ATTENTION: RLS Australia Support Group Is To Become Reality!

[sardsy75]

Well folks, I’m off to Sydney next month …

Why???

The email below will give you a bit of an idea:

From: nicc@mail.com
To: "Nadia Russell"
Date: Fri, 17 Sep 2004 08:53:36 +0800
Subject: From Beverley Re: Sydney Symposium
Dear Nadia,

We have been fortunate to have Glaxo (GlaxoSmithKline) help us in forming an RLS Committee. They have agreed to send representatives from each state to Sydney so that we can have a face to face meeting.
We are planning to meet at the "Sleepless in Sydney" Symposium, Friday 15th October, at Star City where 3 prominent doctors, Dr John Swieca, Sleep Physician, Dr Brendan Yee Sleep Physician and Researcher, and Dr Peter Silburn, Neurologist, will give speeches before a dinner at the Astral Restaurant, Star City.
The next day, Saturday 16th, we will meet together to discuss our needs and plan for the future as an RLS Committee, hopefully formalising our committment and taking on roles.
I have talked to the Sleep Disorders Australia Presidents in each state to encourage them to help me find appropriate people for our committee.
We are well supplied for the ea stern states but negative for Tassie, SA, WA and NT. My feeling is that even if we only have partial representation, we can make a start and time and a little more digging will find others.
Beverley

Considering I’m the type of person who likes to hide quietly in the background of big projects like this, my gut instincts were screaming at me to grab this opportunity with both hands and hang on for the ride!

I have knowledge of all three doctors who are speaking:

1. Dr John Swieca is a Sleep Physician based in Melbourne; is the healthcare provider for one of my fellow Aussie RLS sufferers; and is also listed on the RLS Foundations Healthcare Provider Listing;

2. Dr Brendan Yee is a Sleep Physician and Researcher based in Sydney. Some of you who have been part of this discussion group since the start may remember me starting a thread, under this topic, regarding a trial of a new drug to treat RLS. Dr Yee was/is the head researcher for this trial. I did investigate the possibility of being a part of this trial, but at that stage was way outta control with my legs and would not have been a very happy camper at all if i'd come up with the placebo!

3. Dr Peter Silburn is a Neurologist based in Brisbane. He is also listed on the RLS Foundations Healthcare Provider Listing and is the very next Neuro on my "list" to visit (which BTW I have rescheduled for November 22nd). A few years ago my maternal Grandmother had brain surgery for her parkinsons, and Dr Silburn was the surgeon; and for those of you who followed my thread under this topic entitled "A Wonderful Gift" regarding my mum's best friend, who after passing from Parkinson's MSA (Multiple System Atrophy), donated her brain to science, Dr Silburn is a part of that research team.

My official letter of invitation then arrived:

Mrs Beverley Yakich
Coordinator, RLS Australia
Restless Legs Syndrome Australia
PO Box 1653
Warriewood Square
NSW 2102

http://www.rls.org.au

Date: 17th September

Dear RLS Supporter

As a fellow RLS sufferer you will rejoice in the fact that after many years in the dark, Restless Legs Syndrome is finally in the spotlight! RLS is emerging from its ‘curiosity’ status to recognition as a genuine neurological movement disorder, which not only causes the sufferer physical distress, but for many, sleep deprivation and consequent loss of quality of life.

Over the 12 years I have been Coordinator for RLS within the organization, Sleep Disorders Australia, we have searched for funding support to carry out awareness campaigns, but no one was interested. With the advance of research on RLS in the US and Europe, surveys have now revealed the surprisingly large number of people who are afflicted with this disorder. Fortunately, this information has now encouraged some of the drug companies to support further research studies and assist patient support groups.

Now it is possible for ‘RLS Australia’ to become a comprehensive Patient Support Group. Courtesy of a grant from GlaxoSmithKline, we have the funding to fly a group of prospective committee members to Sydney for a meeting. This meeting will take place on:
Friday evening 7:00, 15th October, 2004, and 9:00 to 4:00 on Saturday, 16thOctober.

I am looking for people to represent each state so that we have an official contact person for local enquiries. Although this will not be a high profile, time-consuming role, the volunteer will need to be a person who has a desire to help others by making a commitment.

Volunteer profile ...

1. You will need to be someone who suffers from RLS. It may be that you now have your symptoms medically controlled (like myself), and have energy to contribute to helping others.
2. You will need a little spare time ... high powered business tycoons need not apply!
3. You will need a little computer knowledge, the capacity to send and forward an email will be fine.
4. You need not be an authority on RLS. We have lots of information available and will come together to support each other. We are in the process of forming a medical advisory panel of doctors who will be willing to assist us, occasionally.

I am applying for further grants to cover costs for phone and mail, so you would not need to use your own funds. I anticipate further funding for meetings so that we will have opportunities to meet face to face.

Please send your answer to this email address: ………. I will send out details of the first meeting when I receive your response.

Yours sincerely

Beverley Yakich
Coordinator, RLS Australia.

So….I’m off to Sydney as a prospective committee member for the first Australian RLS Patient Support Group. Am I excited??? You betcha!!!

I’m already planning the notes I’ll be taking with me; including suggestions on how to improve the new website.

I have also been having a chinwag or two with Jumpy over the possibility of taking some of the data collected from the questionnaires with me. That’s still a huge work in progress at this time, but hopefully we can work something out.

How did this come about???

I was given Beverley’s email address by a fellow Aussie RLSer when I put out my general “SOS We Need Your Help” call for questionnaire participants; starting with an email to Beverley from myself, followed by a phone call from a very excited Beverley the very next day; and it’s pretty much snowballed from there!!!

I’m a little apprehensive about the trip having had nothing but trouble with my legs on my two recent trips to Brisbane; but we’ll see how I go. Hehehe, it could be a great way to illustrate a point to the doctors anyway! I fly down on Thursday October 14th and return on Tuesday October 19th.

I will keep you all posted on how this turns out!

[jan3213]

Nadia, it's Jan

This is what I've been hoping for--maybe RLS will be taken out of the "orphan disease" status into a disorder research scientists deem worthy of actually working on! I think you'll be a wonderful representataive! It should make each and every one of us feel good to think we were all a small part of what is happening! Thanks for posting the great news!

Jan

[Heronak]

Nadia, this is exciting! They'll be lucky to have your sensible expertise a energy. I look forward to hearing more as things develop,

Heron

PS Hmmm, one rep from each "state"...don't suppose they need someone from Alaska?!

[sardsy75]

Finally... I have received a copy of the agenda for the Dinner/Meeting; and from the looks of things, it could be one heckuva interesting night ... paticularly during the "Questions for the Panel" section


Title: Recent Advances in the Treatment of Restless Legs Syndrome

Date: Friday 15th October 2004

Program:

7.00pm Welcome - Dr John Swieca - Respiratory/Sleep Physician

7.05pm The clinical significance of RLS: prevalence, morbidity and quality of life - Dr Peter Silburn - Neurologist

7.15pm An update on the diagnosis and assessment of RLS: new developments, the problem of mimics and the role of laboratory studies - Dr Brendan Yee - Respiratory/Sleep Physician

7.25pm Recent advances in the treatment of RLS: the development of the evidence basis for dopaminergic treatment and an expert based algorithm for overall RLS treatment. - Dr John Swieca - Respiratory/Sleep Physician

7.35pm Questions for the Panel

7.50pm Concluding remarks

8.00pm Dinner

10.30pm Evening Concludes

It will be interesting to hear what the "clinical significance" has been based upon ... maybe a few of our own "quality of life" statements might come in handy here??? (Just a thought!)

The diagnosis and assessment of RLS has always been a niggling question at the back of my mind during my readings and research ... particularly as it now appears that a large number of people (mainly children) being diagnosed with ADHD, may actually have RLS.

RLS Mimics ... 'nuff said really ... they're a real problem, which is why a formal diagnosis and assessment policy needs to be settled upon.

The expert based algorithm for overall RLS treatment I am expecting to be the algorithm which we have already discussed within this group.


On a slighly less business-orientated topic, this will be only the second time I have ever been to Sydney (apart from the numerous times I've seen the inside of it's airport as part of a stopover!), and will be making the most of my stay. I have tickets booked to see "The Lion King" production; I was nearly taking myself as a "date", but my sister's boyfriend, who lives in Sydney, wanted to see it as well, so my sister has graciously agreed to allow us to go together The Queen/Ben Elton production " We Will Rock You" is also on in Sydney while i'm there, and i'm undecided as to whether I should go all out an treat myself and go and see it as well ... decisions, decisions My sister lives in Canberra (about 2-3hrs drive from Sydney) and will be coming in to Sydney for the Sunday & Monday so we can catch up and do some shopping (as you do!) and the usual sightseeing (hey, i'm technically a tourist!).

Hopefully, my legs will behave (touch wood!). My last two trips away, to Brisbane, have not ended well and have had me arriving back home propped up with a walking stick However, if they do play up, bugger 'em, i'm still going to enjoy myself

[sardsy75]

PS Hmmm, one rep from each "state"...don't suppose they need someone from Alaska?!

It seems to me that Alaska is very much like our own Tasmania???

Part of the country, yet so often left out (even on some maps )

I can't see why I can't request that we make Alaska an "honorary" State of Australia

[jan3213]

Nadia, it's Jan

I'm sitting here thinking, how in the world can you sneak some of our Quality of Life statements into Dr. Silburn's talk---of course everything I come up with is humerous and this is, of course, serious, so I'm not going to go there! I'm so proud that you are going to be part of this, Nadia!! How exciting for you. And how great for all of us. I wish I could be a fly on the wall! And, BY ALL MEANS, you should make the most of your visit to Sydney! Attend both of those events (just a small suggestion from me, of course), but how many times do you get a chance to do something like this? See, I can rationalize anything!! LOL And, I'm so glad you are going to see your sister and GO SHOPPING!!!! I hope your legs don't give you too much trouble!!! Enjoy!!!----And, take notes (an expression we use around when we don't get to "tag along"). I'm anxious to hear all about it!!

Jan

[Heronak]

I like the sounds of that! I've never seen Sydney...

[sardsy75]

Off to the "big smoke" today ... and i'm excited!

I've got a notebook full of ideas and suggestions which will be carefully guarded until I know that I'm in the right surroundings with the right support; as well as a lil ammunition from Jumpy & Gloria in the way of some preliminary results from the very first questionnaire (which will also be carefully guarded). I'll be relying on my gut instinct a fair bit on this one so here's hoping it's a good instinct.

Not sure how the proceedings are planned for tomorrow nite (Friday.

I should be able to get access to a computer somewhere to check back in here as well as my emails, if not, i'll be back online next Tuesday nite (Aussie time). Speaking of Aussie time, if anyone ever wonders what time it is here in relation to where they are, check this link out: http://www.timeanddate.com/worldclock/personal.html I've found it pretty handy.

Must away and finish packing my bag and ensuring my notes are in order.

Take care y'all!

(((((HUGS)))))

[jumpyowl]

So you probably will not read this note.

I was getting more stuff together for you but it will probably have to wait for Sidney.

Good luck and slay them all (meant in a constructive sense).

[sardsy75]

Well, I'm back and in relatively one piece ... long story (although I must commend the wonderful "wheelchair chauffers" I had the pleasure of getting to know, albeit briefly, at both Brisbane and Rockvegas airports on my return )

I am working on and will post a "week in review" either tonight or tomorrow depending on how my days pan out ... a little busy with tax time at the mo'.

(((((HUGS))))) to all!

[sardsy75]

Yes, I know, I’ve been very slack, but heck what can I say? It’s been one of those months and the combination of the trip to Sydney and hot, humid, stormy weather has made for some pretty disgusting RLS attacks.

On Friday October 15, I attended the “Recent Advances in the Treatment of Restless Legs Syndrome” Meeting/Dinner at Star City Hotel/Casino in Sydney, Australia. The meeting was a part of the 17th Annual Scientific Meeting of Australasian Sleep Association and Australasian Sleep Technologists Association “Sleepless In Sydney Symposium”.

I was a little nervous to say the least. Let loose in a big city by myself! I knew that there would be a couple of other people there with whom I had been conversing with via email and internet support groups; but I had no idea what they looked like. As I stepped out of the lift and wandered towards the restaurant, I heard “Are you looking for us?” It was Richard, one of the gentlemen I’ve been in contact with since last year both via email and the rlssupport group. Richard is also the one responsible for giving me the heads-up about being on nearly double the recommended dose of Sinemet. I was so glad to finally put a face to the name and to be able to thank him personally for helping me out during that rough spot. He introduced me to the people standing with him, and they were all fellow RLSer’s. The last person I was introduced to was Beverley; coordinator of RLS Australia; and the person responsible for getting us all together as the prospective members of the RLS Australia Committee.

As we got to know each other during the pre-dinner drinks, Beverley managed to introduce us to two of the speakers for the meeting: Prof. Peter Silburn and Dr John Swieca. I was most interested in Prof. Silburn as I have a “date” with him in two weeks time. He seems very nice and “on the ball” so to speak.

There were three key speakers at the meeting:

1. Prof. Peter Silburn – Neurologist – “The clinical significance of RLS: Prevalence, Morbidity and Quality of Life”
2. Dr Brendan Yee – Respiratory/Sleep Physician – “An update on the diagnosis and assessment of RLS: new developments, the problem of mimics and the role of laboratory studies”
3. Dr John Swieca – Respiratory/Sleep Physician – “Recent advances in the treatment of RLS: the development of the evidence basis for dopaminergic treatment and an expert based algorithm for overall RLS treatment”

I didn’t really learn anything that I didn’t already know and have discussed here on the boards, but it was still interesting to hear them speak. I am looking forward to my “date” with Prof Silburn as his presentation was very enthusiastic and he came across as having done a lot of research into this disorder and is not about to let it slide back into oblivion. I'm hoping that he can put the work of my other two Neuro’s into a neat package for me lol, wouldn't that be a treat! I think I’ll be one of his more challenging patients!

The big news of the meeting though was the announcement that GlaxoSmithKline (GSK) had received approval to launch Ropinirole onto the Australian market next year as the very first drug for the specific treatment of RLS. Big news indeed! Known as “Requip®” to most of you, it will be called “Repreve®” here in Australia.

The next big hurdle will be getting “Repreve®” listed on the Australian Pharmaceutical Benefits Scheme which is a nationally subsidised scheme which provides essential medications to all Australians at a reasonable price. However, of the 3000 or more trade name medications available on the market, approximately only one fifth of them are listed on the PBS. To be listed on the PBS the drug must be used to treat a disease/disorder which affects a large percentage of the population e.g. diabetes, asthma, etc. Unfortunately, RLS only affects a small percentage of our population, but that doesn’t mean that we won’t be fighting tooth and nail to get it listed.

To date, our GP’s have been prescribing us medications “off label” for RLS, yet we are still getting them at PBS price of AUD$23.70. If the PBS was not in existence our medical costs would soar:

Neurontin® 300mg (100 Capsules): Full Cost - AUD$100.40
Cabaser® 4mg (30 tablets): Full Cost - AUD$111.70
Cabaser® 2mg (30 tablets): Full Cost - AUD$92.60
Cabaser® 1mg (30 tablets): Full Cost - AUD$70.29
Sinemet® 250/25 (100 tablets): Full Cost - AUD$49.98

I know that there are a number of Australian RLS patients who are now importing Pramipexole (Mirapex®) from overseas at enormous costs, yet the manufacturer of this drug, Boehringer Ingelheim Pty Ltd have stated that it is not likely that it will be made available in Australia in the foreseeable future. To import Mirapex® 250mcg costs AUD$137.00. Anything over that i.e. 500mcg – 1500mcg costs AUD$247.00. Not exactly cheap, but if it’s the only way to get relief, you gotta do what you gotta do sometimes.

The rest of the night was spent getting to know my fellow RLSer’s and discussing the basic groundwork we would need to cover the next day.

The inaugural meeting of the RLS Australia Committee on Saturday October 16 was quite lively. I was the youngest (surprise, surprise) and also the most severely afflicted (no surprise there!). The meeting opened with a presentation by each member on our history with RLS; some of our experiences and the variety of treatments we’d each undergone.

We also discussed the feasibility of establishing a branch of RLS Australia in each State. It was decided that this would need further planning and would be formalized at the next meeting. In the meantime, each member would unofficially represent their state.

We spent time looking at the new and improved RLS Australia website – www.rls.org.au – and discussed the contents and look of the page and decided on how to improve it. I have recently finished working on the “Links” section and submitted my ideas so that’s a start. I’m now working on the medications section which will give more information about all the different drugs available in Australia. Although the chemical/scientific names can be the same worldwide, the trade names often differ greatly. I’m about a third of the way through this.

Most of the meeting was spent discussing how the committee would work in general; how we could utilise the funding from GSK; and how to raise awareness of RLS in general, be it through the media or politicians, etc, etc. All in all it was a pretty productive day.

So, we’ve got a lot on our plate, for such a small group of volunteers. BUT, I know we will make things happen as we’re not about sitting back and waiting for things to happen, we want to make them happen ourselves!

[jumpyowl]

That is it, gal! I have been waiting to hear your success story. I know you would do well and some.

I wish I would also be full of good news. We have taken the trip 2500 miles with two sick ladies. who became sicker as the days went by. My son and I took turns driving, car did not break down. Leg room was bad in the back as my daughter had to lie down in the front passenger seat.

The granddaughter was cute. My other son flew down to Chicago at the very end so we met him also. By that time my daughter was at her rope's end.

Tried to nurse her during the nights. She was sure she was dying. Some metabolic problems with a panic attack.... Poorly controlled medication, etc. We made it back yesterday. In the meanwhile, I was trying to prepare for two talks.

Now it looks very questionable that I could go to Long Beach, if she has another attack like that on Thursday. Airfare, hotel paid for.

I am still preparing as if I could go, although I am having the worst episode of RLS in my life: Mirapex quit on me, possibly due to stress, I had to go back on Topamax which initially helped!

This morning at 1:00 am my powerpoint quit. Got it fixed and will polish the lecture tonite. Then start on the other one for Puerto Rico.

If worse comes to worse I hope I can find a volunteer who will present the paper. Any takers? It would not be unsurmountable, as the slides are almost self-explanatory.

Iin that case the ticket and hotel reservation is lost but at least I tried...., tried very hard. And I am still trying...!

Wish me luck and those so inclined, please pray.

Not so vivacious but still jumpy OWL!

[sardsy75]

If worse comes to worse I hope I can find a volunteer who will present the paper. Any takers? It would not be unsurmountable, as the slides are almost self-explanatory.

Iin that case the ticket and hotel reservation is lost but at least I tried...., tried very hard. And I am still trying...!

Wish me luck and those so inclined, please pray.

Not so vivacious but still jumpy OWL!

Jumpy!!

My dear friend, if I could find a way to get there and do the presentation I would ... heck i'm sure the travel consultants sitting just 10 feet away from me could have it organised this afternoon.

However, I know that there are a number of our members going to the National Meeting ... surely there is someone amongst us who is willing to help Jumpy out if it turns out he is unable
to make it.

We have spent a LOT of time and effort on this project ... too much to let a good opportunity go to waste.

Is there someone out there who is going to the meeting who can assist Jumpy if the need arises??? One of our "family" needs our help!!!