 |
| Author | Post |
|---|
Grace
Advocate
| Joined: | Tue Sep 14th, 2004 |
| Location: | Australia |
| Posts: | 388 |
| Status: |
Offline
|
|
Posted: Mon Jun 25th, 2007 22:32 |
|
Thanks regarding the Noir,I will continue the 'fight'
Far more exciting.I went to the local chemist today and asked about Olmetec,and if it was in yet.They rang and order it while I was there. They told me that they would have it in by tomorrow morning-27/6.They had already put an order in 3 weeks ago.
Stay tune....
Grace
please reply re Benicar @ Benicar for Aussies
____________________
CFS, oct04 Ds=26/48, 4/07=7/24 MP PHI 2/05, PhII 6/05, PhIII 6/06, beni Q6H, Noirs rarely inside no nature light low watt, outside 40%10%, Hat, all covered, no gloves, paracetamol
|
RobertTownsend
Health Professional
| Joined: | Wed Oct 19th, 2005 |
| Location: | |
| Posts: | 101 |
| Status: |
Offline
|
|
Posted: Tue Jul 10th, 2007 04:55 |
|
FIRST ANNUAL GENERAL MEETING FOR THE AUSTRALIAN AUTOIMMUNITY FOUNDATION INC
The first AGM of the Australian Autoimmunity Foundation will be held in Melbourne on the weekend of August 25/26. The exact time and venue will be advised later this week. The purpose of the AGM is to receive the Management Committee's annual report and to elect a committee for next year.
The AGM will be quite short and followed by a Patient Networking Meeting of the type held in Melbourne in March this year.
The Annual Report of the Foundation will be mailed in hard copy format to all members of the Foundation before the end of July. As most members are interstate and unable to attend, we plan to rotate the AGM around to different capital cities year by year.
Robert Townsend
____________________
CFS 4yrs,crippled knees;Oct05 Phase 1;Feb 06 Phase 2 ; Mar06 1,25D-61pMol/L 25D-23nMol/K;Jul06 Ph3 start ;July 08 dose tapering some abx,daytime fatigue much lower, skin still very light sensitive ;knee mobility very constrained with limited walking
|
RobertTownsend
Health Professional
| Joined: | Wed Oct 19th, 2005 |
| Location: | |
| Posts: | 101 |
| Status: |
Offline
|
|
Posted: Mon Jul 16th, 2007 20:56 |
|
HEALTH INSURANCE BENEFITS FOR NoIR MEDICAL GLASSES
I have had many requests in regards to claiming health insurance benefits for NoIR Medical Glasses. Sydney Chris's approach ( see his posting above at June 23) - whereby he used a prescription from his GP to support his claim - is probably the best way to go, - at least for making a claim from a smaller fund.
There are several hundred Health Insurers and they all have different rules for ancilliary benefits
The larger funds ( such as Medibank Private) have rigid rules in the area of rebates for optical products. They will only provide rebates for purchases from providers who have been formally registered with them.
It is not presently possible for the Australian Autoimmunity Foundation (AAF) to become a Medibank Private Authorised Optical Dispenser, because none of our existing volunteers providing this service would qualify as an Optical Mechanic or as an Optical Prescriber.
If we do have any Australian members who have worked as an Optician or as an Optical Mechanic, we would love to hear from you, as your "supervision" of our busy mail order room might be all that is necessary for us to become recognised by Medibank Private as an Authorised Optical Dispenser
Robert Townsend
____________________
CFS 4yrs,crippled knees;Oct05 Phase 1;Feb 06 Phase 2 ; Mar06 1,25D-61pMol/L 25D-23nMol/K;Jul06 Ph3 start ;July 08 dose tapering some abx,daytime fatigue much lower, skin still very light sensitive ;knee mobility very constrained with limited walking
|
Sydney Chris
Member in Phase 3
| Joined: | Fri Feb 18th, 2005 |
| Location: | Sydney, Australia |
| Posts: | 436 |
| Status: |
Offline
|
|
Posted: Tue Jul 17th, 2007 09:15 |
|
Hi Robert,
Another option for those that have a script for corrective glasses and can afford it would be to use the Carl Zeiss lenses, which as far as I understand can be ground and fitted to selected frames.
This way you are simply claiming from your health fund for a prescription lens... no contest...
Best
Chris
____________________
Post viral syndrome IgG deficiency 125D74 IgG shots Ph1Mar05 Ph2Nov05 ModPh2Jan06 r/t KFTs Ph3Aug07 NoIRs lite exp r/t commute 25D<7.2(Jan07) 25D14.4(Mar08)
|
RobertTownsend
Health Professional
| Joined: | Wed Oct 19th, 2005 |
| Location: | |
| Posts: | 101 |
| Status: |
Offline
|
|
Posted: Thu Jul 19th, 2007 02:36 |
|
FIRST ANNUAL GENERAL MEETING FOR THE AUSTRALIAN AUTOIMMUNITY FOUNDATION INC
As advised last week the first AGM of the Australian Autoimmunity Foundation will be held in Melbourne on the weekend of August 25/26. The time and venue details are now fixed
Sunday August 26 at 3.00 pm
Place : Phylis Hore Meeting Room, rear of Kew Library, Cotham Road Kew
Light MP friendly refreshments will be served
The purpose of the AGM is to formally receive the Management Committee's annual report which is being mailed next week, and to elect a committee for next year.
The AGM will be quite short and followed by a Patient Networking Meeting of the type held in Melbourne in March this year. Members, non members and their families are all invited.
Robert Townsend
____________________
CFS 4yrs,crippled knees;Oct05 Phase 1;Feb 06 Phase 2 ; Mar06 1,25D-61pMol/L 25D-23nMol/K;Jul06 Ph3 start ;July 08 dose tapering some abx,daytime fatigue much lower, skin still very light sensitive ;knee mobility very constrained with limited walking
|
RichardM
Member in Phase 2
| Joined: | Tue Apr 17th, 2007 |
| Location: | Sydney, Australia |
| Posts: | 93 |
| Status: |
Offline
|
|
Posted: Fri Jul 20th, 2007 09:51 |
|
I visited Douglass Hanly Moir a couple of days ago to have some blood taken for a new D metabolite test.
I tried to verify they would handle it according to the instructions (which I printed out and gave to them, and they assured me they did as standard practice). I had a look at their instruction book though and it appeared that 25D samples are frozen in transit and 1,25D are centrifuged after sitting a while and then sent in an aliquot. I can't be completely sure this is a correct statement of their instructions, so don't take this as gospel.
They also told me they now have two vitamin D analysis machines because the demand is picking up ("we're not getting enough sun"!) I didn't talk about that potentially being problematic for many people.
I thought I'd pass it on because it means that there may be a different in analysis from earlier tests, but presumably if I keep going back to Douglass (and they handle samples correctly) then it should be the same procedure on the same machines from now on.
____________________
CFS IBS hypothyroid chronic sleepiness 125D61Ph1Sep07 Ph2Jan08 Armour Thyroid 25D<5May08 NoIRs low lux home lite exp r/t commute
|
Vicki SA
Member in Phase 3
|
Posted: Wed Aug 1st, 2007 20:51 |
|
Australian Autoimmunity Foundation Inc.
Adelaide Patient Networking Meeting Saturday 1st September 2007
WHERE – DIRC (Disability Information and Resource Centre)
http://www.dircsa.org.au/
195 Gilles Street, Adelaide
TIME - 10.30am – 1pm
Robert Townsend, current President of AAF is planning to join us.
Coffee and tea, Jasmine tea will be provided and we have use of the kitchen.
Undercover parking is available at the centre.
Public transport via Pulteney Street is closest to the venue.
Check Bus timetables here:
http://www.adelaidemetro.com.au/routes/stops.html
MP members, non members and family are welcome.
Cheerio Vicki
____________________
ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 40mg, 2008 - NoIRs, hat, cover with light r/t Work 3/7, NoIRs, hat, cover well, invis. zinc for outside, low lux home, Sept07 25D6.8, Mar08 14!
|
RobertTownsend
Health Professional
| Joined: | Wed Oct 19th, 2005 |
| Location: | |
| Posts: | 101 |
| Status: |
Offline
|
|
Posted: Fri Aug 3rd, 2007 02:16 |
|
The 2007 annual report of the Foundation was mailed to members earlier this week. If you have not received yours please let the Secretary know ( contact details at the foot of this post ) as that probably means we now have an incorrect mailing address for you.
An extract from this report which excludes the full financial report is shown below
Australian Autoimmunity Foundation, Inc
ABN 80 814 995 686
Dear Members,
We are pleased to present this first annual report of the Australian Autoimmunity Foundation, Inc.
Establishing the Foundation
The Foundation was established in October 2006 to:
Promote immune-enabling strategies for the management and treatment of autoimmune and other chronic inflammatory diseases.
Sponsor and support research, conferences, clinical practice, drug registration and drug availability for the treatment of autoimmune and related diseases, based upon the work of the Autoimmunity Research Foundation of Thousand Oaks California - USA.
Inform medical professionals about sources of advice for these treatments and support patients on the Marshall Protocol.
Advise government and community agencies on autoimmune and related disorders.
Collaborate with other health organisations.
The demands on care givers and patients are particularly unrelenting for those living with chronic inflammatory diseases and undertaking the Marshall Protocol. In our activities we always try to respect these demands.
Under Australian law, the Foundation cannot at present promote the use of the MP amongst the general public, since the MP is at this time an unregistered treatment for a range of AI and inflammatory conditions. We can,however, provide support activities for patients already under treatment, and raise awareness of the MP amongst medical professionals and researchers.
Activities in our first year
Within these constraints, we are pleased to be able to report that in our first year we have:
Incorporated the Foundation under the Victorian Act.
Gained charitable registration status - which made donations to our Gift Fund tax deductible.
Sponsored Professor Marshall's Australian tour last summer, hosting a number of patient and medical professional forums in Brisbane, Sydney, Canberra, Melbourne, Adelaide and Perth.
Ran a small number of patient networking forums, where patients and care givers were able to make contact, share information and create support networks in a variety of forms.
Became a distributor of the NoIR Medical range of medical glasses, greatly reducing delivery times and convenience to MP patients.
Negotiated for the importation of Olmesartan which is available via Compaundia Pharmacy (in Victoria), saving Aussie MP’ers 40 % over previously available personal importation sources
Engaged Deacon’s lawyers in Canberra to provide pro-bono legal advice on our activities.
During the year 20 of our members donated a total of $6,144 to the Gift Fund. We thank them each for their support. Through reselling of NoIR glasses, the volunteer efforts of the management committee, and the generosity of our donors, the Foundation has been able to build a healthy bank balance of $4,556 as at June 30.2007.
Aims for the year ahead
For 2008 the Foundation aims to:
Increase the number of patient network meetings, with meetings in Melbourne in late August, and in September in Sydney and Adelaide.
Increase the distribution of MP material, particularly to medical professionals, with free supply of information DVD’s on request.
Participate with medical researchers in medical conferences and meetings.
Improve the pricing and availability of compounded formulations of several of the tetracyclines and older macrolide drugs used on the MP.
Progress TGA registration of older drugs for a number of rarer AI conditions.
Launch a Foundation web site including a moderated online forum for members.
We thank all of the staff of the Autoimmunity Research Foundation of the USA for their enormous dedication and for their support of our activities here.
We will continue to support you as members in achieving the objectives of the Foundation, making the MP more accessible, easier and cheaper for all. Best to all …. we look forward to meeting with you in the year ahead.
Annual General Meeting
The AGM will be held in Melbourne on Sunday August 26 at 3.00 pm at the Phylis Hore Meeting Room, rear of Kew Library, Cotham Road Kew.
The purpose of the AGM is to formally receive this annual report and to elect a committee for coming year.
Signed on 19 July 2007 on behalf of the Management Committee
Robert Townsend, President
Robyn Russell, Vice President
Vice President (Sydney) Christopher Boys
Secretary ( Brisbane) Judy Williams
Treasurer (Adelaide) Vicki Ryan
Patron Professor Trevor Marshall
Address all correspondence to the Secretary,
J. Williams, P O Box 243, NORTHGATE Qld 4013
email edit : see http://www.ausautoimmunity.org.au/ Last edited on Sat Apr 19th, 2008 00:28 by
____________________
CFS 4yrs,crippled knees;Oct05 Phase 1;Feb 06 Phase 2 ; Mar06 1,25D-61pMol/L 25D-23nMol/K;Jul06 Ph3 start ;July 08 dose tapering some abx,daytime fatigue much lower, skin still very light sensitive ;knee mobility very constrained with limited walking
|
RobertTownsend
Health Professional
| Joined: | Wed Oct 19th, 2005 |
| Location: | |
| Posts: | 101 |
| Status: |
Offline
|
|
Posted: Sat Aug 18th, 2007 21:32 |
|
Australian Autoimmunity Foundation, Inc New arrangements for NoIR glasses
As of Monday 20 August, the Foundation is transferring the reselling of the NoIRs to a commercial organisation. It is now too big for our base of volunteers and we do not have the capital to stock up to the present level of demand.
Our AAF website at
http://www.ausautoimmunity.org.au
now contains the amended information : it describes the NoIR models which have adequate top and side protection from the light, as well as being durable enough to withstand a few years of 24/7 type use that is needed on the MP.
The firm who have the new stocks of NoIRs are
the Melbourne Compounding Pharmacy, Compoundia,
16 St Mangos Lane Docklands 3008.
phone number is (03) 9670 2882
fax 9670 9615.
They handle credit card orders.
Their prices are the same as we have been selling ( $48 for the light and medium ambers and $73 for the dark ambers)
Most of their compounding pharmacy business is mail order, and we expect their deliveries to be very prompt.
On our behalf, Compoundia will distribute AAF material ( brochure, newsletters etc) to people purchasing NoIRs from them.
Robert Townsend
____________________
CFS 4yrs,crippled knees;Oct05 Phase 1;Feb 06 Phase 2 ; Mar06 1,25D-61pMol/L 25D-23nMol/K;Jul06 Ph3 start ;July 08 dose tapering some abx,daytime fatigue much lower, skin still very light sensitive ;knee mobility very constrained with limited walking
|
Vicki SA
Member in Phase 3
|
Posted: Thu Aug 30th, 2007 02:16 |
|
G'day all,
Just a reminder about the Adelaide meeting!
Cheerio Vicki
Adelaide Patient Networking Meeting Saturday 1st September 2007
WHERE – DIRC (Disability Information and Resource Centre)
195 Gilles Street, Adelaide
TIME - 10.30am – 1pm
____________________
ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 40mg, 2008 - NoIRs, hat, cover with light r/t Work 3/7, NoIRs, hat, cover well, invis. zinc for outside, low lux home, Sept07 25D6.8, Mar08 14!
|
Suzie B
Member
| Joined: | Fri Aug 3rd, 2007 |
| Location: | Australia |
| Posts: | 18 |
| Status: |
Offline
|
|
Posted: Fri Aug 31st, 2007 00:22 |
|
Hi, I have ordered my NoIRs from Compoundia and their service was excellent. I received them within a week to country Victoria.
Regards Suzie B
____________________
start MP8/07, colectomy b/c of Ulc Colitis,RA,PSC,osteop,coeliac dairy int,ursofalk,pancreatic ext, D tests 06:1,25D=50 & 25D=23, avoiding light & D have NoIRs, Beni start 3/8/07,40mg q6h;
|
Sydney Chris
Member in Phase 3
| Joined: | Fri Feb 18th, 2005 |
| Location: | Sydney, Australia |
| Posts: | 436 |
| Status: |
Offline
|
|
Posted: Wed Sep 5th, 2007 11:24 |
|
NOTICE - AAF ANNOUNCEMENT
ALL SYDNEY BASED MP'ers, Carers and Practioners
There will be a patient network meeting, similar to those that have been held around the country over the past few months in SYDNEY, on Sunday 30 September.
These meetings are arranged and funded by the Australian Autoimmune Foundation (AAF), a not for profit body founded around 12 months ago by a group of MP patients, parents and scientific professionals.
Start time:
11am (to allow our Canberra friends sufficient travelling time), through to 1:30pm.
Location:
North Shore.. to be confirmed as soon as I can find someone at the Council who can respond to a phone call..!
Agenda:
We will share information on how to navigate the study site and recommended site materials to print out; a showing of some DVDs and plenty of time for 1:1, group chats and Q&A.
Light refreshments will be provided.
I will update you as more information is available.
RSVP to: Sydney Chris - c/o marshallprotocol.com
With thanks
Chris
Vice President - AAF
____________________
Post viral syndrome IgG deficiency 125D74 IgG shots Ph1Mar05 Ph2Nov05 ModPh2Jan06 r/t KFTs Ph3Aug07 NoIRs lite exp r/t commute 25D<7.2(Jan07) 25D14.4(Mar08)
|
RobertTownsend
Health Professional
| Joined: | Wed Oct 19th, 2005 |
| Location: | |
| Posts: | 101 |
| Status: |
Offline
|
|
Posted: Sat Sep 8th, 2007 23:57 |
|
ANNUAL GENERAL MEETING OF THE AUSTRALIAN AUTOIMMUNITY FOUNDATION
The first Annual General Meeting of the Australian Autoimmunity Foundation was held on Sunday 28th August 2007 at the Phylis Hore Room , Kew Library, in Melbourne. The meeting received the Annual Report of the outgoing committee and elected a new Management Committee for 2008/2009 comprising :
President Robyn Oakeshott ( Canberra)
Vice President Chris Boys ( Sydney)
Secretary and Treasurer Vicki Ryan (Adelaide)
Committee members Inge Danaher (Melbourne) and Mirek Wozga (Perth)
There remains one vacant position which the new Committee will fill by invitation. I remain as Public Officer.
Robert Townsend
____________________
CFS 4yrs,crippled knees;Oct05 Phase 1;Feb 06 Phase 2 ; Mar06 1,25D-61pMol/L 25D-23nMol/K;Jul06 Ph3 start ;July 08 dose tapering some abx,daytime fatigue much lower, skin still very light sensitive ;knee mobility very constrained with limited walking
|
Sydney Chris
Member in Phase 3
| Joined: | Fri Feb 18th, 2005 |
| Location: | Sydney, Australia |
| Posts: | 436 |
| Status: |
Offline
|
|
Posted: Tue Sep 11th, 2007 04:40 |
|
UPDATED NOTICE
ALL SYDNEY BASED MP'ers, Carers and Practitioners
There will be a patient network meeting, similar to those that have been held around the country over the past few months in SYDNEY, on Sunday 30 September.
These meetings are arranged and funded by the Australian Autoimmune Foundation (AAF), a not for profit body founded around 12 months ago by a group of MP patients, parents and scientific professionals.
Start time:
11am (to allow our Canberra friends sufficient traveling time), through to 1:30pm.
Location:
Ku ring gai Council Library meeting room - Pacific Highway, Gordon. The room has limited windows with plenty of blinds, rest rooms are adjacent and a sandstone courtyard is across the hall for those that can make it outside.
Getting there:
There are both train and bus stops about 3 - 4 minutes walk from the library which is located on the corner of Pacific Highway and Park Street.
Parking is available in both Werona Avenue (adjacent the station) and in the Gordon Shopping Centre, which can be accessed via Dumaresq street. There will be signs posted around the library to direct you to the room.
If more information is required you can access the Ku ring gai Council web site which has maps available.
Agenda:
We will share information on how to navigate the study site and recommended site materials to print out; a showing of some DVDs and plenty of time for 1:1, group chats and Q&A.
Light refreshments will be provided.
RSVP to: Sydney Chris - c/o marshallprotocol.com
Look forward to hearing from you.
With thanks
Chris
Vice President - AAFLast edited on Tue Sep 11th, 2007 10:09 by Sydney Chris
____________________
Post viral syndrome IgG deficiency 125D74 IgG shots Ph1Mar05 Ph2Nov05 ModPh2Jan06 r/t KFTs Ph3Aug07 NoIRs lite exp r/t commute 25D<7.2(Jan07) 25D14.4(Mar08)
|
Sydney Chris
Member in Phase 3
| Joined: | Fri Feb 18th, 2005 |
| Location: | Sydney, Australia |
| Posts: | 436 |
| Status: |
Offline
|
|
Posted: Mon Sep 24th, 2007 09:03 |
|
REMINDER
The Sydney patient network meeting which is being hosted by the Australian Autoimmune Foundation is on this Sunday - 30 September at Gordon.
Look forward to seeing you there..
Chris
____________________
Post viral syndrome IgG deficiency 125D74 IgG shots Ph1Mar05 Ph2Nov05 ModPh2Jan06 r/t KFTs Ph3Aug07 NoIRs lite exp r/t commute 25D<7.2(Jan07) 25D14.4(Mar08)
|
Sydney Chris
Member in Phase 3
| Joined: | Fri Feb 18th, 2005 |
| Location: | Sydney, Australia |
| Posts: | 436 |
| Status: |
Offline
|
|
Posted: Sun Sep 30th, 2007 07:07 |
|
WITH THANKS
Congratualtions to everyone that was able to attend the Sydeney Patient Networking meeting today at Gordon.
A number of patients bought their partners, who were able to gain a better understanding of what their spouse was going through and even get some reinforcement of the validity of the MP and its application.
There was plenty of good tips on how and where to purchase meds, lifestyle, clothing and even some thoughts on taking holidays that was shared amongst the group.
I think its fair to say that 21/2 hours was probably not long enough, but for people with Th1 illnesses it a big day...
Best to all.. look forward to seeing you at the next session.
Sydney Chris
Vice President - AAF
Last edited on Sun Sep 30th, 2007 07:16 by Sydney Chris
____________________
Post viral syndrome IgG deficiency 125D74 IgG shots Ph1Mar05 Ph2Nov05 ModPh2Jan06 r/t KFTs Ph3Aug07 NoIRs lite exp r/t commute 25D<7.2(Jan07) 25D14.4(Mar08)
|
Grace
Advocate
| Joined: | Tue Sep 14th, 2004 |
| Location: | Australia |
| Posts: | 388 |
| Status: |
Offline
|
|
Posted: Mon Oct 8th, 2007 07:13 |
|
Q.Has anyone contacted Mary from Noirs recently, or is there another contact person for us Aussies?
mary.klinke@NOIR-Medical.com
Grace
____________________
CFS, oct04 Ds=26/48, 4/07=7/24 MP PHI 2/05, PhII 6/05, PhIII 6/06, beni Q6H, Noirs rarely inside no nature light low watt, outside 40%10%, Hat, all covered, no gloves, paracetamol
|
Vicki SA
Member in Phase 3
|
Posted: Mon Oct 8th, 2007 09:28 |
|
Grace,
See post above from Robert. The NoIRs are now available via Compoundia.
Cheerio Vicki
____________________
ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 40mg, 2008 - NoIRs, hat, cover with light r/t Work 3/7, NoIRs, hat, cover well, invis. zinc for outside, low lux home, Sept07 25D6.8, Mar08 14!
|
Grace
Advocate
| Joined: | Tue Sep 14th, 2004 |
| Location: | Australia |
| Posts: | 388 |
| Status: |
Offline
|
|
Posted: Mon Oct 8th, 2007 09:52 |
|
Vicky thanks, I should have explain that I looking at getting the Noir lenses only, not glasses. 
http://www.marshallprotocol.com/forum11/8493.html
Grace
____________________
CFS, oct04 Ds=26/48, 4/07=7/24 MP PHI 2/05, PhII 6/05, PhIII 6/06, beni Q6H, Noirs rarely inside no nature light low watt, outside 40%10%, Hat, all covered, no gloves, paracetamol
|
Grace
Advocate
| Joined: | Tue Sep 14th, 2004 |
| Location: | Australia |
| Posts: | 388 |
| Status: |
Offline
|
|
Posted: Tue Oct 9th, 2007 21:53 |
|
Mary Klinke is still our contact
The lenses are available in 4 and 8 base curves, 72mm in diameter. The cost for the lenses is close to the cost of the entire glass, 2% 54, 10% 33, and 40%$33.
____________________
CFS, oct04 Ds=26/48, 4/07=7/24 MP PHI 2/05, PhII 6/05, PhIII 6/06, beni Q6H, Noirs rarely inside no nature light low watt, outside 40%10%, Hat, all covered, no gloves, paracetamol
|
Current time is 07:36 | Page:   1 2 3 4 5 6 7 8 9 10 ...   |
|
|
|
|
