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LEUKAEMIA FOUNDATION OF QUEENSLAND Issue Two 2010

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Mother and author, Sandra Evans recently launched her inspiring book Eight Seasons with the support of the Leukaemia Foundation and the International Program of Psycho-Social Health Research (IPP-SHR) CQUniversity.

Eight Seasons is an intensely personal account of Sandra’s family’s journey with childhood leukaemia.

Sandra’s beautiful and exuberant daughter, Tahlia was just four years old when she was diagnosed with acute lymphoblastic leukaemia. Throughout the family’s journey from diagnosis, treatment and recovery, Sandra kept a journal outlining the devastating impact of the disease and its treatment and the incredible strength and courage required to keep going.

Sandra said, “A diagnosis of leukaemia or blood cancer has devastating effects on any family. It is an arduous journey and sometimes it is hard to see light at the end of a very long tunnel. My hope is that this book will be a gift of security, assisting parents to see what may be around the corner with a child on chemotherapy, and offering an insight into how we as parents coped.”

A family’s journey through childhood leukaemia

Survivorship research pg 2 | Support services pg 3 | Research grant recipients pg 4-5 | News and events pg 6-7

continued page 5 Sandra and Randall Evans with daughters Lauren and Tahlia

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Long awaited research has begun on the development of a survivorship program designed to improve the recovery and well being of patients who have survived leukaemia, lymphoma, myeloma and related blood disorders.

The Leukaemia Foundation of Queensland in partnership with the International Program of Psycho-Social Health Research (IPP-SHR) at the Central Queensland University has started this important project that will draw on the experience of survivors as they attempt to return to their normal routines following intensive medical treatment.

The collaboration with the Leukaemia Foundation of Queensland will specifically examine physical, emotional and social issues associated with survivorship and allow the Foundation to extend their existing support services and provide the best possible care to patients both during their treatment and beyond.

Data will be gathered in a series of interviews with survivors who have been under the care of the Leukaemia Foundation. The research will be assisted by Leukaemia Foundation Support Services Coordinator, Maryanne Skarparis. Her involvement will be through an innovative research scheme, the IPP-SHR Research Practitioner Scheme, which enables health professionals to participate in research relevant to their professional practice. The research is therefore not only important for survivors, but also as framework for research collaboration between university and service providers.

Director of Support Services at the Leukaemia Foundation Queensland, Barbara Hartigan is thrilled that the first steps towards an effective survivorship program have taken place, thanks to the assistance of the IPP-SHR, CQUniversity.

“We have long had anecdotal evidence which identified that many people we care for are struggling with various issues post treatment. Leukaemia and blood cancer survivors have a variety of individual needs which can impact on their lives into the future. A survivorship program will assist them to successfully transition back to a productive and happy life,” said Mrs Hartigan.

Dr Pam McGrath, NHRMC Senior Research Fellow and IPP-SHR Director said, “The recent advances in the care and treatment of haematological malignancies mean that more patients are now achieving a cure, or at least substantial lengths of time in remission.”

“Understanding survivorship issues is an important component of complete cancer care. It will assist in developing programs to help patients and their families following cancer treatment,” Dr McGrath said.

“The Leukaemia Foundation of Queensland should be commended for initiating this research and for recognising the definite needs for a program of this type. “

IPP-SHR is a collaborative initiative jointly funded by the National Health and Medical Research Council and CQUniversity. The primary aim of this international program in research is to examine and document the human experience of serious illness (both physical and mental). IPP-SHR is a broad program addressing a wide range of topic areas including: haematology/oncology; mental health; palliative care; acute medicine; bioethics; rural and remote health; Indigenous health; spirituality; paediatrics; birth studies and service delivery evaluation.

In essence the program is concerned with contributing to the development of psycho-social services that assist people to deal with the many challenges associated with significant physical and/or mental health events. The core work is to ‘make a difference’ through research, publication, education and collaboration.

Thank you to the thousands of generous Queenslanders who shaved, coloured and donated to make World’s Greatest Shave 2010 the most successful in the event’s 13 year history.

We are thrilled that Queensland’s fundraising tally currently stands at $3.8 million, with more funds still coming in. What a fantastic result!

Survivorship research initiative begins

most successful world’s greatest shave ever!

Dr Pam McGrath

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When a person is diagnosed with leukaemia or a related blood disorder, it becomes not only a very anxious time, but also a very busy time as they are inundated with information regarding their medical treatment, as well as the myriad of issues associated with how their family will deal with this very traumatic situation. This can be totally overwhelming and those affected may not know where to turn to for help.

It is for this very reason that the Leukaemia Foundation exists, and its support services staff are always looking at ways they can make contact with as many metropolitan and regional patients and families as possible, and let them know how the Foundation can help.

Our support services staff regularly visit all major hospitals in Brisbane and Townsville, and have recently extended their reach to include weekly visits and regular ‘coffee, cake and chat’ mornings at the Gold Coast, Toowoomba, Mackay and Cairns. These visits provide more patients with access to information, emotional support, counselling and practical assistance. Visits to the Sunshine Coast are also planned for the near future.

According to the Director of Support Services, Barbara Hartigan, the Leukaemia Foundation of Queensland has also been exploring ways it can overcome the difficulties of isolation and access to resources that regional and rural patients often experience.

“We have a fantastic range of services available for patients and families as they go through diagnosis and treatment, as well as when they return home and face the challenges common to blood cancer survivors. Our focus is getting the word out and letting people know we are there for them and able to offer assistance no matter where they live,” Barbara said.

“Our network of 20 branches around the state has always been a fantastic first contact point and

Keeping in touch with patients, no matter where they live

support for local patients and their families and friends, but we are also looking to technology to ensure that more patients in remote and rural communities do not miss out on being cared for.”The Leukaemia Foundation of Queensland is currently developing a comprehensive website which will be easy to navigate and provide valuable information for patients on all aspects of their disease and its treatment, as well as ways the Foundation can help them.

Telephone Discussion Forums are also a new initiative aimed at providing regional patients and carers the opportunity to connect with others experiencing a similar situation, wherever they live across Australia.

“It can be hard for people who are not living with a life threatening illness to understand what it’s like. If you live in a regional area, you might not meet other people with these diseases. In a telephone discussion forum you can share experiences and tips, and become part of a support network in the comfort of your own home. The discussions are facilitated by a trained Leukaemia Foundation health professional,” Barbara said.

Patients and carers also have access to regular disease newsletters (myeloma, lymphoma and amyloidosis) as well as a range of brochures which aim to keep them up to date with information.

For families who have lost a loved one through leukaemia or related blood disorder, the Foundation offers face to face or telephone counselling as well as a bi-annual newsletter, Living Well With Grief, to anyone across Queensland.

There is no charge for any of the Leukaemia Foundation’s services.

If you would like more information about any of the Leukaemia Foundation of Queensland’s support services phone 1800 620 420.

Dr Pam McGrath

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As part of its ongoing commitment to funding innovative research, the Leukaemia Foundation of Queensland is supporting three promising young researchers, Renee Robb, Kimberley Jones and Sara Charmsaz, based at the Foundation’s Research Unit at the Queensland Institute of Medical Research.

In 2009/2010 the Foundation will spend $1.2 million in Queensland to fund medical research into finding improved treatments and cures for leukaemias, lymphomas, myeloma and related blood disorders.

The Leukaemia Foundation of Queensland CEO, Peter Johnstone, said the Foundation was proud to be supporting Renee, Kimberley and Sara by providing funding to assist with their research for the duration of their PhD studies.

“Not only do we provide support and care to current patients and their families, but the Foundation also has a longer term commitment to a better future for patients through supporting these cutting edge research projects which will ultimately lead to improved treatments, cures and outcomes,” Mr Johnstone said.

Renee Robb“Since beginning my PhD two years ago, I have thoroughly enjoyed being involved in research that is translated into the clinic to improve outcomes in patients undergoing bone marrow transplants,” Ms Robb said.

Funding $120,000 over three years (2008-2010)

Bone marrow transplants (also known as stem cell transplants) are an important treatment option for curing blood cancers. The transplant involves replacing the patient’s stem cells (the ‘mother’ cells which produce white and red blood cells as well as platelets) from their bone marrow with healthy stem cells from a genetically similar donor. However, a complication arising from this process is graft versus host disease (GVHD); the transplanted stem cells recognise the patient as foreign and mount an immune response. GVHD develops in 50 to 70 per cent of patients post transplant, with up to 50 per cent of patients dying as a result.

Ms Robb is developing a new targeted treatment to prevent GVHD. Using new therapeutic strategies, she is hoping to change specific immune cells during a stem cell transplant. This will potentially reduce the effects of GVHD to improve patient survival rates.

If the approach results in more successful transplant outcomes, then the development of a new treatment for use therapeutically will be pursued.

“The aim of my studies is to increase the number of patients cured by transplantation,” Ms Robb said.

Sara Charmsaz“My interest in cancer research, as well as losing one of my close friends to cancer, led me to begin my PhD in leukaemia research, with the hope that it may bring us one step closer to helping cancer patients and their families,” Ms Charmsaz said.

Funding $120,000 over three years (2010-2012)

Ms Charmsaz is investigating potential new therapeutic agents for treating acute leukaemias, particularly in adult patients.

In particular, she is looking to target leukaemic cells with an antibody agent – used alone or linked to a cytotoxic (chemotherapy) drug or short range radioactive isotope.

The antibody will seek out leukaemia cells by recognising Eph proteins which are produced by leukaemias and many other cancers. The Eph gene family plays an important role in the early development of embryos but is generally inactive in adult tissues.

“It’s been shown that when Eph genes are active in cancer cells, they correlate with invasive and metastatic behaviour,” said Ms Charmsaz.

“I’m seeking to determine the role of these genes in leukaemia through laboratory and preclinical studies, which will allow me to explore targeting them with therapeutic agents.”

“My ultimate goal is to provide proof of principal that these agents can be used to treat leukaemia with minimal toxic effects, providing a new approach to acute leukaemia treatment.”

Leukaemia Foundation supports talented, young researchers

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Kimberley Jones“My PhD has a strong translational focus, meaning that my works is aimed at being clinically applicable. It’s very motivating to know that the work we’re doing could aid in producing a new vaccine or treatment for people with lymphoma,” Ms Jones said.

Funding $120,000 over three years (2009-2011)

Hodgkin lymphoma (HL) is a cancer of the lymphatic system that most commonly occurs in adolescents and young adults. Although current therapies used to treat HL are often successful, up to 30% of patients with advanced HL will progress or relapse, and less than half of these patients will respond to conventional second-line ‘salvage’ treatments.

Why do more than 15% of HL patients relapse and fail to respond to treatment? Is there a genetic explanation? Ms Jones hopes to find an answer by investigating the link between HL development and infectious mononucleosis (IM) and Epstein-Barr Virus (EBV). She is examining the immune system responses against EBV in HL patients, and how this may be influenced by the patient’s genetics.

The results from Ms Jones’ research will be used to design a vaccine to boost immunity in order to prevent and treat this debilitating disease in a subset of HL patients.

“There is an urgent need for novel treatment strategies such as this which specifically target only the malignant cells in Hodgkin lymphoma,” Ms Jones said.

Ms Jones’ research is being supervised by Associate Professor Maher Gandhi whose research into lymphoma was funded by the Leukaemia Foundation of Queensland in 2008.

“During our journey with Tahlia, I was reassured by the journeys of others who had been down the same road. I hope Eight Seasons may help give air to some of the many emotions we as parents feel but often cannot express. Knowledge is comfort, and hopefully this book will provide some comfort for parents and carers of children on chemotherapy as they adjust to the reality of living with a child with cancer. I want parents to know that they are not alone.”

The IPP-SHR CQUniversity has supported Sandra in her vision to create a book which would help other families through the emotional journey of a leukaemia diagnosis and treatment.

Dr Pam McGrath, Director, IPP-SHR CQUniversity said, “When I first read the manuscript I had just completed a five year longitudinal study documenting the psycho-social impact of childhood leukaemia on patients and their families.”

“Everything Sandra wrote about from her own experience resonated with the findings from the study. I could see immediately that the book was going to be an excellent resource which could help to normalise the experience for other families.”

Director of Support Services at the Leukaemia Foundation of Queensland, Barbara Hartigan said Eight Seasons was an engrossing read and a valuable resource for other families who faced the awful prospect of childhood cancer.

“Sandra Evans, like most mothers never expected to have to deal with the terrifying journey of childhood leukaemia. Unfortunately, a child can be diagnosed with a life threatening form of leukaemia at any age, leaving the whole family shocked and devastated. Sandra has had the immense courage to honestly document her personal experience of the tremendous highs and lows associated with the battle to beat the disease,” said Mrs Hartigan.

“Eight Seasons will give insight, practical information and encouragement to other families who are forced to go on this traumatic journey. It is also a story of hope as we see Sandra and her family summon the strength to deal with the ordeal and come through the other side.”

Eight Seasons will be available at the CQUniversity online book shophttp://www.ipp-shr.cqu.edu.au/bookshop/?8seasons for $23.95 with the proceeds going to psycho-social research.

A family’s journey through childhood leukaemia continued

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The Leukaemia Foundation of Queensland and K’s 4 Country Kids are thrilled to be the beneficiary of Nissan’s generosity in 2010 following the donation of a vehicle to be used as an art union prize.

Nissan also generously provided two additional vehicles for use at the Foundation’s accommodation centres in Brisbane and Townsville.

The vehicles are part of Nissan’s sponsorship of K’s 4 Country Kids which is commited to supporting patients and their families living with leukaemias, lymphomas, myeloma and related blood disorders.

Nissan’s State Manager, Jeff Bennett

Life membership awardThe Leukaemia Foundation recently acknowledged the commitment and generosity of philanthropists Tim and Gina Fairfax, who have been long term supporters of the Leukaemia Foundation of Queensland.

At a function held on 20 April at the Clem Jones - Sunland Leukaemia Foundation Village and attended by patients and their families, Mr and Mrs Fairfax were presented with their life membership awards by the President of the Foundation, Mrs Beverley Mirolo, OAM.

Tim and Gina Fairfax have made a significant difference to the lives of blood cancer patients and their families during their association with the Leukaemia Foundation. They are particularly passionate about the Foundation’s Mission to Care for regional patients, who often require home-away-from-home accommodation and financial assistance while they undergo lifesaving medical treatment.

Leukaemia Foundation to benefit race day The Leukaemia Foundation of Queensland is proud to once again be a beneficiary of the Tattersall’s Racing Club Winter Stakes Race Day at Eagle Farm racecourse on Saturday, 26 June 2010.

Punters on the day can enter the Leukaemia Foundation’s Pin & Win competition by buying a $5 pin which will put them in the draw to win a trip for two to the 2010 Melbourne Cup including return airfares, two nights’ accommodation and entry into Flemington racecourse provided by Total Sports Travel.

Race-goers can enjoy the traditional Fashions on the Field competition which will offer fantastic prizes along with free family activities and $1 million in racing prize money to be won including the $500,000 Group 1 Winter Stakes.

For more details about the Pin & Win competition contact Fleur Liversidge at the Leukaemia Foundation on 3318 4436.

Ten News at Five Weather Presenter, Amanda McLeay, is on board as the face of the Leukaemia Foundation’s Pin & Win competition.

LFQ President Beverley Mirolo OAM presents Tim and Gina Fairfax with life membership

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said, “I’m proud to announce this partnership and thrilled to be working with a state wide charity which is directly benefitting rural and remote Queenslanders.”

Leukaemia Foundation of Queensland CEO, Peter Johnstone, said Nissan’s support for K’s 4 Country Kids and the Leukaemia Foundation will make an enormous difference to the funds raised at this annual bike ride, as well as allowing more patients and families access to free transport while they undergo treatment.

See the back page for details of the Nissan K’s 4 Country Kids Art Union.

Nissan gives Leukaemia Foundation a boost

In Townsville: Peter Johnstone receives patient support vehicle from Parry Nissan’s General Manager, John Doolan

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Open your doors to care and cureOver 30,000 volunteers will soon be knocking on Queensland doors to raise $1.2 million during the Leukaemia Foundation’s Doorknock Appeal to be held 17 - 30 July 2010.

Please give generously!

Light the Night 2010The Leukaemia Foundation’s Light the Night will be extended this year to include ten locations as walkers once again remember, celebrate and give hope to those touched by leukaemias, lymphomas, myeloma and related blood disorders.

Light the Night will be held on Thursday, 7 October at its newest locations, Caboolture, Rockhampton and Port Douglas, along with the eight previous locations, Brisbane, Cairns, Townsville, Mackay, Bundaberg, Mt Isa, Gold Coast and Toowoomba.

Since the event began in 2008, thousands of people have gathered around the state including families, friends, co-workers, health professionals and supporters, to take the opportunity to help the Leukaemia Foundation create awareness of the impact these diseases have on the community and the services offered to families in need.

Leukaemia Foundation of Queensland CEO, Peter Johnstone said, “Light the Night was an opportunity to bring together those in the community who have gone through the difficult journey that comes with a blood disorder or cancer diagnosis and a chance for their family, friends, co-workers and community to show their love and support.”

To register for the event, please visit www.lightthenight.org.au or phone 1800 500 088.

National volunteers week 10 – 16 MayThe Foundation honours the vital role volunteers play in a number of areas including administration, patient support, packing and selling merchandise and assisting staff at a variety of fundraising events.

Volunteers come from all walks of life. If fact, the Foundation’s youngest volunteer is 14 and the oldest 94! Anyone who has some spare time and wants to help can assist us in some way.

Jackie Saunders of Annerley has been volunteering for the Foundation since 2004 after deciding to give back to the community in her semi-retirement.

“I chose the Leukaemia Foundation because I could identify with the work that the Foundation does in providing care and support for patients and their families in need,” Jackie said.

If you would like to offer your time please phone 1800 620 420 or check out the website www.leukaemia.org.au for ideas on how you can contribute.

For more information on volunteering please call Wayne Gaddes on 3318 4477.

It’s a beautiful thing to be U.G.L.Y!Community minded local hotels and their bar staff are currently battling it out to raise much needed funds for the Leukaemia Foundation in the U.G.L.Y. Bartender of the Year competition.

The competition began on 1 May and the winner will be announced on 17 June.Leukaemia Foundation of Queensland CEO, Peter Johnstone, said the U.G.L.Y. (Understanding, Generous, Likeable You) Bartender of the Year competition was a fun and challenging promotion that raised valuable funds and awareness for a serious cause.

To be eligible to win, participants must bank at least $1,000. The bartender who raises the most money will be crowned U.G.L.Y. Bartender of the Year and will be awarded a trophy and winner’s t-shirt.

The Leukaemia Foundation will also host a celebration event to the value of $1,500 at the winner’s pub for the exclusive enjoyment of the winner and regulars who generously supported their fundraising efforts.

The winner of the event will be published in the next edition of the Carer.

Our Vision to Cure and Mission to Care.

The Leukaemia Foundation of Queensland is a not for profit organisation focused on the care and support of patients and their families living with leukaemias, lymphomas, myeloma and related blood disorders.

The Foundation does this by providing counselling, accommodation, transportation and practical assistance for patients and their families. The Leukaemia Foundation also funds research into cures and better treatments for leukaemia and the related blood disorders.

The Leukaemia Foundation receives no direct ongoing government funding, and relies on the continuous support of individuals and corporate partners to expand its services.

To find out more about the work of the Leukaemia Foundation of Queensland and how you can help, phone 1800 620 420 or visit the Foundation’s website: www.leukaemia.org.au

GPO Box 9954Brisbane QLD 4001ph: 1800 620 420

Support Services seminars 2010The following educational seminars will be held at ESA Village, South Brisbane. For more information or to make a booking phone 07 3840 3844.

Doorknock Appeal Statewide 17-30 July

Light the Night Statewide 7 October

IGA Car Rally Cairns, Mackay, Sunshine Coast 28-29 August

Nissan K’s 4 Country Kids 20-22 August

Diary Dates 2010

Living well with Grief Seminars

Healing Hearts workshop

Saturday, 26 June, 10.30am-12.30pmSaturday, 14 August, 10.30am-12.30pmMonday, 13 December, 10.30am-12.30pm*Held at Clem Jones – Sunland Leukaemia Foundation Village, Nathan

Grief support services brunch

Saturday, 17 July, 10.30am–1.30pmSaturday, 23 October, 10.30am–1.30pmSaturday, 11 December 10.30am–1.30pm

Living Well with Grief

6 week courseTuesday mornings, 10.30am14 September – 9 October 2010

Toolshed for Men’s Grief

Saturday, 24 July, 9am-3pm

Celebration of Life

Sunday, 6 June , 10.30am-1pm

For more information about these events please call 1800 620 420

Disease Seminars

Lymphoma

Wednesday, 9 June, 11.30amWednesday, 15 September 1.30pmWednesday, 17 November 11.30am

Myeloma

Tuesday, 13 July, 11.30amTuesday, 7 September, 11amTuesday, 16 November, 11am

Amyloidosis

Tuesday, 17 August, 12pm Tuesday, 23 November 12pm

Disease Seminars

Leukaemia/MDS Seminars

Tuesday, 6 July, 11.30am (AML)Wednesday, 14 July, 11.30am (CLL)Wednesday, 6 October, 10am (AML, ALL)Wednesday, 8 September, 11.30am

Patient and Carer Support Seminars

Taking Control Seminars

Saturday, 3 July, 9am-3pm,

Caring for the Carer

4 week course. Thursday mornings22 & 29 July, 5 & 12 August4,11,18,25 November

Look Good…Feel Better

Wednesday, 7 July, 10amWednesday, 25 August, 10am

Nuts and bolts of allogeneic transplants

Thursday, 5 August, 3.00pm

Getting your life in order following a diagnosis

Tuesday, 10 August, 11.30am

Win a NISSAN DUALIS Ti 4x2 Auto

Win a Nissan Dualis Ti 4x2 Auto (valued at $35,286 (Driveaway) in the Leukaemia Foundation of Queensland Category 3 Art Union (licence number 111423) proudly sponsored by the 2010 Nissan K’s 4 Country Kids charity bike ride. Purchase your tickets now by calling Cassandra on (07) 3318 4453.