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From 1 May 2015 our new address will be 2/451 Lyons Road West, Five Dock, NSW 2046.
New NF1 Clinic Opens in Victoria
PLEASE DONATETODAY!
PLEASE CONTACTLISA CHENG, CEO.
IF YOU WOULD LIKE TO MAKE A DONATION OR LEAVE A BEQUEST TO THE CHILDREN’S
TUMOUR FOUNDATION
P: +61 2 9719 3356
F: +61 2 9719 3575
www.ctf.org.au
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The Royal Children’s Hospital in Melbourne (RCH), together with the Victorian Clinical Genetics Service (VCGS), has launched a new paediatric Neurofibromatosis Clinic. The service, which opened in late January, will be based at the Royal Children’s Hospital, and is a marked development in the move towards extending the availability and accessibility of NF support and services to more Australian families affected by a diagnosis of NF.
CTF was delighted to officially launch the new paediatric NF1 service at our first Victorian Family and Information Day held on Saturday 7 February at the Murdoch Children’s Research Institute. Close to 150 people attended the event, including a number of children who were preoccupied with balloon animals while the adults tuned in to guest speakers Professor Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis at Guy’s and St Thomas’ NHS Foundation
Trust in London, Dr Gaby Dabscheck, Neurologist, and Gemma Brett, Genetic Counsellor, both from the new NF1 Clinic at the Hospital.
Professor Ferner guided the audience through a presentation on the diagnosis of NF1 and the issues that can arise in tackling the disease, inviting audience members to participate through a Q&A and discussion. Thirteen year-old Mitchell Fenton provided an inspirational highlight to the presentation as he took to the floor with Professor Ferner and openly discussed his pseudoarthrosis. Others discussed the need for greater advocacy due to a noticeable lack of school and services support funding, as well as the lack of adult services and the cosmetic impact of neurofibromas.
The Victorian Information Day and launch of the new paediatric NF1 Clinic in Melbourne have provided a positive and promising start to the year for NF
support and services in Australia, and the Foundation is looking forward to bringing this to NF communities in each state nationwide.
To obtain an appointment at the new paediatric NF1 Clinic in Melbourne please contact your GP or specialist and request a referral to the NF Clinic be sent to Victorian Clinical Genetics Service (VCGS) via fax on 03 8341 6390. Interstate referrals will be accepted but must contain the patient’s Medicare Number.
If you would like your child’s ongoing management to be coordinated within the clinic, it is recommended that you request an ‘indefinite’ referral from your GP.
Upcoming Events
16 May – Dining with Daisies Gala Dinner, Sydney. Dockside Pavilion, Darling Harbour.
To book contact Molly Umble on 02 9719 3356 or email [email protected].
Issue 126 – Autumn 2015
ProfileNews & Events
Meet an NF Hero
The event, adopted from the US fundraiser of the same name launched in 2010, combines an underwear run and party and benefits the Children’s Tumour Foundation of Australia, raising funds for research into NF. This year Australia joined 35 US cities for the Valentine’s Day event, raising much needed awareness and funds for NF. Over 450 undie runners across Australia’s three cities helped raise more than $231,000 for NF research in Australia, offering children, adults and families affected by NF hope for a better future.
Cupid’s Undie Run was presented in 2015 by CTF founding sponsor Radio Rentals, gold sponsor aussieBum who provided custom men’s underwear for the event and silver sponsor Midway Metals. Trainers from Jetts Fitness Australia helped add some fun to the
run with their high-energy sessions in the Sydney and Gold Coast events, while OVI Hydration kept runners cool with their range of fruit drinks as official sponsor of the Cupid’s Undie Run Guinness World Record Attempt for The Most People in One Place in Their Undies on the Gold Coast, which remains unbroken at 2,270 people currently held by Utah, USA.
Radio Rentals also provided a selection of the latest Apple products for the Cupid’s Undie Run raffle held in each city, including an iPhone 6, while leading electric bicycle company SmartMotion rewarded each city’s highest fundraiser with a quality bike each valued at $2000. Congratulations and thank you to top fundraisers Libby Neville, Donna Parker, and Oliver Smith, as well as the highest fundraising team in Australia, The Barney Army, who
nailed it again in 2015 raising an incredible $46,460.
Cupid’s Undie Run is a fun run putting the hilarity in charity to bring some hope for the future for the people living with NF. To find out more or to get involved visit www.cupidsundierun.com.au.
Thank you to the participants, donors, volunteers, sponsors, media partners, and everyone who was involved in making Cupid’s Undie Run happen this year: Radio Rentals; aussieBum; Midway Metals; Acland Street Village; St Kilda Sea Baths; Beachcomber Cafe; SmartMotion; Bar100; Jetts Fitness NSW; Jetts Fitness QLD; OVI Hydration; 102.9 Hot Tomato; JOY 94.9; KIIS 1065; Andrew Reid, MWC Media; Everyday Hero.
At 16 years old Hannah was preparing for one of the biggest days of her life – the Debutante Ball. Elaborate gowns, grand ballrooms, and an official introduction to society as a new “adult” – the Debutante Ball, or “Deb”, sounds like a teenage girl’s dream. It was for Hannah, and she found the perfect dress to wear, but she was conscious about two growths she had on her back and shoulder. Her excitement was overshadowed after a trip to the doctor to have the growths removed revealed a life-changing diagnosis of NF1.
Having no family history of NF, the diagnosis came as a shock to Hannah and her family.
“I was 16 and did not know what this condition entailed and what was ahead for me,” recalls Hannah, now 25.
“It was hard to cope not knowing, and trying to understand the condition was also hard. This could happen to anybody, and by chance it happened to me. I cannot imagine what it was like for my parents.”
Diagnosed at such a sensitive and pivotal age, the first of Hannah’s many challenges was learning to accept and speak openly about her condition.
“When I was first diagnosed I did not really want anybody to know or tell anyone about my condition as I did not want to be treated differently or like I had something wrong with me,” says Hannah.
“It is hard telling people that you have a condition and not knowing how they will take it. Will they still want to know me? Will they run the other direction?”
With time, maturity, and the support of her parents Garry and Leanne, came a change in attitude for Hannah.
Although unnerving that it remains to
be seen how and when her condition may progress, Hannah is determined to move forward with a positive and proactive take on life.
“I tell people that I have NF but explain that I am not totally different to everyone else; that I just have tumours that grow inside and outside of my body which I need to get monitored, and that I just need to make sure that I monitor and take care of myself,” says Hannah.
In addition to her tumours, including plexiform neurofibromas on her mouth and finger, and a tumour on the base of her spine situated near her right kidney, Hannah has a host of other NF symptoms such as cafe-au-lait spots and Lisch nodules, and needs to be monitored for scoliosis and an optic glioma behind her right eye. She also battles vasovagal syncope which causes low blood pressure and occasional black outs and loss of consciousness.
“I know I will probably always have some ongoing issues arising from my NF but I try not to let them stop me from achieving what I want out of life,” says Hannah.
Amid her battles, Hannah’s drive and tenacity have paved the way for milestone achievements and a promising future. At 25 Hannah has completed a combined bachelor’s degree in Law and Business (Accounting) at Victoria University and is currently attending the College of Law in the hopes of gaining a practising certificate and being admitted to the Supreme Court of Victoria.
“It does feel good to see my specialist or doctor shocked or proud after telling them what I’ve accomplished, since NF typically comes with learning difficulties,” says Hannah.
“It is hard, but I try my hardest and try not to give up, even though sometimes I want to.”
Hannah is looking forward to completing her studies and exploring career paths in forensics, insolvency or risk management where she can utilise both aspects of her degree.
“I count myself as one of the lucky ones,” admits Hannah.
“I might have NF, but I don’t let that stop me from aiming high and making the most out of every day, because I know the best is yet to come.”
Become an NF Hero Want to share your story? Be an inspiration for others. Help raise NF awareness and become an NF Hero by sharing your NF story. Contact Noeleene Yap on 02 9719 3356 or [email protected].
For the third consecutive year Valentine’s Day became synonymous with NF as Cupid’s Undie Run returned to Sydney and Melbourne and welcomed new city Gold Coast.
Cupid’s Undie Run Raises $231,000 in 2015
“I count myself as one of the lucky ones,”
admits Hannah.
Hannah
Support
Community News
Manila Jocks DashKathryn Foster and her group of friends based in Manila, the capital city of the Philippines, formed the Manila Jocks Dash Crew in February to raise funds for CTF. More than 20 people participated in the casual run around Manila’s exclusive Power Plant Mall. While some braved the streets and strict ‘decency’ laws in their jocks, others stuck to their pyjamas for the run.
The Manila Jocks Dash offered plenty of looks and laughs while raising close to $6500 for CTF.
Long Table of the Season at Terroir SAA group in South Australia’s Clare Valley hosted its first Long Table of the Season for CTF in February. Held in the historic town of Auburn at the Terroir Auburn restaurant, with the support of Executive Chef and co-owner Dan Moss, the event was launched by Dianne Tilley to help raise awareness and raise funds for research after a much-loved toddler in her family was recently diagnosed with NF.
The event was held on Friday 6 February and welcomed 26 guests to a night of fine dining and fundraising. Guests were treated to a gourmet three-course meal, matched with superb wines generously donated by Pikes Vintners and Taylors Wine, and were quick to show their support as they participated in the Silent Auction to help raise $1650 for CTF.
The Clare Valley Long Table of the Season is the first of many events Dianne and Dan hope to host in support of CTF and NF research.
For further details or to get involved contact Dianne Tilley through their Facebook page: http://bit.ly/clarevalleylongtable
Host an NF WalkGet active and get involved this NF Awareness Month by hosting an NF Walk in your city. CTF is now taking applications for 2015 NF Walks. This May the NF community will be hosting NF Walks throughout Australia to help raise funds and awareness about NF.
The NF Walk is a national fundraising campaign encouraging members of the NF community to organise a walk in their local areas to raise awareness and funds to conquer NF. NF walk brings together families, friends and neighbours in May, NF awareness month, for a fun and memorable event.
With your help we can make this year’s NF Walk bigger and better than ever! Our goal is to expand to 10 walks and raise $50,000. Expanding the NF Walk program will allow us to build more awareness throughout Australia and raise more funds for research and support.
We can’t accomplish this goal without your vital support. Whether you have NF, know someone who does, or just want to show support, join an NF Walk in your community.
Register your NF Walk or any other event you’re hosting for NF Awareness Month today! Contact Molly Umble on 02 9719 3356 or email [email protected] to start an NF Walk in your community this May.
Together, we will conquer NF.
Recoveriescorp Staff Interact
CTF corporate sponsor, Recoveriecorp, officially launched their Corporate Social Responsibility (CSR) Program in February. Recoveriescorp invited representatives from all three of their CSR partners to attend the official launch and provide insight into their organisations and how they aim to make a difference in the community, including CTF Victorian State Committee member Hannah Moffatt.
Although diagnosed with NF at 16, Hannah has only been able to talk openly about her condition in the last year, and is now happy to be involved with organisations like Recoveriescorp to help raise awareness about NF.
Thank you Recoveriescorp for your support, for inviting us to discuss NF, and for allowing us to share our work with your organisation.
Hiking for NFThis February Sean Moran took to the Hong Kong Trail on Hong Kong Island for the Green Power Hike, an annual fundraising walkathon encouraging protection, appreciation and respect of nature. The 50km trail is longer than an average marathon and included over 5km of ascending and descending.
As part of the challenge Sean chose to raise funds for CTF after hearing that his good friend’s 9 year-old daughter with NF1 was recently diagnosed with an optic glioma.
Sean completed the run in a time of 6 hours and 18 minutes, raised $2000 for his efforts, and donated an additional $500 to help fund NF support and services. His employer has also agreed to match his total funds raised!
When I came to Australia in 2011, I was fortunate to have the opportunity to work as a researcher with Professor Kathryn North and Dr. Belinda Barton at the Children’s Hospital at Westmead in Sydney. The focus of my research was the health and wellbeing of adults with NF1. I think it’s fair to say that there is not enough research in this area. Some of you may have taken part in this study, as we recruited adults from the CTF website, or you may have taken part when your child attended the neurogenetics clinic at the Children’s Hospital at Westmead. To everyone who took part, I wish to thank you sincerely for giving your time to take part.
We know that the complications of NF1 are widespread, unpredictable and variable and each person’s experience of the condition is unique. However, few studies have looked at how NF1 affects adults from their point of view. Our study aimed to find out how NF1 affects the health and wellbeing of Australian adults. I interviewed sixty people aged between 18 and 40 years of age, some were mildly affected and others had more severe complications of NF1. We asked people to tell us about their life experiences in their own words, and to talk about the ways in which NF1
impacted upon their life and health.
The results of our study showed there were 5 major ways that NF1 affected adults. These were (1) the cosmetic visible signs of NF1, (2) learning difficulties, (3) concerns about the risks of having children with NF1, (4) worries about the future and the uncertainty of NF1, and (5) pain. I do not need to tell you of the many ways NF1 can affect a person, so we asked people if there were aspects of NF1 that bothered them more than others. We found that the cosmetic features of NF1, particularly the neurofibromas that grow on the skin, were the number one concern for adults, followed by learning difficulties. Importantly, mildly affected adults shared many of the same concerns as those more severely affected.
From a personal point of view, I was struck deeply by adults’ experiences in two particular areas. First, the negative school experiences of some older adults. It was upsetting to hear the way in which some people had been treated as children in the school system, often made to feel stupid or lazy in the days before there was an understanding of the way NF1 affects learning. Some adults suffered long-term effects of
those negative experiences. It is good to know that for today’s children, there is a greater awareness in schools of the effects of NF1 on learning. The second thing that struck me was the ignorance in society about NF1, and the way in which complete strangers felt they could go up to a person with NF1 and comment on their appearance or that of their child.
I am delighted to tell you that our study has been published in a medical journal. We hope the findings will inform doctors and other health workers as they see families in clinics, to understand that NF1 does not only have physical effects, but also emotional and learning effects. Our study is important because it challenges the belief that just because someone has more severe or visible effects of NF1, that automatically has a greater impact on life than someone who is mildly affected. In this study we showed that mildly affected adults were just as affected by NF1 as those people more severely affected.
Hilda Crawford March 2015
New Local Support ContactsWelcome to Julia Szulerowski and Lana Hanssens who have joined CTF’s network of local contacts and support groups. Julia and Lana join five other local contacts and four NF support groups currently offering their time and assistance to provide support to individuals, parents and families around Australia who are impacted by NF. Julia will be the key contact for communities in the South Coast and Illawarra area of New South Wales, while Lana will be available for contact
with individuals and families living on the border of New South Wales and Victoria in Albury Wodonga region.
The local support groups and contacts exist to provide peer support and networking to families, individuals and carers affected by NF.
Each group operates differently and activities may range from regular meetings to picnics and family days.
To contact and meet your local NF community get in touch with your local support contact today. For details turn
to the Connect section of this newsletter or visit www.ctf.org.au/local-support.
If you would like to start a support group or be a local support contact for individuals, families and carers living with NF in your area please contact Sally Maspero, National Support Coordinator, on 02 9819 7349 or [email protected].
Needs Assessment Survey - An UpdateThe CTF Needs Assessment Survey has been launched and distributed to members and supporters of the Foundation. The survey is designed to highlight the various needs and gaps in services for the NF community in Australia. The information gathered through the survey will help CTF outline the areas requiring additional attention and support in an effort to help shape and inform the information and services provided by CTF.
The Needs Assessment Survey is an initiative to further improve the work of CTF and to ensure that the organisation is working towards fulfilling and addressing the primary needs and concerns of individuals, families and carers affected by NF.
The main survey was distributed to over 900 people at the end of February and we are currently in the process of collecting final information before we proceed to schedule follow-up discussions with those who have expressed an interest.
Following this we will review the responses which will be used to prepare recommendations on new and revised support services and activities for the NF community. Thank you to those who have responded. We appreciate your feedback and will take all comments into consideration. We would like to acknowledge the assistance given to this project by long standing member of CTF, Ms Rosemary Pynor. Rosemary is a psychologist with experience in survey development, analysis and report writing.
CTF members Katrina Ball, Julia Szulerowski and Cathy Hill attended a Neurodegenerative and Neuromuscular Conditions Working Party workshop hosted by the NSW Health Agency for Clinical Innovation on 5 March 2015 in North Sydney. The workshop discussed a range of issues affecting adults with neurodegenerative and neuromuscular conditions including: coordination of care, timely and appropriate access to equipment, palliative care services, workforce capacity, access to specialist services and clinics, clinical pathways and guidelines, transition care, respiratory support, carers, and the needs of the aboriginal and Torres Strait Islander population.
Occasionally CTF will ask members to act as consumer representatives to participate in various activities around the country, and to speak on behalf of the NF community as ‘experts’ for those who do not have the condition and therefore may not have the first-hand experience and understanding of the key issues and needs of NF patients. Katrina, Julia and Cathy attended to provide input into the discussion and development of ways to improve the care for adults with neurofibromatosis who live in NSW.
Katrina, joined by her mother, gave a terrific presentation about the effects of NF1 on her and her family, and the serious issues she is facing now. After growing up in Moree, Katrina now lives in Sydney to be closer to medical care. Katrina’s mother continues to live in Moree and both highlighted the needs of rural communities and aboriginal people who have NF. Dr Mimi Berman elaborated on the difficulties in current NF1 management and the need for improvement in the ongoing management of NF needs.
Julia travelled from Kiama, south of Sydney, and provided some great ideas based on her and her daughter’s journey through the health system as children and now adults with NF1, while Cathy travelled from Yass with her husband, Michael, to represent the NF2 community.
Cathy has no hearing and spends most of her days in a wheelchair, but she is known for her great sense of humour! Cathy speaks Auslan (sign language) and with her Auditory Brainstem Implant (ABI) is able to lip read. She was able to participate in the workshop by way of a speech to text relay service and gave everyone an insight into the world of
NF2 and the many issues that need addressing, while Michael offered enlightening contributions from a carer’s perspective.
“I was diagnosed with NF2 at 19 years,” says Cathy. “Life has not gone along the path I thought it would, but it is MY life. It’s up to me, not NF2, to make it as fun and fulfilling as I want. It interferes, but it won’t stop me.”
Find out more about Auslan and learn some ‘words’ on www.auslan.org.au.
Thank you to Katrina, Julia and Cathy for volunteering their time and experiences at the workshop and as consumer representatives for CTF and the NF community.
SupportResearch
Australian Adults’ Life Experiences of NF1
CTF Members Attend Neurodegenerative and Neuromuscular Conditions Workshop
CTF Members Attend Neurodegenerative and Neuromuscular Conditions Workshop
ACT Ruth O’Brien Phone 0403 076 014 Email [email protected]
NSW – Mid-North Coast Cheryl Maurer Phone 0437 858 232 Email [email protected]
NSW – Newcastle Vicki Brazier Email [email protected]
NSW – Northern Gwen Butler Phone 02 6653 2403 or 0428 521 862 Email [email protected]
NSW – South Coast/Illawarra Julia Szulerowski Phone 02 4233 2449 or 0401 860 484 Email [email protected]
QLD – Townsville Christine James Phone 0408 070 834 Email [email protected] Facebook: Neurofibromatosis NF Townsville QLD
VIC – Albury Wodonga Lana Hanssens Phone 0408 166 822 Email [email protected]
VIC – Gippsland Eddie Beulke (Gippsland Neurofibromatosis Support Group) Phone 03 5134 1070 Email [email protected]
TAS Stan Mead PO Box 234 Sorell TAS 7172
SA Dianne Shipton (NF Association of South Australia) PO Box 867 Marleston SA 5033 Phone 08 8293 2770 Email [email protected]
WA David Freedman (President NF Association of Western Australia) Email [email protected] Facebook Neurofibromatosis Perth Western Australia
Get in touch with your NF community. Find your local NF contact below. To update your contact details or volunteer as an NF support contact for your area please contact Sally Maspero on 02 9819 7349 or email [email protected].
Dining with Daisies Gala Dinner NSW The Foundation’s major annual fundraising event returns to Sydney in 2015 at the Dockside Pavilion on Sydney’s iconic Darling Harbour. The event hosts up to 300 guests from some of Australia’s leading corporations and raises funds for vital NF support services in Australia.
ctf.org.au/
16 May NSW
The Swisse Colour Run NSW Help make a difference and run for CTF in the Happiest 5K on the Planet coming to Wollongong and Newcastle this year.
thecolorrun.com.au
24 May | 28 June NSW
Stadium Stomp QLD/NSW Be part of Australia’s only stadium stair climbing challenge and make every step count by raising funds for CTF.
stadiumstomp.com.au
14 June 2015 SA |21 June 2015 QLD 5 July 2015 VIC | 26 July 2015 NSW
The Age Run Melbourne Get fit and have fun while supporting CTF in the Age Run Melbourne that welcomes participants of all ages and abilities. Events include the 3km Kids run (to take place on Saturday 25 July), 5km walk/run, 10km run or half marathon.
runmelbourne.com.au
26 July VIC
The Sun Herald City2Surf Join Sydney’s favourite sporting event and the world’s largest run with participants from all over the world. Run or walk the 14km race for CTF from Hyde Park in Sydney’s CBD to the finish at spectacular Bondi Beach.
city2surf.com.au
9 Aug NSW
HBF Run for a Reason WA Walk, jog or run in one of Perth’s biggest events. HBF Run for a Reason is a fun and memorable way to improve your health while making a difference and raising funds and awareness for a good cause.
hbfrun.com.au
24 May WA
NF Walk Townsville Join the Townsville community for their third annual NF Walk at The Strand Park. Meet and greet from 9am, with the walk to start at 10am, followed by a sausage sizzle and raffle. To get involved contact [email protected] or visit their Facebook page – Neurofibromatosis NF Townsville QLD.
16 May QLD
The Sydney Morning Herald Half Marathon Run for a cause close to your heart and challenge yourself in Australia’s largest and most prestigious half marathon through some of Sydney’s harbourside icons including the Opera House, Harbour Bridge and Pyrmont Peninsula. Take on the 21.1km course or get a team together and enter the relay.
smhhalfmarathon.com.au
17 May NSW
City2Surf Fun Run Series NT Whether you are an experienced runner, recreational jogger or a social walker have some fun, get active, and be charitable in this community event.
ntcity2surf.com.au
7 June NT
NSW Reunion Morning Tea Meet members new and old to catch up and discuss your NF experiences then and now. The morning tea will be held at Pages Cafe in West Ryde from 10am. RSVP online or phone 02 9719 3356.
ctf.org.au/sydney
1 May NSW
CEO Lisa Cheng [email protected] 02 9719 3523
Support Sally Maspero [email protected] 02 9819 7349
FundraisingMolly Umble [email protected] 02 9719 3356
MarketingNoeleene [email protected] 9719 3356
Office Contacts
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