newsletter issue 20 · 2019-08-31 · information on silicone ankle foot orthosis (safo) which she...

Two monthly newsletter - Issue 20, November 2004

MDI News Update Page - 1

EditorialHello again,

Welcome to the November issue of the “MDINews Update”. With another year almostover, we thought it would be appropriate toattach with this issue a copy of our AnnualReport for 2004, which includes reports onthe services provided by MDI anddevelopments over the past year. If youreceive this newsletter by email and wouldlike a copy of our Annual Report, let us knowand we will send you one.

On the “Research” page in this issue (page 2)is a report on a conference in Monaco lastJune, where scientists met to discuss theirwork on transferring the dystrophin gene intothe muscles of boys with Duchenne musculardystrophy, which may interest you.

You may also be interested in a new DVDwhich the Parent Project USA have released,

which contains information from expertsaround the world on the care andmanagement of Duchenne musculardystrophy (see page 3).

On 15th October last, a movie entitled “InsideI’m Dancing” went on general release incinemas nationwide. Some of our memberswere involved in the research and making ofthis movie, which tells the story of twodisabled men’s fight for independence (seepages 4 and 5 for more).

If you like sport, you may find interesting arecent interview which MDI member AndrewNolan had published in a Kildare matchprogrammes last September. Talk aboutmixing with the stars! (more on pages 6 & 7).

One of our members recently sent us in someinformation on Silicone Ankle Foot Orthosis(SAFO) which she asked us to include in ournewsletter, which some members may finduseful. To find out more, see page 9.

This is just a sample of what’s includedwithin. We hope there’ssomething to interesteveryone.

Finally, I would like tothank all our members,colleagues and friends whocontributed to ournewsletter over the lastyear and I look forward toyour continued support andcontributions in 2005.

May I also take thisopportunity of wishing youall a very Happy Christmasand New Year.

Slan,

Hubert McCormackEditor

Muscular Dystrophy Ireland 71/72 North Brunswick Street, Dublin 7.Ph: 01 8721501 / 872 3826 Email: [email protected]. Website: www.mdi.ie

Damien Duff (Republic of Ireland) pictured with MDI Member AndrewNolan from Kildare at a recent Ireland International soccer match in

Landsdown Road, Dublin (more on page 6).



Research NewsTransfer of the

Dystrophin Gene

Third Round Table Conference inMonaco, 19th June 2004

Twenty scientists from six countries met atthis conference to discuss their work ontransferring the dystrophin gene into themuscles of boys with Duchenne musculardystrophy. Guenter Scheuerbrandt PhD haswritten a report on the conference - you mayrecognise his name from a comprehensivereport on all research approaches that Ibrought to attention in the MDI newsletterbefore, and there is a link to this report in theresearch section of the MDI website.

Dr. Scheuerbrandt interviewed fourresearchers involved in gene therapyresearch. Serge Braun and Jon Wolff areinvolved in trials currently taking place inFrance and which will also progress inAmerica in the next few years, looking attransfer of the dystrophin gene with plasmids.Jeffrey Chamberlain and Olivier Danos areinvolved in transfer of the microdystrophingene and they hope to begin clinical trials,also within the next few years.

The interviews are very informative and thereport is aimed at parents of children, oradults with Duchenne muscular dystrophy.

In a final question addressed directly toparents, Jeffrey Chamberlain said:

“The important thing is to have hope, and toknow that targets have been set. It is a slowprogress and it never moves as fast as onewould like it to, including us in thelaboratory. But it is coming along, andlooking back 15 or 20 years, when I firststarted working on muscular dystrophy, itwas very difficult to imagine that there couldbe an effective treatment for this disease.And now, we can imagine that there will bea treatment for this disease. We do notknow exactly what that treatment is going tobe or when it is going to come. But what we

have seen with the animals, it is possible tohave a major impact on this disease. Nowwe just have to struggle to find a way tomake that a reality.”

You can access a copy of the report atwww.uppmd.org in the News section, called“3rd Monaco round table report”. Alternatively,if you do not have internet access, contactme in the MDI office on 01 8721501 or [email protected] and I will send you a copy.

Karen JameisonInformation Officer – MDI

Any Ideas?

• Are you happy with the current formatof this newsletter.

• Are there parts you’d like to change.• Are you happy with the layout, design,

distribution etc.

If you have any suggestions on how thisnewsletter can be improved and/orchanged, let me know.

Remember, this is your newsletter – themembers of MDI. Why not claimownership by recommending ways inwhich it can be improved.

Suggestions, comments, etc can be sentdirectly to me at the MDI office or [email protected]

MDI Opening Hours

We would like to advise our membersand colleagues that our office hours are:

9.00am – 5.00pm, Monday/Friday(closed from 1.00pm-2.00pm for lunch).

Should you wish to contact us outside ofthese hours you can phone 086 2219641



Giving a Face to DMD DVDThe Parent Project USA have released aDVD containing information from expertsaround the world on care and management ofDuchenne muscular dystrophy. There are twodiscs, with the first giving information aboutthe condition and the second dealing morewith the practical aspects of management.

DISC 1Understanding DuchenneIntroductionWhat is DMD?What causes the condition?- Inheritance- Genetics- DiagnosisHow Duchenne Affects the Body- Musculoskeletal- Heart Function- Cognition and Learning

DISC 2Current Options for Care and ManagementCoordination of CareCorticosteroid TherapyMusculoskeletal ManagementPhysical Therapy- Active Exercise- Hydrotherapy- Stretches- Posture in WheelchairsOrthoticsScoliosis and SurgeryRespiratory and Cardiac Care- Respiratory Management- Monitoring and Care of the HeartEarly Learning Strategies

For more information, check the USA ParentProject website at www.parentprojectmd.org.The UK Parent Project also have somecopies, costing £15 sterling (enquire aboutpostage and packing) and can be orderedfrom PPUK, telephone +44 208 281 4333 oremail [email protected]

Note: Make sure when ordering that theDVD is suitable for use on a region 2 DVDplayer or is region free.

Karen JameisonInformation Officer – MDI

Dublin Bus has, since last year, honoureda commitment given to agenciesrepresenting people with disability, to onlypurchase low floor fully accessible buses.

To help publicise this, Dublin Bus hasrecently produced a leaflet that outlinesdetails of bus routes which are nowoperated using fully accessible busses.This leaflet lists all accessible bus routesin Dublin and explains how to use thebusses safely.

To acquire a copy of this leaflet contact:Dublin Bus

59 Upr O’Connell Street, Dublin 1Tel: (01) 873 4222

Email: [email protected]: www.dublinbus.ie

New Cork DriverMDI would like to welcome JimO'Donovan to our organisation. Jim,who is based in Cork, takes up theposition as Bus Driver and will beavailable 20 hours a week to memberswho require transport in the Cork/Kerryregion.If you wish to avail of this service, youcan contact Jim on 086 8207872.



Scenes from the movie

Inside I’m DancingBackground

In June 2003, MDI received a phone call fromTV & Film Producer Catherine Tiernan, whoinformed us that she was working on a movieentitled “Inside I’m Dancing“, which tells thestory of two disabled men’s struggle (Rory &Michael) to leave residential care and live asthey choose.

The character Rory has Duchenne MuscularDystrophy (DMD) in this movie and thereforethe actor who played Rory, James McAvoy,requested that he could spend some time withMDI and some of our members in order toresearch DMD and learn how this conditionaffects individuals living with it. After an initialmeeting with Catherine & James, both spent anumber of weeks meeting MDI members atvarious youth group and social activities tolearn more about DMD. While with MDI,James in particular, spent many hourschatting with member’s about day to dayexperiences and living with this condition. AsJames himself explained, “every little detailwas investigated as it was important for thestory we were trying to tell.” As a person withMD, I must say that, after seeing the film, Ibelieve that James’s research paid off as heplays the part brilliantly. And there was somuch in the movie that I could relate to.

We at MDI would like to thank our memberswho met and spent time with James,Catherine and crew and/or who were involvedin the research/making of “Inside I’mDancing“, which opened nationwide on 15th

October 2004. If you haven’t had the chanceto see it yet, look out for it, and watch out forMDI’s own Steven Valentine, who appears asan extra, in one scene. We would also like toinform members that although both leadcharacters have a disability, their health is nota key issue until the end of the movie whenRory’s breathing difficulties lead to a sadlyfamiliar outcome. Nevertheless, the film is anupbeat and often a funny look at life from adifferent perspective. It covers many of thehuman emotions which we all experience, forexample: fun, fear, frustration, pain, pleasureand passion, which shows that we are allhuman.

Film Inspiration

The original story for“Inside I’m Dancing”was conceived byIrish writer ChristianO’Reilly, inspired byhis own experiencesworking for theCentre forIndependent Living(CIL) in Dublin, wherehe worked closelywith Dermot Walsh,(one of CIL’s foundermembers). Whileworking with Dermot,Christian also metmany MDI members,including MartinNaughton, whosespirit, energy,irreverence and witwas an inspiration forthe project.

When Christian firstpitched the idea ofthe story to theproducers, theyimmediatelyresponded to it –particularly itsuniversal theme oflearning to live in theworld, of appreciatingeach day and oflearning to l ove yourself. It was felt that itcould be a highly original, provocative andmoving film. Christian developed the storyfurther and Jeffrey Caine was subsequentlycommissioned to write the screenplay, whichbecame a powerful story about friendship andliberation.

It is a strong story with universal themes thatany audience can relate to. While disability isthe context for the film, it is not the (only)subject.

Like any really good story it turned into acompelling project. It was made for the samereasons as any other quality film.



Rory played byJames McAvoy

Siobhan played byRomola Garai

Inside I'm Dancing is the story of whathappens when you puttogether two frustrated,ambitious, romantic youngmen with significant physical

disabilities who are determined to try andchange the world. It is a story by turns funnyand poignant, tragic and hopeful. Despite alltheir physical restrictions and socialdisadvantages, despite their unfulfilledambitions, unrequited loves and frustrateddesires, inside, in that private innermostplace where we are all the same, these twomen are dancing. Sharp, irreverent andInspirational - this uplifting film will touch thehearts of an international audience.

Michael's storyMichael Connolly isbored. Frustrated bythose around him he'stired of playing by pettyrules and is immune topatronising smiles. Attwenty-four, he's a manin the prime of his life,but the CarrigmoreHome for the Disabled is not exactly the placeto be. He knows that he's got to break out; allhe needs is a little help. When Rory O'Shealands in the room next door, Michael's prayersare answered. Michael has cerebral palsy andhis speech is difficult to understand, but Rorygets every word. With an interpreter by hisside, Michael's fully loaded and ready foraction.

Rory's storyRory O'SheaI is theman with the plan andthere's no messingaround with him. He'sthe one who makes therules. His sharp tonguecan get him intotrouble but he doesn'tcare about theconsequences. Roryhas Duchenne muscular dystrophy andrefuses to let this condition hold him back.

He wants to live life twice as large as anybodyelse. Love him or hate him, there's noescaping his overpowering charm. Rory doesthe quick talking while his comrade Michaeldoes the quick thinking. As a duo they'redangerous.

Siobhan's storySiobhan's not a girl tobe crossed, but underthat tough facade is abeautiful heart. Alwaysin control, you are sureto know where theboundaries lie. At firstnot sure about Roryand Michael, she fastbecomes a full-time fixture in their lives,introducing them to new emotions andexperiences. She may take no nonsense, butSiobhan's tender persona helps to guidethem both to freedom.

Michael played byStenen Robertson

Founder Members of Center for Independent Living (CIL)Pictured above at the premier of “Inside I’m Dancing”on 11th October are (L-R): Hubert McCormack (CIL & MDI),

Liam O’Maonlai (Hot House Flowers), Dermot Walsh (CIL), Catherine Hickey (former Director MDI), Michael McCabe (CIL),Martin Naughton (CIL & MDI), Peter Moore (CIL), Ursula Hagerty (CIL & MDI) and Declan O’Keeffe (CIL)



An Interview with AndyThe interview featured below was conducted bythe Kildare County Football Club, on MDI memberAndrew Nolan (21) from Newbridge, Co. Kildare,and was subsequently published in one of theirmatch programmes last September. EamonNolan, (Andrew’s Dad) sent us in the transcriptrecently, along with some photographs, which wethought you might find interesting.

Q. What are you up to at the moment?A. I am on a two year self development coursewith the NTDI in Kildare.

Q. What are your main interests in life?A. If the word sport is in there somewhere, Gaelic,Horseracing but especially Soccer.

Q. What or who are your favourite teams?A.. There are many answers to that question, but Icategorise them according to sport andgeographic location.

Kildare County FC.I live in Newbridge and it is brilliant to have a localteam that I can really relate to.SarsfieldsAgain its lovely to have a local team.Kildare GaelicUp the Lilies – it’s a tribal thing I think.Glasgow CelticThey are not Scottish, they are Irish!! I have somevery close and dear friends that are Celticfanatics.Man UtdYeah I know you won’t like this but I am a true redRepublic of IrelandI never miss a home game and have beenattending Irish matches since I was 6 years old,that’s around 15 years- so that’s about 1989. Ihave travelled to some away games but travellingis not easy for me.

Q. Have you any favourite match or matches?A. Now that’s a question, how many pages have Igot in this programme. Seriously, I have been veryprivileged to have witnessed some really supergames and events over a relatively short period.

Q. Could you tell us about them?A. I will try, but please remember these are allspecial and as such not in this order:Man UtdMan UTD VS Spurs 1999 – this was the year ManUtd won the Treble and they secured the Leaguewith a 2-1 win over Spurs in Old Trafford. – I wasthere, what a day!SarsfieldsThe year they won the County final and went on toplay the Na Fianna in the 6 subs saga, that was agreat time for the club and how close they cameto Leinster honours.Kildare GaelicKildare Vs Meath Leinster Final 1998 – Although Icould not see the last 10 minutes as the crowdstood up and as such as we are situated at theback of the Cusack stand, I had to apply the earphones and listen to the end on the radio. It wasstill worth it because it was such a momentousoccasion.Glasgow CelticOh there are a many here but three thatparticularly stand outThe 4-3 victory over Juventus in the ChampionsLeague. What a game, what a night and what anatmosphere. I also managed to get into the BoardRoom after that game and met the man himselfMartin O’Neill, a nicer person you couldn’t meetThe last new years Old Firm holiday fixtureagainst the Gers – 3-0 oh that was so sweet. Itwasn’t just the winning it was the way in which itwas won. Plus, on the day before the game I metGod (Heinrik Larsson)The Heinrik Larsson farewell- I have neverwitnessed so much emotion at any football gameas I did that night. The game ended at 9.15 andwe were still there in full voice in a packedstadium t 11.30. – Powerful stuff. Hail HailRepublic of IrelandThat historic victory over Holland in LansdowneRoad. What made this event extra special was thefact that my 18th Birthday party was on that night.And after a day where we defeated the mightyDutch and I met all the golden oldies in theBerkeley Court Hotel after the game. People like –Giles, Dunphy (he’s actually quite nice), DenisIrwin, Andy Townsend, John Aldridge, RayHoughton, and Billy McNeill (Celtic) to mention afew.

“The Two Andys!” – Andy Reid & Andrew Nolan picturedafter a recent match in Landsdown Road, Dublin



The real highlight was that unknown to me afriend of the family, Stef Cleary, brought NiallQuinn down to my party that night where hepresented me with a signed Ireland jersey fromthe game that day. This Jersey hangs proudly onmy bedroom wall.

Niall Quinn (Sunderland)Well that night led to some memorable trips toSunderland – especially the night of Niall's specialtestimonial. What a great event that was. ThanksNiall for everything.

Kildare County FCI have been following County for 2 years now andstrangely enough the most memorable game hereI wasn’t even at it. It was the night against Bohs inthe FAI cup. My 21st was on the next night and Ihad to go to the airport with my Da to collect allmy Celtic friends that were travelling over for myparty. However, I managed to listen to the gameby phone text – you should try it sometime.

Well-done County I won’t be missing the next one.

Horse RacingI have been lucky enough to have had a share intwo racehorses, each of which ran in Listowel. Ihad two super weekends with all my footballbuddies both home and abroad, who also hadshares, and joined us for the weekends inListowel. Unfortunately both horses managed tofinish in 4th place, a position I hope is notsynonomous with me because Kildare Countypresently are 4th, please don’t blame me! Welldone Emlagher and Landira.

Q. If possible could you pick one favouritefrom the above?A. Yes, but its not easy. I thought the victory overHolland and Niall Quinn coming to my party couldnever be surpassed – how wrong I was.

On the night of my 21st after Kildare County hadgiven me the best present I could ever have got(1-0 over Bohs), Barry O’Connor turned up at myparty and presented me with KILDARE Countyjersey that had been signed by the team in thedressing room on the previous night in the homeof Irish football (Dalymount Park). Then to cap itoff the Board of Directors of Kildare Countypresented me with a specially commissionedpiece of crystal. That is No 1 in my book!

Q. What do you hope for in the future?A. That’s easy:Kildare County FC success and Premiershipfootball in NewbridgeCeltic to progress in Europe and keep the Huns atbayMan Utd to knock Arsenal off their perch (whichthey did recently)Sarsfields to win the County ChampionshipKildare to win the All IrelandIt would be easier to win the lotto, me thinks!!

Q. Anything else you would like to add?A. I would just like to thank all the people that Ihave been lucky enough to have met throughsport:Kildare County Supporters Club, Kildare CountyTeam, Niall Quinn, Frank, Tommy and all theCeltic Boys (and Claire!), Michael Casey, JimmyDowling, Pat O Hanlon and PJ Carey. And ohyeah, my Da – without him none of this wouldhave happened!

Come on County!!

Niall Quinn & Andrew after another match in Dublin!

Talk about hanging around with the Celebs!This time Andrew meets Barry O’Connor (Kildare) whopresents him with a signed Kildare County Jersey at his

21st Birthday party in August 2004.

FOR SALE99 Fiat Scudo Combi 65,000 miles.

Wheelchair Accessible �5,000.Phone: Peadar 086 1664121



News Nationwide Members Christmas Parties

The following are the dates and venues for theChristmas Parties being organised for membersnationwide. Members will be notified in duecourse. If you have not received notification priorto your local party, contact your Family SupportWorker.Branch Date Venue

Dublin 05/12/04 Red Cow Inn, NaasRoad, Dublin

North West 05/12/04 Mount Errigal Hotel,Letterkenny

South East 08/12/04 Springhill Court Hotel,Kilkenny

Galway 14/12/04 Christmas shoppingtrip to Athlone

North East 12/12/04 GAA, Carickmacross,Monaghan

Cork 19/12/04 Blarney Park Hotel,Cork.

Kerry Currently being organised.Members will be notified.

“A Good Laugh for MDI”

Pictured above are:Joel Lane, 4th Class Togher Boys School, with

School Principal Mr. Jack Duckan.

Joel has recently compiled a “Togher BoysSchool Joke Book” by asking every boy inthe school to contribute their favourite joke.Then, with the help of his parents and teachershe printed a Joke Book. Joel’s brother Calebaged 12 has the condition Duchenne MuscularDystrophy, and Joel with the agreement of Mr.Durkan agreed to donate all the monies raisedto the Cork Branch of Muscular Dystrophy.Each book was sold for �2.00, and to date Joelhas raised �320.00. This was a great efforton Joel's part and he wishes to thank all theboys and teachers for their support, as do theCork Branch of MDI. Well done to allconcerned, and thanks for your support.

Adult Break in KilcaunPictured below are members of the South East

Branch who spent a week in Kilcaun,Clarenbridge, Co. Galway in September 2004.From all accounts a great time was had by all.



A New Pair of Feet!One of our members recently sent us in someinformation on Silicone Ankle Foot Orthosis(SAFO) which she highly recommended andrequested that we would include this informationin our next newsletter. SAFOs come highlyrecommended by people who use them. SusanOldfield is one such person who said:

“After being diagnosed with CMT (Charcot MarieTooth) I had become used to the slow butcontinual deterioration in the weakening of mymuscles. By Jan 2001 I was tripping over both myfeet, on average 6 times a day, and having visitedmy doctor, was referred to Dorset Orthopaedic forthe Silicone Ankle Foot Orthosis.It is hard to put into words the delight that I haveexperienced since taking delivery of the SAFOs. Ihave not tripped over my feet once since and mywalking is back to a ‘normal’ gait and speed. TheSAFOs are easy to wear, warm, flexible andgenerally comfortable. I remember my son askingme last year what I wanted for Christmas and Ireplied “a new pair of feet” and now, in effect Ihave them.”

The future looks exciting for this dynamic andflexible orthosis in the treatment of what iscommonly known as ‘Drop Foot’. The SAFOprimarily designed to replace the traditional morerigid style of AFOs is now being used extensivelyin the treatment of all conditions that result insome form of, or complete loss of active range ofmovement at the foot/ankle complex.

There has been particular success in thetreatment of those with peripheral neuropathiesincluding; CMT (Charcot Marie Tooth) andGuillain-Barre Syndrome, along with Sciatic andPopliteal nerve injuries and incomplete spinalinjuries.

Each SAFO is individually made from a plastercast mould of the individual’s foot to ensure anexcellent fit. The Orthosis can be manufactured ina single colour or a full colour match of theleg/foot, and the choice of one of three strapfastening.

The SAFO works due to a reinforcement, whichruns down the anterior aspect of the leg and ontothe dorsum of the foot. This supports the footduring swing phase to prevent the toes fromdropping or catching and ensures the patientachieves a good heel strike. It then acts as adampener from heel strike to foot flat to preventthe foot from slapping down uncontrollably.

The feedback from people who were fitted withSAFOs indicates they have better balance, moreconfidence and the ability to walk longer distanceswithout tiring.

For more information contact:Gillian Walker, The Court Clinic, 8 The Cottages,Cornelscourt, Dublin 18. Tel: (01) 2897321

Adult Break in KillarneyAt the end of September a group of young adultmembers travelled to Killarney for a weekendaway. Members from all over the country arrivedat the Holiday Inn Hotel on the Thursday wherewe stayed for the weekend. For the first night weall settled for a few quiet drinks in the hotel butthis was not to be the theme for the weekend!!!!

The next day, following a days shopping inKillarney we all headed off to the pub where therewas a “ballad band” playing. For those stilllooking for a bit more lively music there was anightclub nearby, where a bit more drinking anddancing was done.

Some sore heads made it down to breakfast thenext day. Then it was a trip into Tralee for somewhile others relaxed and recovered in the hotel.For the final night everyone went to TheGleneagle Hotel for dinner and a concert.

By all accounts everyone had a great time eventhough we were all looking forward to getting backhome to our own beds by the end of theweekend!!

Karen LeonardYouth Worker – Dublin

Childrens individually customised SAFOs



Muscular Dystrophy Ireland2004 Christmas Card Order Form

Please send me (state how many) packs of MDI Christmas cards.Each pack contains 6 X 2 assorted cards (as above)

Packs cost �7.00 each plus 50c extra per pack (post & packaging).

(Please use BLOCK CAPITALS)Name

Address

Tel: E-mail:

I enclose � payment for same

Payment should be made by cheque or money order and made payable to:

Muscular Dystrophy Ireland

This order form should be returned along with your payment to:Steven Valentine

Muscular Dystrophy Ireland71-72 North Brunswick Street

Dublin 7Tel: (01) 872 1501 Fax: (01) 872 4482

E-mail: [email protected]

Orders received after 30th November cannot be guaranteed.Please allow 7 days for delivery.

newsletter issue 20 · 2019-08-31 · information on silicone ankle foot orthosis (safo) which she...

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