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Follow MPA on the 2011 Smiling for Smiddy Challenge |
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Written by Herman Herlaar
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Thursday, 08 September 2011 |
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FOLLOW MPA ON THE 2011 SMILING FOR SMIDDY CHALLENGE
For the third year Lisa McFadyen, CEO of MPA, will be on the Road Crew for the Smiling for Smiddy Challenge, travelling through Western Queensland to raise funds for cancer research.
Lisa says: "It's a fun week, but it's also 8 days of early rises and long days. Sometimes we don't finish until almost midnight. Then it's up at 4:30am the next day to do it all again!"
Each year 50 riders cycle 1,600kms from Brisbane to Townsville to raise money for cancer research, including melanoma and prostate cancer and complementary therapies.
Last year the Challenge raised $570,000 and they are on track to achieve that again this year.
Earlier this year the Smiling for Smiddy Challenge donated $120,000 to MPA over the next 3 years.
"We feel very privileged to be a funding recipient of the ride," Lisa said. "It's such a great cause to be a part of."
In 2006 Adam Smiddy died from an aggressive melanoma, aged 26. His legacy lives on through the Smiling for Smiddy Challenge.
To follow the ride and read the daily rider journals go to: www.smiddy.org.au or www.smiddyfacebook.com.au
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Barry's 'Round the World Clipper Race' Update |
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Written by Herman Herlaar
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Monday, 05 September 2011 |
BARRY MOORE'S ROUND THE WORLD CLIPPER RACE -
Raising Funds for Melanoma Patients Australia
Update from Chris Moore:
Hi everyone,
With Leg 1 of the 11-12 Clipper Round the World race done and dusted, it's a good time to reflect on the race so far from a 'Team BAMO' perspective.
As you may have heard, Barry's team has just won race 2 (Madeira to Rio), which is a fantastic effort on their behalf.
The computer on Gold Coast Australia was out of action during the initial Southampton - Madeira sector, so they were 'incommunicado' for a
while. We quickly learnt that communication between the yachts and the rest of the world is also hampered by the lack of time for the crew to engage in
this kind of 'luxury' plus their focus and dedication to the competitive aspects of the race.
To quote BAMO himself in one of his initial emails "Things are not exactly conducive to sending long emails but maybe I can give you some
snippets now again ...with a 20 knot wind blowing us along at about 10 knots, it (sending emails) is a bit like trying to type in a washing machine".
Back on dry land, many of us remained glued to the Race Viewer (on the Clipper website) and watched with excitement and pride as Gold Coast
Australia won both Race 1 and 2. The Clipper Facebook pages have provided many smiles as BAMO's 'chief
blogger' Jan Dennis and I have traded comments and jibes with the family of other crew members. We have done our best to show our support and
maintain good sportsmanship at the same time (ie. not rub it in).
All the crew are elated but exhausted after their magnificent efforts. Barry says they are really looking forward to a beer, beer, beer, steak, dry
clothes and sleeeeeeep.
As far as our fundraising for Melanoma Patients Australia is concerned, we are doing really well, but have slowed down a lot since the race
started. The total on the Everyday Hero site is currently $7,420.00. I know some of you are planning to make a donation for each completed leg, so hopefully
that total will climb again over the next few days.
Thanks again for all your fantastic support - if you're not already doing so, can I suggest you follow the race via the Clipper website -
www.clipperroundtheworld.com and via Barry's blog
http://roundtheworldrace.blogspot.com/ - it's incredibly exciting stuff!
Regards,
Chris & Jan
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Melanoma Community Hubs - This Week 05/09 - 9/09/2011 |
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Written by Herman Herlaar
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Monday, 29 August 2011 |
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BRISBANE MELANOMA COMMUNITY HUB (EVENING)
Thursday 8 September 2011
Kedron Wavell Services Club, Hamilton Road, Chermside
7:00pm
CANBERRA MELANOMA COMMUNITY HUB
**Please note: this group will NOT meet this month. Next meeting scheduled for: Friday 14 October 2011**
SMILING FOR SMIDDY CHALLENGE ROLLS INTO TOWNSVILLE!
Saturday 10 September 2011
The Strand, Townsville
2:30pm
Come along to see the Smiddy guys & girls roll into town after 8 days on the road and 1,600kms travelled - all in the name of raising funds for cancer research. Each year MPA takes part in the ride and is a funding beneficiary of the Challenge, so show your support by clapping us in! Hope to see you there!
To RSVP please call Lisa on 1300 88 44 50. We hope to see you there!
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Metastatic Melanoma Research Study |
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Written by Herman Herlaar
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Friday, 26 August 2011 |
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Metastatic Melanoma Research Study
IMS Health is an independent company that specialises in conducting research into healthcare.
We are currently conducting research amongst people who have Advanced Melanoma as well as obtaining feedback from their carers, partners or close family members. In particular we are interested in talking to people who have had some treatment such as chemotherapy, treatment in a trial or via a special access scheme. Additionally, we would like to speak to those that may have elected not to have any treatment.
We are investigating patient’s treatment experiences, plus the kind of information and support they and their carers receive.
The research will take the form of confidential interviews lasting for up to 60 minutes conducted by a senior IMS researcher (face to face for those people living in Melbourne, Sydney or Brisbane, or by telephone for those living in other areas). The interviews can take place in the patient’s home or at another convenient venue of the respondent’s choice.
People taking part in the study will be paid $100 along with receiving a summary of the research findings.
The study is being conducted by IMS Health on behalf of Bristol-Myers Squibb a pharmaceutical company that is developing treatments for Metastatic Melanoma. The study is confidential and conducted in accordance with the Australian Market and Social Research Code of Conduct.
Melanoma Patients Australia (MPA) is kindly assisting us to contact suitable patients, carers and their close family members who wish to take part in this important study.If you would like to participate in this study, please provide your contact details (name, telephone or email address and the city or town where you live) to Melanoma Patients Australia to pass on to IMS. We will than contact you to arrange a date and time for the interview.
To participate in this study please contact Lisa McFadyen (MPA) on 1300 88 44 50 or
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If you have any questions about the study, please do not hesitate to get in contact Tim Jennings at
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or on +61 (2) 9805 6890.
Tim Jennings
Senior Researcher, IMS Health
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Clinical Trial Link for Advanced Melanoma |
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Written by Herman Herlaar
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Wednesday, 27 July 2011 |
The information below was received from the Melanoma Independent Community Advisory Board.
Table on the available anti-PD-1 and anti-PDL-1 clinical trials for advanced melanoma patients
Dear Melanoma Patients,
We need access to the latest clinical trial information, because for many of us, clinical trials offer the best treatment options.
Ipilimumab (Yervoy) is a remarkable landmark in the immunological treatment of advanced melanoma, but it will only positively affect a minority of us. Other very promising sister immunomodulatory drugs are also in development, particularly those directed at the PD pathway : anti-PD-1 and anti-PDL-1. However, their progress through clinical trials has often been hard to follow.
We have therefore compiled the table on the available anti-PD-1 and anti-PDL-1 clinical trials for advanced melanoma patients. Be aware, however, that the listings of available seats are overstated in many instances. Some seats have been filled, and some become available sporadically, so you will need to contact the centers directly. You can follow the links for each trial to the clinicaltrials.gov listings to obtain more complete information on the trials, including:
- telephone and email contacts at participating centers
- protocol schedules
- complete criteria for inclusion and exclusion, and more.
We believe this information is accurate as of July, 2011, and will appreciate suggestions on corrections and additions.
Patricia Garcia-Prieto (Patient Advocate, founder of M-ICAB; Europe)& Jonathan Friedlaender (MIF Board Member abd FDA patient representative)
To follow the links to the table please go through the link below:
http://m-icab.org/en/component/content/article/38-news/156-table-on-the-available-anti-pd-1-and-anti-pdl-1-clinical-trials-for-advanced-melanoma-patients
http://m-icab.org/en/component/content/article/38-news/156-table-on-the-available-anti-pd-1-and-anti-pdl-1-clinical-trials-for-advanced-melanoma-patients
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Written by Herman Herlaar
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Wednesday, 20 April 2011 |
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ATTENTION: All Members
Melanoma Patients Australia now has a new telephone number - 07 3342 6919. Please add this new number to your diaries and contact lists.
Stay tuned for more information about our new FREE DIAL1300 number!
Apologies for any inconvenience while we shift to our new numbers.
Regards,
The MPA Team
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Brisbane Rally Against Federal Budget Cuts for Medical Research |
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Written by Lisa McFadyen
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Tuesday, 19 April 2011 |
It has been predicted that the Federal Budget in May will announce major funding cuts in health and medical research. This would be a disaster for research and researchers in Australia, particularly in the area of melanoma, an area which has only recently started to yield results in the treatment of melanoma. Slashing research funds will mean fewer successful drugs will be developed in Australia, meaning patients will have less access to potentially life saving treatments. Better healthcare is driven by the research being done in our universities, hospitals and institutes. This is now under threat. With so much promising research being conducted in the melanoma field, it is vital that this research continues to be funded. Melanoma Patients Australia along with the Queensland Institute of Medical Research (QIMR) invites members to join us for a peaceful Rally to demonstrate our opposition to this short-sighted decision. This decision may affect you! TUESDAY 19 APRIL 2011 KING GEORGE SQUARE, BRISBANE 12:00 NOON Come along to have your say and show your support! Please take 5 minutes to email your local FEDERAL member, or Wayne Swan (
This e-mail address is being protected from spam bots, you need JavaScript enabled to view it
), or Nicola Roxon (
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), or Julia Gillard (http://www.pm.gov.au/contact-your-pm) or all of the above. |
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National Health Reform: Have Your Say on E-Health |
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Written by Herman Herlaar
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Sunday, 17 April 2011 |
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HAVE YOUR SAY ON E-HEALTH The Australian Government has committed $466.7 million (2010-11 Budget) to establish key components of the personally controlled electronic health record (PCEHR) system. The system is a key element of the Australian Government's health reform agenda to provide better health care for all Australians. From July 2011, Australians who choose to participate can register for a personally controlled e-health record. They can also allow their authorised healthcare providers to securely access their important health information. A Draft concept of Operations: Relating to the introduction of a PCEHR system document is now available online. Feedback on the document is encouraged from all members of the community - consumers, carers, healthcare professionals, and the information and communication technology (ICT) industry. The document explains how the PCEHR might look what informaiton it might contain, how it might function, security and privacy settings, and how it will interface with other clinical systems. Your feedback is an important part of the ocnsultaiton process to help underpin the Government's commitment to ensure all Australians, who choose to, can register for a PCEHR. Submissions can be made at www.yourhealth.gov.au until 31 May 2011. [This information is taken from: The Courier Mail, 16 April 2011, p98] |
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Melanoma - Independent Cancer Advisory Board |
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Written by Lisa McFadyen
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Monday, 04 April 2011 |
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Melanoma Patients Australia is proud to be a part of the Independentl Cancer Advisory Boards Initiative (M-ICAB). Details below. http://www.m-icab.org/ *** The European Cancer Patient Coalition (ECPC) http://www.ecpc-online.org/ has decided to launch a series of Independent Cancer Advisory Boards as patient-led,independent advisory panels that would be contributing to identifying innovative cancer solutions – especially for underserved cancers and under-represented cancer type populations. This type of organizationalstructure (inspired on the successful experience of the HIV/AIDS Community Advisory Boards) will offer a platform for all stakeholders to experience a newmodel of connectivity that identifies the perspective of cancer patients at thecore. Therefore, the inclusion of ICABs and respect for targeted cancer communities through on-going dialogue with all stakeholders has been identified as strategic imperative on which we need to take action. The primary rationale and demand by the cancerpatient community for the setting up of ICAB is that they have a right to develop innovative approaches and solutions for specific cancer issues that would not be achievable by single actors alone, based on a true and meaningful partnership with researcher/clinicians, the pharmaceutical/diagnostic companies, the EU and regulatory bodies. CAB members will include cancer patients and patient advocates. Some of the ICAB members are trial participants. Manyhave considerable scientific backgrounds or relevant professional training, while others have no medical or scientific background, but the educatedexperience of living with the disease. All have a strong motivation to shiftthe discourse away from simply “reducing the burden of cancer care” to planningfor better cancer survivorship, better outcome, access and care. Theimportance of building and sustaining an ongoing dialogue with stakeholders andtraining ICAB members on how to proactively participate in the definition andimplementation of new solutions in cancercare is critical to getting the mos tout of a ICAB's efforts. The first Independent Cancer Advisory Board was launched on March 22nd 2011 for Melanoma. This is an undeserved cancer where targeted therapies for advanced disease are at a turning point but still quiteexperimental, trial designs and chosen endpoints are perceived as not always considering the patients' perspective, industry's and investigators' interests seem to be quite fragmented, access to treatment information is limited and where patient advocacy in Europe is still at its infancy. Melanoma ICAB Mission To provide meaningful and broad community input with priority for cancer patients into the scientific efforts, operations, and activities, overcoming any perceived conflict of interest. Objectives 1. To offer patients a strong Melanoma patient community identity that creates cohesion and empowers patients tobecome involved in all decision making concerning Melanoma at a European but also larger international level. 2. To offer industry, researchers and clinicians a unique way of relating to each other andofcommunicating with Melanoma patients by participating in events where the agenda and topics are established from the perspective of patients living with Melanoma. 3. To act in complementary way to patient communication initiatives taken by the industry and by researchers andclinicians working in Melanoma. 4. To develop stronger partnership between European and non-European Melanoma Patient associations. For more information on our activities and how to collaborate pleasevisit our website http://www.m-icab.org/ |
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FDA clears first melanoma drug to extend survival |
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Written by Lisa McFadyen
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Friday, 25 March 2011 |
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FDAclears first melanoma drug to extend survival By MATTHEW PERRONE Washington Federal health regulators have approved a new cancer drug fromBristol-Myers Squibb that is the first therapy to prolong the lives of patientswith melanoma. It's the first new drug the Food and Drug Administration hasapproved to treat melanoma since 1998. Older medications have shown few resultsin fighting the difficult-to-treat skin cancer. The injectable drug, called ipilimumab (ih-pee-LEE-moo-mab),uses the body's immune system to help fight cancer. It differs fromchemotherapy drugs which attack the disease with chemicals. Studies of the drug, which has the brand name Yervoy (Yehr-VOY),showed patients lived an average of four months longer than those taking oldermedications. While only a small group of patients respond to the drug,researchers say it is an important milestone. http://www.businessweek.com/ap/financialnews/D9M6C5881.htm |
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