MJD Foundation

Young Mens Camp

Young Mens CampOn 2nd December 2009, the MJD Foundation kicked off the first of its Youth Camp series.

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The purpose of the Young Men's Camp was to enable a group of young men to learn more about MJD, and have some fun along the way.  The MJD Foundation wants to gather information about the specific needs of the young men who attend. We gained an understanding of their fears, their hopes, their desires, their need for access to information, services and support. This information will directly impact the MJD Foundation's activities at a strategic level for the future.

This Young Men's Camp had approximately 16 men from Groote Eylandt families who either have MJD, or are at risk of having MJD.  There were also guest speakers who were in attendance including a medical geneticist; doctor; physio/occupational therapist; psychologist. Then there were our two camp leaders Bryan Massey and Johnny Lalara, along with GEMCO volunteers and volunteer Sam Morgan; and Browndog.

Thanks to our sponsors: Coca Cola Foundation; Vincent Aviation; Carers NT; Neil Westbury. 

Follow the adventure on the blog below, or visit our photo gallery.

Annaburroo MapCarers NT Troupie heading outTuesday 1st December

Bryan Massey and Sam Morgan arrived in Darwin from Brisbane to an immediate flurry of activity. They picked up the first Troupie from Carers NT, and headed out to pick up the enormous quantity of groceries for the camp. We underestimated the size of the load, and it became obvious to Bryan that he would have to do two trips to Annaburroo (1.5hrs drive away) in order to get it all there.
I guess 28 men over 5 days will eat a lot of food!

The first of many near disasters occurred when Bryan and Sam arrived with a Troupie full of food needing immediate refridgeration and freezing (given it was 36oc), and Annaburroo had forgotten that they'd told us their walk in fridge/freezer would be repaired in time for the camp. After a series of frantic calls and offers of help from the nearby Bark Hut Inn, Annaburroo were able to free up a Darwin restaurant Icecream freezer and bring it out, so by the time Bryan and Sam got back to Annaburroo with their second load of food, the freezer was there.

By then, Bryan and Sam were exhausted and headed back into Darwin late. The last night text message from Sam to Kathy Massey read "Nan, me and da are safe but we can't say the same for the pig......we hit a pig....bacon anyone!! Love me and da"
Kathy asked Bryan was there any damage done and he said "only to the pig!".

First trip from GrooteFirst trip from GrooteSecond load from GrooteJenny farewelling the guys

Wednesday 2nd December

Well, today's the first official day of camp.  The morning started with Bryan/Sam picking up meat in Darwin and organising the second Troupie (Carers NT have been amazing).  Libby and Gayangwa spent the morning frantically ensuring the first plane load of men got to Angurugu Airport (Groote Eylandt) on time.  After a few name shuffles between the morning and afternoon Vincent flights, they were all set to go.  One down, and just the afternoon flight from Groote to go.

All the mainland mob arrived in Darwin by around lunchtime, and the first Troupie full of eager camp goers left Darwin.  A detour to Terrace Gardens Nursing Home first to visit Warren Lalara. Warren's wife Jenny received a phone-call from the Director of Nursing saying "two truck loads of family have just come to see Warren and when one of my staff members went to find out what was going on, she came back and reported a whole lot of men are there and one has a movie camera and they said they were going camping!"

Then, off to Annaburroo.

The first mob to arrive at Annaburroo went out hunting for Bush Turkey and had a nice BBQ waiting for the second load.  Everyone is very excited about being on the camp, and the vibe is great.  Several positive comments about there being "no women" have been thrown around too!


Posted Messages:

"We send our love and will have your favourite chair all warmed up for you Bryan when you return.  We all think you should go back and pick up that pig and have a nice roast pork meal tomorrow night, forget about the bush turkey!
Love to Sam, we miss you both.
Kathy and the kids"

Annaburroo Billabong

Thursday 3rd December

Today started out with a brilliant talk from medical Geneticist John MacMillan in understanding Machado Joseph Disease and how it is passed on in families.

Plenty of good food, and an enormous breakfast .
They went hunting and came back with pied geese and wallaby which they cooked and ate for entrée with the evening meal.

Sam is suffering i-Pod withdrawl symptoms and it is stinking hot.  Things have been casual and relaxed and there have been good opportunities to talk.


Posted Messages:

"Hey guys, have a good time.  I am 30 and live in Newcastle and suffer from MJD. I can still walk but my legs are getting weak and my balance is also suffering. Have a great time boys. My dad died from MJD and I inherited from him this disease.
Darren White" 


Friday 4th December

Bryan said that there was another great talk this morning by Dr Tim Burt and apparently he had light bulbs to show electrical currents and body models - it went well and the men have all really enjoyed the talks and are communicating and talking really well.  Bryan thinks they have really appreciated learning more and being able to share and that it is well worth it.

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So that we can continue to run these Youth Camps.

Saturday 4th December

Psychologist Damien Howard spoke this morning and the feedback we have received was that it was phenominal as have all of them been.  Bryan said that he and the other men have been helped personally dealing with the death of our young friend in June and others in the family. 

They are all finding the heat quite hard.  All the men have participated in the sessions and asked questions and the entire group has mixed in extremely well. Today they had swimming races, played netball, raced the kayaks and generally had fun. No hunting - they are hunted out!

Jenny brought Warren Lalara down from Darwin today to visit everyone.  So many of these men are his family, and Warren was very moved by seeing so many of his young relatives with MJD.


Posted Messages:

"Hi Guys, Thanks for the blogs and photos - I've looked forward to reading your stories every day! And a huge congratulations to everyone involved; what a fantastic example of community spirit and people helping each other out.
Best wishes, Simone McGrath"