Newsletter

Issue 15

February 2015

Our Vision

“100% survival for kids with cancer”

Editor – PDG John Thorpe 03 5341 3003 (M) 0418 518 850 In This Issue

Fellow Lions,

Lioness and

LEOs

Message from the Chairman Rethinking how

Australians fund

childhood cancer

research Page 2

Corowa Leos show

the way to raise funds Page 5

Children’s Cancer Centre

Foundation hosts ALCCRF’s

visit to Melbourne Page 3

Ava– our “Little Star of Hope”

Page 4

The immediate future looks

exciting as we continue our quest

to achieve 100% survival of kids

diagnosed with cancer.

During the last couple of months

ALCCRF has been developing a new

website. This has been a very time

consuming task but it is now “live”.

If you haven ’t had the

opportunity, please have a look –

http://alccrf.lions.org.au

we are thrilled about the design

and content and hope you feel

the same. Hopefully you will find

all the information and resources

to enable you to continue your

support of ALCCRF For some time we have been

talking about the work we have

been doing with the Macquarie

Graduate School of Management

to determine the best way

forward to support childhood can-

cer research in Australia.

This report was launched at a

special function in Sydney, on 30

January this year to a wide group

o f r e s e a r c h e r s a n d

philanthropists. The report and

accompanying DVD entitled

“Donors without Borders” is now

being widely circulated. A further

article is in this newsletter. (P 2)

One of the main findings of the

MGSM report is that a collabora-

tive approach to both research

and funding is the best way for-

ward. Trustees will consider

working with other groups when

we consider future proposals to

fund the best clinical research

this country has to offer

Research is such a finite thing

that you never know what the

chance of success will be. One of

the leading researchers in this

country recently said that

sometimes the result of a

research trial can be “finding out

what doesn’t work”. One of the

trials ALCCRF is currently fund-

ing is research using a drug,

DFMO, and we were excited to

recently learn that there have

been significant signs Cont. P 2

 

Continued from Page 1

that this drug has had some very positive results in one area of treatment. ALCCRF has been able to fund this trial due to the tremendous support we are receiving from Lions Clubs across Australia. Whilst these are all positives we still need your support to give every child the opportunity of a healthy life. One really important way your Club can support ALCCRF is to participate in the “Biggest Barbecue” which is a fundraiser held in March/April each year. We simply ask each Club to conduct a BBQ (or 2 or 3) and donate the proceeds to ALCCRF. Documentation will shortly be sent to all Clubs seeking their support for 2015. If each Club supports the Foundation in this way we make a major step to our goal of raising $1 million per year. ALCCRF has become a very significant “player” in the support of childhood cancer in Australia and this has been achieved through the very generous and positive support from Clubs and communities. Your Trustees were given the task of 100% survival of kids diagnosed with cancer and we are working hard to achieve this goal.

We can do it but we need your Support.

PCC Bob Buckley Chairman ALCCRF  

 

 

 

 

 

 

 

Rethinking how Australians fund childhood cancer research

MGSM and the Australian Lions Childhood Cancer Research Foundation (ALCCRF) have launched a comprehensive study into childhood cancer research and the role of philanthropy in Australia to overcome the critical funding challenges facing researchers in the battle against this disease. The “Donors without borders: Rethinking Childhood Cancer Research Funding in Australia” report engaged key opinion leaders in childhood cancer research, philanthropy, the medical and health sciences and government across the country to find better ways of combatting childhood cancer both in Australia and around the world. It found that new thinking is required about how we approach childhood cancer research, given the rarity of childhood cancer, the new knowledge about ‘cancer’, the high costs of research and the extensive development time required for new therapies. “Our research found that ‘health and medical research is from Mars and philanthropy is from Venus’,” said Brenda Santiago, Project Director. It found that while it is clear that investing in childhood cancer research is a gamble, increased collaboration is able to dramatically improve the odds.” “The report highlights the importance of and need for different forms of collaboration across all borders in order to help children ‘slay the dragon’ and achieve 100% survival rates for children with cancer,” said Dr Joe Collins, Founding Chair and Trustee, ALCCRF. Download the Donors without Borders documents and to find out more from the ALCCRF Website http://alccrf.lions.org.au

MGSM DONORS WITHOUT BORDERS

On the 12th December 2014, the Children’s Cancer Centre Foundation (CCCF) hosted ALCCRF’s Chairman Bob Buckley and Victorian Trustee John Thorpe, and their wives Cheryl and Maureen, District V1-4 First Vice District Governor, for a visit to Melbourne. Aileen Boyd-Squires, CEO of CCCF, introduced them to key individuals at The Royal Children’s Hospital (RCH) and Murdoch Childrens Research Institute (MRCI), who share the common aim of finding a cure for childhood cancer. ALCCRF and CCCF met with A/Prof Michael Sullivan, Head of Solid Tumours and Neuro-Oncology and Mary McGowan, Director of the CCCF and Community Liaison Manager at RCH. A/Prof Sullivan presented the outcomes of his ALCCRF supported research into solid tumours and brain tumours. ALCCRF has been supporting A/Prof Sullivan’s role since November 2013.

Over the past year A/Prof Sullivan has built a portfolio of new international cancer clinical trials, including two where he is the international lead investigator.

The group also met with Professor John Bateman, Theme Director Cell Biology, Development & Disease and A/Professor Paul Ekert, Head of Molecular Diagnostics. After Professor Bateman elaborated the Institute’s strategy for building cancer research in collaboration with the Children’s Cancer Centre Foundation, Bob presented a high level overview of ALCCRF’s commissioned Macquarie Graduate School of Management report “Donors Without Barriers: Rethinking Childhood Cancer Research Funding”. The report, developed to prioritise funding of childhood cancer research, led to an informative discussion on the future direction of childhood cancer research in Australia. The visit also provided ALCCRF with an

opportunity tour the Children’s Cancer Centre laboratory, the construction of which was funded by the Children’s Cancer Centre Foundation in 2004 as part of a $22 m rebuild of the cancer ward and co-located research laboratory, and also the Ian Potter Centre for Genomics and Personalised Medicine.

Children’s Cancer Centre Foundation hosts ALCCRF’s visit to Melbourne

Photo (L to R): Aileen Boyd-Squires, CEO of the Children’s Cancer Centre Foundation; Bob Buckley, ALCCRF Chairman; Cheryl Buckley; A/Prof Paul Ekert, Head of Molecular Diagnostics; John Thorpe, ALCCRF Victorian Trustee; Maureen Thorpe, District V1-4 First Vice District Governor.

Ava is the exact definition of what a "Normal" 4 year old girl should be, she can be cheeky, funny, infuriating and adorable within the space of 2 minutes. She is constantly talking, asking questions and asking for people to play with her. She listens intently to her Kindergarten teachers, her swimming teacher and her football coach, yet when it comes to Mummy and Daddy trying to

teach her something she has no interest! She can take 45 minutes to eat her dinner, then 2 minutes to eat her dessert (much to the frustration of her Mummy).

She LOVES Frozen and Disney and gets way, way too excited about Easter, Halloween and Christmas....she has a great imagination, loves Arts and Crafts and can be smart beyond her years... Ava has great relationships with her friends and

you can see genuine affection when she is with her closest pals and when they are together - Ava is often the one who gets up to mischief and already understand the power of a little cheeky smile that gets her out of trouble

She has little to no recollection of being ill, or what that meant. But when she goes back for check-ups she charms Sue (our doctor) and takes it in her stride.

Most of all, she is a happy little four year old, who makes us smile each and every single day

Ava with her new baby brother

Ava by Mum Jenny Bell  

With the assistance of Sydney Children’s Hospital Foundation, Ava’s parents have agreed that the Foundation can stay in contact with Ava for the next few years and that she can be featured on our website and other promotional material as our

“Little Star of Hope”

One again the Leo's have shown what can be done with a little effort,    raising $1074.75 Wow!!!!!  

The Leo Club of Corowa (V6) held a “Coins for Kids” Fundraise to support ALCCF – in just a few hours, this great bunch of young people collected $1,074.75

Thank you Leos!!!!!

Sunday October 19th saw the seventeenth running, in its current format, of the iconic Davistown Putt Putt Regatta & Wooden Boat Festival.

The genesis of the Event was the social and competitive gathering of “Putt Putts”, as they are now known, by the early builders, residents and boating enthusiasts of the district. Regattas were often held at Davistown in the early 1900’s. Challenges between boat owners/builders were designed to determine who had the fastest putt-putt, or who could row the quickest. In addition, on-shore celebrations were held with music and fun for the whole family.

Many putt-putt boats are still in use on Brisbane Water today. In the Davistown area over 30 of the classics can be seen on their moorings. The Davistown area, in particular, and much of the Brisbane Water area of the NSW Central Coast, had a strong boat building industry in years gone by and the Putt Regatta & Wooden Boat Festival is a celebration of that history.

Putt-Putt boats usually range in length from 14-18 feet and are powered by either single or twin cylinder 2 to 10 hp Blaxland/Chapman, Simplex or Clae inboard petrol driven engines all of which make the vary familiar “putt-putt-putt” exhaust sound.

Reintroduced as an annual event via a quorum of enthusiasts in 1996/1997, the Regatta is now one of the principal events on the Gosford City calendar.

The Lions Club of Green Point Avoca (N3) was asked in 2011 to take over the running of the Davistown Putt Putt Regatta & Wooden Boat Festival. The 2012 Regatta was the first under the organisation of the Lions Club and the Club has gone on to conduct three very successful events, attracting in excess of 12,000 people in 2014. For the past two years, Green

Point Avoca Lions Club has nominated the Australian Lions Childhood Cancer Research Foundation as the principal beneficiary of funds raised at the Davistown Putt Putt Regatta & Wooden Boat Festival, and will continue to do so into 2015.

The Davistown Putt Putt Regatta & Wooden Boat Festival attracts a number of quality putt putts traveling from as far as Queensland and the ACT. The

10th Anniversary event in 2007 attracted a field of over 100 Putt Putts.

It is out of the respect and knowledge of the enthusiasts, who form the heart of the annual event, that the charter of the Davistown Putt Putt Regatta & Wooden Boat Festival is drawn.

“To promote an annual event to showcase Putt Putt engineering and timber boat skills in a family friendly, free to the public Festival, promoting and drawing on the camaraderie among Putt Putt enthusiasts and timber boat owners generally. "

The structure of the Davistown Putt Putt Regatta & Wooden Boat Festival evolves between Putt Putt enthusiasts together with the support and “man power on the day”. In addition to the members of the Lions Club of Green Point Avoca there are many able volunteers helping to ensure that the Regatta is an enjoyable day for all.

Davistown Putt Putt Regatta & Wooden Boat Festival

 

 

Christmas Gift Wrapping for cancer research

The Lions Club of Raymond Terrace (N3) conducted a Christmas wrapping project where the profits have been committed to the Foundation Club members wrapped gifts daily from December 13th until Xmas Eve Raymond Terrace Market Place were the sponsors and donated all the wrapping materials The ladies in the photo are from the left Lions Lady Joy Hawkins and Lion Julie Brell. Julie was the organiser of the wrapping project.