasing deformity
· Tendency to respiratory infections in later years.

Physiotherapy occurs within the multidisciplinary environment. Contributing to a holistic assessment by the various components of the team, the physiotherapist’s assessment covers:

1. Muscle power

2. Joint range

3. Function

4. Spinal posture

5. Mobility/gait

6. Orthoses

7. Any Current Therapy & exercise

8. Home & school

Physiotherapy

Treatment is based on the results of the assessment, aiming to:

-         Minimize development of contractures
-         Maintain muscle strength
-         Prolong mobility & function

The above is achieved through:

Exercise Therapy, Hydrotherapy, Respiratory Exercises, Postural Care, Stretching, Orthoses & Serial Casting.

Exercise

Regular exercising with or without resistance helps maintain the child’s strength, mobility and balance. This prolongs the ability to use the child’s muscles, which have an increased tendency for atrophy through disuse. The muscles commonly vulnerable in neuromuscular disorders are usually those that control the hips, knees, shoulders & the trunk (except for particular disorders such as facio-scapulo-humeral dystrophy)

Hydrotherapy

There are various therapeutic & physiological effects that occur during warm water immersion & due to the physical properties of the water itself. Besides, most children love water and find it a change from exercising on land. Also the loss of fear of falling, many times enhances cooperation. Furthermore group exercise can be done encouraging social interaction, support and motivation. And this can be done at any stage of the condition.

Benefits of Hydrotherapy:

-Promotion of Muscular Relaxation through bombardment of the sensory nerve endings, as well as the effect

of the temperature itself.

-Increase in ease of joint movement due to the warmth and the buoyancy of the water.

-Increase of muscle power & endurance due to the increase in resistance provided by the water (especially if

floats are used).

-Reduction of gravitational forces. Thus gait training can continue & strengthening exercises can be

continued well after they cannot be continued on land, maintaining balance & muscle tone. The forces may

also be varied according to the percentage of body immersed in water, thus offering a versatile ambient,

suitable to all body shapes and conditions.

-Improvement of Respiratory muscle function due to the hydrostatic pressure exerted on the chest wall and

abdomen during breathing. The water resists inspiration & assists expiration. This can be done in

conjunction with incentive spirometry or breathing exercises.

-Improvement & motivation of patient’s moral & confidence.

Respiratory Therapy

Respiratory problems in neuromuscular disorders are mainly the result of weakening of the respiratory muscles, namely the intercostals & associated muscles. If respiratory function is already severely compromised, the need for assisted ventilation arises. Rehabilitation includes passive chest physiotherapy including postural drainage as well as actual exercises such as DBE’s, FET’s (possibly combined as ACBT’s), incentive spirometry and hydrotherapy.

Postural Care

The child with a neuromuscular disorder is forced by his muscle weakness to assume unusual postures. Even when ambulant but most especially once w/c dependent, care & monitoring of spinal posture, assessment of sitting position, provision of jackets & day splints becomes especially important. Maintaining mobility as far as possible to prevent painful contractures, scoliosis & problems with sleeping & respiration becomes especially predominant at later stages.

Stretching

This is a simple technique used to stretch tight &/or shortened muscle tissues by slowly but firmly moving the joint as far as possible & maintaining the position for about 20 seconds.

The aim is to prevent contractures, tightness & deformities, which would lead to disuse as the child finds more & more difficulty to move that joint. (Knee & hip contractures are not common whilst the child is still ambulant)

The structures most commonly at risk are the Tendo-Achilles, the knees, hip flexors, hip abductors- IlioTibalBand, Shoulder, Elbows & Wrists

Self-stretching can also be taught to the child himself, by positioning the structure in question and allowing gravity & the weight of the limb itself to act as the stretching forces.

Orthotic Management

At one point or another in the course of a neuromuscular disorder, orthotics may be used.

The use of orthoses is:

- Control of deformity through reduction of contractures

- Aid balance & stability

- Promotion standing & mobility thus improving self-esteem

- Maintenance of spinal mobility & prevention of posture deterioration

Types of orthoses include: Night splints (such as AFO’s)- TLSO (Jackets) used to treat pelvic obliquity & spinal posture, KAFO’s- that promote ambulation after loss of ability to walk, DAFO’s/Insoles, Collars.

Serial Casting is a progression of casts that are applied to increase range of motion depending on the mobility status of the patient and the structure/s involved. It aims to:

- Improve / restore ROM & TA length

- Possible improve function - e.g. promote stability in standing or decrease difficulty in walking in the child who is not particularly weak

- Improve confidence & reduce fear of falling

- Facilitate use of other orthotics, night splints or equipment

- Correct deformities. This aim can be used in conjunction with surgery. However, surgery in isolation will stop ambulation. Early & intensive remobilisation after injury & surgery is essential.

In Conclusion

The role of physiotherapy in neuromuscular conditions is to complement the multidisciplinary team approach, by helping to maintain and enhance, where possible, the child’s present level of function & mobility through the use of Exercise Therapy, Hydrotherapy, Respiratory Exercises, Postural Care, Stretching and Orthotic Management.

Thus, physiotherapy can help by adding not only quantity but also quality to the life of the child and family

Reference List

www.muscular-dystrophy.org

www.enmc.org

www.sohp.soton.ac.uk/cardresp/ppp/acbt.ppt

www.pediatrics.wisc.edu

Hyde SA, Scott OM, Goddard CM & Dubowitz V (1982) Prolongation of ambulation in Duchenne muscular dystrophy by appropriate orthoses Physiotherapy 68(4): 105-108 April
Bates A & Hanson N (1996) Aquatic exercise therapy. Philadelphia: WB Saunders.

Situation in Denmark by Henrik Knudsen, person with Duchenne

Upbringing

• Family: Henrik Vestergaard Knudsen (HVK) born 7th of May 1973 in Roskilde where I’m still living. I am the oldest of three brothers where the two oldest of us have got DMD.

• N& K At the age of three in kindergarten, the first signs of DMD started to show - such as problems with stairs etc. At the age of 4 I started using a folding pram to get around when we were on trips. I was diagnosed DMD at that time. It didn’t influence my life that much.

• P.S 7-16. In August 1980 I started in an ordinary folk school. At that time in Denmark it was pretty new that physical disabled children could be integrated in ordinary schools. I had lectures in using a computer, instead of gymnastics that I obviously could not join. With the computer I was able to do my homework on my own. I got my first wheelchair at second grade. The 1st day I showed up with my wheels of wonder, my teacher had arranged a ride for each one of my classmates. A splendid idea as I never got teased for being disabled.

• B & C. As most children this age I was tired of school and on top of that I had a lot of fights with my father. The best solution was to get away for some time. I was in a boarding school for two years and it was at that time I got my first personal helpers. Ending boarding school with a junior college degree. Since then and up till today I have taken several courses among others biology, astronomy and philosophy.

• MFH. I got my own place at the age of 19. A big step, cause I got told at the age of 18 I should expect to wait for at least 5 years. It went fairly all right with the help of my parents. Today they live only a mile away.

How to live with Duchenne in Denmark:

• At the age of 2-4 the boys are diagnosed DMD.
• The parents get informed about “Muskelsvindfonden” (MF), the Danish organisation for neuromuscular diseases. MF primary goals are to improve the living conditions of people with neuromuscular diseases.
• Family courses are offered, questions and answers. How to live with …. NMD
• Special treatment such as physiotherapy is provided. MF had made it possible that all members and other kind off handicap groups could get free physiotherapy. This was after some pressure on the politicians. One of the reasons why was that the chairman at that time Evald Krog had seen to many cases where people had died from lack of physiotherapy.
• C-PAP equipment is off to maintain the lung capacity and to prevent pneumonia.
• Today all children with NMD are integrated in ordinary kindergarten and schools if possible.
• DMD´s are usually unable to walk at the age of 9-13.
• Then they get an electrical wheelchair with individual adjusted seat & steering to prevent scoliosis.
• Summer camps with children suffering from all kinds of NMD are arranged -the parents get off duty.
• When necessary they are rebuilding the family place with all necessary equipment for free.
• Corset and back surgery at the age of 13-19 if they develop scoliosis.
• Bi-PAP (night) 16 & the respirator (full time) age 17-18 are offered if necessary - not told to get one.
• When using respirator you get help around the clock - which is the law. You can’t resist.

Long and active living

MF- Muskelsvindsfondon:

It was founded in 1971. As mentioned earlier, they try to improve the conditions for the members. They offer courses for the family for whom it obviously is a great turn over in their life. They take action if you are not getting what is your legal right. Once a year institute of neuro-muscular deceases connected to MF examine the child to judge if you get the equipment needed and second how far the DMD has developed.
At the age of 8 families are offered to send their child to a summer camp for other children with neuro muscular diseases. It is an opportunity until you reach the age of 17. At the age of 15-35 you are welcome to join the so-called youth group courses. It is an offer that comes twice a year. The subjects can be about social law, how to be a better employer, drama, how to improve your self-confidence and how to get a sex life.

When you reach the age of 27 you can join courses made especially for adults.

• This year the institute of NMD made a new course especially for DMDs over 27 years. The oldest in this group is 42. One of the main things the institute wanted, was to catch up with old DMDs they haven’t seen since they were 18 and find out how their life has formed. Another goal was to help the DMDs to learn and experience from each other what is possible in life. What it means to have a good network and social life. A working party that I am a part of has now been set up to arrange the courses to come.
• The green concert: Besides contribution from the government and other foundations it’s a way the MF can make money without begging. It has been quite a success. They make an open-air concert tour in Denmark in 7 towns based on 500 volunteers. The performers get paid and Tuborg is the main sponsor. It has been around for 20 years. Members who want to assist are welcome - there is always a job for them.
• ”Slappendales”: In 1996 4 guys with NMD thought it could be quite a gimmick if they performed a strip show on stage around the country. The message was to show that the possibilities are there, even in a wheelchair.
• A respirator is essential to us alive.
• To maintain an active life we have our wheelchair with the respirator attached to it.
• Further on we get a special equipped car for a very low price that also is financed without interests. Over the years I have been able to get around almost all over Europe. It would not have been possible without my car.
• An example is the picture where I am on a trip to France.
• Musholm holiday centre. A place for holiday and courses - it was build by MF.
• Social life: as you can see I started racing an ordinary go-cart, further on I got my joystick-steered go-cart.
• Another hobby of mine is hockey. I have participated in tournaments in many countries in Europe i.e. Netherlands.
• When I was younger I enjoyed acting as you can see. It is no longer a hobby of mine.
• A´ka´sku - I can do it!!! It was a project, which was made to encourage young NMDs from 20-27 to get out of the cage and live a full life. Start believing in themselves. During the 2 years it lasted they tried a lot i.e. teambuilding. The biggest success was as you can see on the screen a performance based on Romeo and Juliet. It has been performed many times since then with success.

My future

• I am going to m