RUNNING FOR NFFROM DALLAS TO SYDNEY Marathons, enticer triathlons, cycling, fun runs – just looking at this list of activities is enough to tire some of us. For Julia Szulerowski these provided more than just an active lifestyle; they provided her with a way to cope with NF.

NF NEWSISSUE 124 SPRING 2014

Julia was diagnosed with NF at 20 years old. She first presented with symptoms at 6 after having a cyst removed, but the condition was unheard of at the time. At 20 Julia assumed NF wouldn’t be much more than a few lumps (neurofibromas) and coffee-coloured spots (café-au-laits); she didn’t know the condition was progressive and unpredictable, or that her child could have NF any worse than she did.

Julia became involved with the running community in 2000 when she ran her first marathon in the USA – the Dallas White Rock Marathon – a few months before her 40th birthday. She only needed to complete one to prove to herself that she had “the stuff” to run a full marathon, and realised running offered her more than just a way to stay fit.

“Running for me became a way to deal with NF. It helped me to stop crying over it, and helped me to do something.”

But NF wasn’t the only challenge Julia had to deal with. Shortly after her first marathon Julia underwent surgery to remove an unpronounceable tumour (pheochromocytoma) from her adrenal glands, and again in 2003 to remove a tumour from her spine. In the same year her daughter Jessica (then aged 16) was diagnosed with a brain stem tumour, and the following year Julia was diagnosed with pre-cancerous esophageal cancer.

Life has dealt Julia one challenge after another, but amid all the health scares and battles, none have stopped her from pursuing her main objective: to run for NF. As one souvenir from Julia’s marathon experience says, “Can’t run

from NF…can run for NF!” And run she has. In 2001 Julia participated in the San Diego

marathon and raised over $5,000 for the U.S. Children’s Tumour Foundation (CTF) where she met Steve Kendra and Bob Skold from the NF marathon racing team.

Together they ran NF marathons in: Chicago (2001); Alaska (2002, 2006); Vancouver (2003); Virginia Beach (2004); Nashville (2005); Las Vegas (2005), and Phoenix (2007). Julia’s efforts helped raise a total of $40,000 for CTF in the U.S. and also provided her with a strong network of support.

“Each event I ever attended gave me a feeling of hope. There is something about being in a room of many people all there to raise money and awareness for NF.”

Julia continued her running for NF efforts upon returning to Australia where she connected with CTF Australia. In 2011 Julia launched the Run Kiama Fun Run for NF and raised $2,800. Julia has been an active member of CTF Australia since, participating in various fundraising events in support of the Foundation, including Cupid’s Undie Run!

NF may be a lifelong condition, but it has also been Julia’s motivation for living her life.

In the classic film,Forrest Gump, Forrest says, “My momma always said you can tell a lot about a person by their shoes – where they’re going, where they’ve been…”

As a runner and as an adult with NF, it’s safe to say that Julia’s shoes have truly been everywhere. And they’re still going.

CONTACT US CHILDREN’S TUMOUR FOUNDATION OF AUSTRALIATEL: +61 2 9719 3356FAX: +61 2 9719 3575WEB: WWW.CTF.ORG.AUEMAIL: INFO@NFAA.ORG.AU LIKE US ON FACEBOOK WWW.FACEBOOK.COM/CTFAus

GET INVOLVED● Want to raise money for NF likeJulia, but not sure where to start? Visit our Step Up for NF website atwww.everydayhero.com.au/event/step-up-for-nf

LET US KNOW● Do you have an NF storyyou would like to share? Email your story to Noeleene at noeleene.yap@nfaa.org.au.

While 2014 saw seasoned Sydneysiders participate in the “brief” run for its second year, Brisbane and Melbourne were quick to get into the Cupid spirit as first-time participants immediately got behind their city’s inaugural Cupid’s event.

From tutus and feather boas, to angel wings and superhero costumes, runners took creativity to the next level with their undie-inspired outfits, and came prepared to make a spectacle of the event. For participants, daring to bare proved to be a small feat in comparison to the battles endured daily by our NF Heroes: Chantelle, Charlie, Emily, Ethan, Nate, Hannah, Harrison and Katie.

With fun race day festivities, including a raffle, photobooth, and aerobics sessions on the racecourse presented by Goodlife Health Clubs in Sydney, Fit n Fast in Melbourne, and Fernwood Fitness in Brisbane, the event received plenty of praise from runners in all cities. Participants expressed joy at their involvement in such a great event for a good cause and are already looking forward to next year!

After some incredible fundraising, Cupid’s Undie Run more than quadrupled last year’s fundraising efforts! Custom undie-shaped medals were awarded to top fundraisers in each city, with our top individual, Kylie Brennan from NSW, raising $9,050. Kylie, who has no connection to NF, also pulled out all the stops for her Valentine’s Day-themed undie outfit and did the entire run in her heels!

The highest fundraising team in each city also received a special trophy on the day, with Melbourne’s The Barney Army topping the national leaderboard after raising an impressive $35,998! The group of 47 ran for little Barney, who was recently diagnosed with NF, and arrived

complete in matching “The Barney Army” bandanas. Their amazing fundraising efforts also saw them rank 4th overall on the international leaderboard for Cupid’s Undie Run fundraising team. That’s across 3 Australian cities and 27 US cities – an amazing achievement!

Funds raised through Cupid’s Undie Run will help fund world-class research at Australia’s leading NF research centres. It is through critical research that we hope to assist in the development of medical treatments that may alleviate symptoms experienced by NF sufferers, and ultimately find a cure to end NF.

Cupid’s Undie Run is a good-spirited event offering a fun and light-hearted way to raise funds and awareness for NF. Of those who participated in Cupid’s Undie Run this year, 81% claimed to have no connection to NF, and yet participants raised an individual average of $236. With its widespread appeal, Cupid’s Undie Run is a great opportunity to reach the masses to raise awareness and support for NF and CTF, and we look forward to having more people both within and outside of our NF community join us for Cupid’s Undie Run 2015!

The success of Cupid’s Undie Run was only made possible by the time and generosity provided by an army of supporters.

Thank you to our Brisbane and Melbourne Race Directors from Radio Rentals who all kindly volunteered their time and efforts to help get Cupid’s up and running: Raymond Slater, Tamie Souter, and Kristie Gannon from Brisbane, and Alan McKinlay from Melbourne.

Thank you to our wonderful volunteers and our lovely intern Bonnie Ratcliff who orchestrated volunteer duties and ensured the day ran smoothly.

Thank you to our sponsors and partners: Bonds, Radio Rentals, NOVA FM, Bungalow 8, Barangaroo, Watermark Docklands, The Caxton Hotel, Bondi Vixen, Goodlife Health Clubs, Red Bull, The Party People, Yelp, Fit n Fast, Fernwood Fitness, and Student Edge. Cupid’s would not have been the event that it was without your involvement.

A HUGE thank you to everyone who participated and donated – your involvement has helped to make a difference in the lives of the thousands of Australian adults and children affected by NF. In addition to the funds raised, your support has helped to ensure more people know about NF today than they did yesterday.

CUPID’S UNDIE RUN RAISES $147,000!

News & Events

CTF would like to acknowledge the passing of one of our most valued supporters, Mrs Barbara Ruth Locke, who died on 14th March 2014. Mrs Locke left a lasting legacy to CTF in her will and was extraordinaly committed to

supporting our organisation and driving awareness, support and research for NF. It really is one of the kindest, most important things you could ever do – helping an organisation like ours now and in the years to come to provide critical

services to families and adults with NF and help fund research to develop the treatments that finally end the suffering and heartbreak of NF once and for all. Our deepest gratitude to Mrs Locke and our sincerest condolences to her family.

More than 500 Australians participated in Cupid’s Undie Run on Sunday 9 February. Members and non-members of CTF participated in the annual event, which garnered nationwide support and generosity that resulted in $147,000 being raised for NF research and support services.

● View photos from Cupid’s Undie Run

● on the Cupid’s Undie Run – Australia

● Facebook page: www.facebook.com/

● CupidsUndieRunOz

● Cupid’s Undie Run may be over for

● now, but you can register your interest

● for next year and be first to find out

● when registrations open for 2015. Pre-

● register for Cupid’s Undie Run 2015 on

● www.cupidsundierun.com.au

VALE BARBARA RUTH LOCKE

The Sydney Dining with Daisies Gala Dinner (formerly the Black & White Gala Dinner) was held during NF Awareness Month, on Wednesday 14th May 2014, at Doltone House Hyde Park.

The event was sponsored by Thorn Group, Westpac Institutional Banking, Morgans, Gresham, Acer and hosted a range of guests, including CEOs and executive managers, from some of Australia’s leading corporations.

Emcee, Dancing with The Star’s judge and entertainer, Todd McKenney did a stellar job hosting the event along with renowned Australian entertainer Tom Burlinson who entertained guests with a string of Frank Sinatra favourites.

More than 90 silent and 11 live auction items went under the hammer including dinner at Todd’s house, business class flights to New Zealand generously donated by Emirates contributing to close to $300,000 being raised at the event.

But the real focus on the night was in helping children and adults living with NF through the establishment of a national network of Support Officers starting with Sydney and Melbourne.

Alison and Brendon Aberley, whose son Will was diagnosed with NF last year, spoke candidly about the challenges of having a newly diagnosed child only to be complicated by her own diagnosis a few months later. Her story was heart wrenching; detailing how isolated they felt at the time and how difficult it was to get information about NF. Eventually, Brendon made contact with CTF and was able to get some guidance and support through CTF’s NSW-based Support Officer.

The focus for fundraising for the event was to help fund the establishment of Support Officers in each state across the country starting with Sydney and Melbourne. Brendon spoke about how much of a difference having someone to talk to was for them when they were diagnosed

as they struggled to find information to help them understand both the condition and what it would mean for their family.

This vision for a national support network was boosted by the outstanding result with almost $300,000 being raised on the night and the funds being matched with a generous gift by a guest attending the event.

We are so grateful to everyone who attended and supported the event and our wonderful sponsors. The evening was a watershed moment for CTF and will help us to extend programs like our national Support Officer network into other states.

We’re looking forward to the Melbourne Dining with Daisies Gala Dinner which will be held later this year on 31 October at the Myer Mural Hall in Bourke Street.

If you would like to purchase a table or are interested in sponsoring the event please contact Lisa Cheng on 02 9719 3356 or lisa.cheng@nfaa.org.au.

DINING WITH DAISIES

GALA DINNER

News & Events

The Dining with Daisies Gala Dinner is a Children’s Tumour Foundation major fundraising event raising critical funds to sustain research, awareness and support services for children and adults living with NF.

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VB880_DiningwDaisies_LecturnSign_81x47cm_PR.pdf 1 6/05/2014 8:43 am

Fundraising

STEP UP ANDSTEP OUT FOR NF NF Awareness month saw a number of successful community walks hosted for CTF across the nation including Townsville, Maryborough and Uralla. But if you missed your local walk or want to organise your own, it’s not too late to get together with your family, friends, and entire community for an NF Walk, pedometer challenge or some other fun community event.

By hosting your own walk or fundraising event, you will not only be having fun and bringing together your community to support CTF you will be raising awareness and funds to help establish much needed NF support services nationwide.

Why an NF Walk?

NF Walk is a community-driven national fundraising program that unites the NF community and provides support for individuals and families living with NF.

NF Walks are fun, friendly events that are open to the whole family and are a great opportunity to raise awareness, build community support, and meet other families and community members affected by NF and facing similar challenges.

NF Walks in 2013

The NF Walk Program for CTF Australia was launched in 2013, with the first two Walks hosted by Townsville QLD and Broken Hill NSW. Both received more community and fundraising support than anticipated, and together raised almost $10,000 for NF support services.

Walking in 2014

With more NF Walks hosted this year already, CTF hopes to dramatically raise NF awareness nationwide. The NF Walks during NF

Awareness Month alone raised over $30,000 in

2014! Awareness Month is over, but you can

continue to help raise NF awareness by hosting

your own NF Walk at any time of the year. If you’re unable to host your own NF Walk, there is also the opportunity to walk your own way with the pedometer challenge. Step Up and Step Out for NF by committing to walk a certain number of steps each day, or a total number of steps for a month, and raise funds and awareness while you’re doing it. We will even provide you with your very own custom CTF pedometer to help you keep track of your steps! Step Up and Step Out for NF – get your

community involved and help raise funds

and awareness for NF.

To register your interest in organising an NF Walk or walking your own way with the pedometer challenge contact CTF on 02 9719 3356 or emaillisa.cheng@nfaa.org.au.

DONATE● To make a donation, sponsor a friend,

or simply find out more information,

please visit the NF Walk website at

www.everydayhero.com.au/event/nfwalk.

Unable to organise or join an NF Walk but still want to get involved and support the NF community? Step Up for NF and do it your way by hosting your own fundraising activity.

There are many fun and different ways you can raise funds and awareness for NF – participate in a sporting challenge, host abake sale or workplace BBQ, organise a trivia night, quit something you love for a month…the possibilities are endless!

Fundraising is also more fun with company,

so invite your friends and family to join you as you Step Up for NF Awareness Month. Or get in touch with your friends and other local groups to see if there are any scheduled events you can join to help raise funds and awareness for NF.

To register your fundraiser, or for any assistance and questions about fundraising, contact CTF on 02 9719 3356 or email lisa.cheng@nfaa.org.au.

To make a donation, sponsor a friend, or

simply find out more information visit the Step Up website www.everydayhero.com.au/event/step-up-for-NF.

STEP UP… AND DO IT YOUR WAY!

Support

NEW NATIONAL SUPPORT OFFICERWe welcome new staff member, Sally Maspero, who has joined us in the role of National Support Officer. Sally is a registered nurse who has been working in an internationally recognised NF clinic in London for the last few years. She recently returned home to

Australia to be close to her first grandchild who arrived in late June.

Sally’s role is to develop and deliver a supportive care and information program for children, adults and families affected by NF. She will be working on many different

strategies to achieve this, some of which will include identification of existing support groups and liaison with clinicians who work with NF patients so you might be hearing from

her soon.

Sally is in the CTF National Office 4 days a week and can help with general NF related queries and provide information. To contact Sally phone 02 9819 7349 or email

sally.maspero@nfaa.org.au.

Research studies

Preliminary evidence that computer-based instruction can improve reading difficulties in children with NF1Learning disabilities are one of the most common and challenging complications of NF1 in childhood. Evidence from our own clinic indicates that 50-60% of school-aged children experience difficulty reading, with a specific weakness in their ability to sound out words when reading, known as phonological dyslexia. Due to the tremendous importance of reading for life achievement, weakness in this area is often a significant concern for parents, teachers and clinicians. Despite the impact of reading difficulties on educational success, self-esteem, and peer relations, no studies have reported on the effectiveness of reading interventions for children with NF1.

The NF1/Neurocognitive Research Team

at The Children’s Hospital at Westmead is currently examining whether a computer-based training program can improve reading and reading related skills of children with NF1 aged 7-12 years of age. The program specifically focuses on training phonics–that is, developing the child’s ability to hear, identify and manipulate the small subunits that form words. The aim of the program is to enable readers to be able to sound out words using spelling-to-sound rules; a weakness that appears to underlie the reading difficulties in NF1.

To date, 28 children have completed our trial, which required participants to complete five 20-30 minute sessions of the program per week over an eight week period. We

examined children’s reading ability before and after the training program. Initial analyses of the data indicate that training significantly improved children’s ability to read conventional words that follow spelling-to-sound rules as well as other reading related skills that are important for reading success. Critically, improvements observed directly after training were maintained eight weeks after treatment, suggesting that phonics-based intervention can improve short and possibly longer-term outcomes of children with NF1.

For further information about this study, or for information about other studies conducted by the NF1/Neurocognitive Research Team, please contact us on (02) 9845 3057.

The Institute for Neuroscience and Muscle Research at The Children’s Hospital at Westmead (CHW) is continuing the research study investigating whether a computer- based training program can improve the reading skills of children with NF1 who have reading difficulties.

The researchers are currently seeking children aged 7-12 years old with NF1 to participate in the study. Each child will undergo a screening assessment at CHW to determine their reading skills and eligibility for the computerised reading program.

The results of the study will improve knowledge about reading difficulties in NF1 and assist in identifying effective intervention strategies.

All participants will receive a summary of their results once they complete the study.

For further information or to volunteer your child for participation in the study please contact Shelley Arnold on 02 9845 3057 or email shelley.arnold@health.nsw.gov.au.

COMPUTERISED READING PROGRAM FOR CHILDREN WITH NF1 AND READING DIFFICULTIES

Efficacy of methylphenidate treatment in children with NF1: A randomised placebo-controlled cross over trialThis research study will investigate whether methylphenidate, a stimulant medication typically used to treat attention deficit hyperactivity disorder (ADHD), can improve cognition and learning in children with NF1.

The researchers are currently seeking children with NF1 aged between 7 and 17 years to participate in the study. Children do not have to have ADHD to take part in this study.

As part of the study a screening assessment will be performed to determine whether your child is a suitable candidate for the treatment. The results of this study will help to determine whether methylphenidate

can improve attention, working memory and behaviour in NF1, and improve knowledge of the underlying causes.

All participants will receive a summary of results once they complete the study.

The study will be conducted by the following investigators: Professor Kathryn North, Dr Jonathan Payne, Natalie Pride, Dr Belinda Barton, Dr Paul Hutchins and Dr Sarah Sandaradura from The Institute for Neuroscience and Muscle Research at The Children’s Hospital at Westmead (CHW).

For further information about this study please contact Natalie Pride on 02 9845 3714.

Get connected

LOCAL SUPPORT GROUPS AND CONTACTSGetting in touch with your local NF contacts and organising regular social events is a great way to form an NF support network within your community. Meet other adults, children and families affected by NF, share words of advice and support, and form new lifelong friendships, just as the Gippsland NF Support Group has done.

The Gippsland NF Support Group has been an ongoing source of support for surrounding NF community members. Led by Eddie Beulke, the Gippsland NF Support Group organises a number of social outings for its members throughout the year. Below is an update from Eddie on the Gippsland NF Support Group’s first community event for 2014.

The Gippsland NF Support Group recently held the first of its four yearly functions in Warragul (VIC). Attendees usually travel from Bairnsdale in the east and Melbourne in the west for a BBQ lunch, picnic, and catch-up.

Congratulations was in order for Blake

James and Jill Clarke who have both recently undertaken studies to further their educations. Blake obtained his Diploma in Multimedia and Jill obtained her Certificate in Disability, both very keen to obtain work in their fields.

Discussions were also held about promotion of the support group through community news on local television and FM radio, with Jill offering to travel to other locations in Victoria to meet with others who do not have access to support.

Eddie was also one of a number of CTF members who participated in Cupid’s Undie Run Melbourne.

ACT Ruth O’Brien Email ruth@rj-networking.com.au

NSW – Mid-North Coast Cheryl Maurer (NF Family Picnic Day enquiries)Phone 02 6585 8232 or 0437 858 232

NSW – NewcastleVicki BrazierEmail vickiandneil1@bigpond.com

NSW – Northern Gwen Butler Phone 02 6653 2403 Email butlersg@bigpond.com

QLD Alexandra &TienChucEmail alexchuc@westnet.com.au

QLD – Townsville Christine James Phone 0408 070 834Email christinewhelan30@yahoo.com.auFacebook: Neurofibromatosis NF Townsville QLD

TAS Stan Mead PO Box 234 Sorell TAS 7172

VIC – Gippsland Eddie Beulke (Gippsland Neurofibromatosis Support Group)Phone 03 5134 1070Email eddiebeulke@hotmail.com

SA Dianne Shipton (NF Association of South Australia)PO Box 867 Marleston SA 5033Phone 08 8293 2770Email nfsa19@bigpond.com

WA David Freedman (President NF Association of Western Australia)Email watso@cnswa.com

If you would like to make a donation or leave a bequest to The Children’s Tumour Foundation, please contact Lisa Cheng, CEO on 02 9719 3356 or email info@nfaa.org.au

● Get connected with your local NFcommunity. See below for details of some of our local NF contacts. Need to update your contact details? Want to volunteer yourself as the local NF contact for others seeking support in your community? Email your details to Noeleene at noeleene.yap@nfaa.org.au.

Factsheet

TALKING WITH CHILDREN ABOUT NEUROFIBROMATOSIS Talking with your children about Neurofibromatosis is a challenge for most parents. Many people feel ill equipped to tackle this task successfully. Knowing what to say and when to say it needs preparation and some thought. There is no single approach that is the “right” way or the “wrong” way.

However the benefits of starting this conversation are fundamental to your child’s sense of well-being. It is important to help children understand about NF and to enable them to talk openly about it: what a diagnosis of NF means for them and what it means for the rest of the family.

This factsheet points out some of the things you will need to think about.

A research project in 2011* found that when parents discussed a genetic diagnosis openly throughout childhood, those children had a better understanding and more insight compared to families who did not. Most children questioned in the research (including those with a diagnosis of NF) expressed the view that it was helpful to learn about their condition gradually, over an extended period of time. Children whose parents talked about NF with them when they were very young found disclosure less of a shock, enabling them to build up their understanding gradually at a pace that matched their ability to understand. As they matured so they could gradually absorb more complex information.

Who should tell my child about NF? Children usually prefer their own parent(s) to talk to them about something as important as a medical diagnosis. If this is not possible then that person should be someone your child is close to and trusts.

In the same research project there was clear evidence that children wanted their own parent(s) to be the main source of information, at least in the first instance. Research findings showed that children believe that their parent is the person who knows them best and understands them best.

As children grow older and their knowledge increases, the information offered by their parent can be supplemented by information

from health professionals. So for example, if a young person asks about genetic risk factors, this could be discussed at a clinic appointment where more specialist knowledge is on hand to support parental explanations. It can be helpful to encourage older children to think about their hospital appointments beforehand and even to prepare a list of questions for their doctor. This helps your child to use the clinic appointment constructively and to address the questions that are important to them. Their questions may be quite different to yours!

Where NF is a new diagnosis, parents can struggle to deal with the questions that their child may raise. Being honest and open, offering to find out information to tackle questions you can’t answer are helpful steps in developing your child’s understanding.

Why should we tell children about NF? Most parents find telling their children about a genetic diagnosis very difficult and upsetting. Where NF is a new diagnosis for a family this can be particularly challenging as there is no point of reference.

As parents we mostly want to shield our children from things that can make them unhappy or upset. For this reason some parents are reluctant to tell their child about a diagnosis of NF because they believe it will cause distress not just for their child, but the whole family. If those parents have struggled to accept the diagnosis themselves, then finding the words to talk about this becomes more and more difficult ...and so it gets put off. However not telling children makes them more vulnerable as they cannot ask questions or talk openly about their fears. It creates a barrier.

Some children have found it comforting to have an explanation as to why they find some things difficult; for example if they struggle at school, if their balance is poor or if they

cannot run as fast and easily as other children. Talking about NF in an open manner can help children to cope when life is not going well, so they can overcome setbacks and manage difficult situations such as health problems, uncomfortable tests, scans or surgery. Often children cope with difficult news better than parents might expect.

Who shall we tell? Your child(ren) in the first instance. Talking with your child(ren) will start their process of understanding NF, what it means...and what it doesn’t mean. Being open gives them permission to ask questions, to talk about their feelings and fears, their worries for their future and offers them some reassurance.

It is also important to think about who to tell within the family. Where there are a number of children, some with NF and some not, it is important that the unaffected children are also included in discussions at some point. If this does not take place there is a risk they can feel excluded, that there is a secret that they don’t know about, that something is going on that is their fault.

Some families like to keep the diagnosis a private matter limited to members of the immediate family. Others adopt a more open approach. Again it depends on personal preference and family relationships. Grandparents can be a great source of support for parents in this situation. Conversely, disclosing a diagnosis of NF1 can prompt unhelpful feelings of blame and recrimination within families. Some members of the extended family may deny there is any problem at all and suggest “there’s nothing wrong with him/her”. This can cause further difficulties within the family.

It may help to talk to your children, if they are old enough, about who they think needs to

Factsheet

know. Some children have strong views about this and don’t want to be seen as “different” to their peers. They may want to tell close friends or other adults they are close to and can confide in. It is usually helpful to talk to your child’s teachers (class teacher, head teacher or Special Education teacher) about the diagnosis. If there are any emerging problems evident within the school setting these should not be overlooked but supported constructively and resources made available as necessary.

When to talk about NF Choosing the right time can be tricky! You need to think about a time when your child feels comfortable and able to listen without distractions. If this is a new diagnosis you may find it difficult to talk because you feel upset yourself. It is important therefore to allow yourself some time to manage your own feelings about the diagnosis and to gain some sense of perspective before talking to your family.

If there is no pressing urgency then talking about NF can be delayed until you feel better able to manage the situation. Other reasons to postpone telling may be important exams or serious illness in the family. But it is important to do this at an early opportunity and not delay unnecessarily.

Sometimes the timing of a discussion about NF can be prompted by a forthcoming hospital appointment, a magazine item, an online search, television programme, or your child’s question. This gives you the opportunity to start the conversation. Some children find it easier to hold this conversation when they are with you doing a routine task such as shopping in the supermarket together or during a walk or a car journey.

If your child has problems with understanding or learning difficulties it is important to ensure your language is simple and clear, that your sentences are quite short and that you don’t offer too much information at once. Reassure them that they can always ask you questions, that if they forget or don’t understand you will talk with them again.

Is it not a better idea to wait until my

child is more grown up? Research into the experiences of children talking about their genetic diagnosis suggests

that this is not the case. Children learning about their diagnosis at a young age adjust and accept their status more readily than those where that is withheld.

Many adults with NF1 will be transferred to the care of their GP after discharge from the paediatric service. Patients with NF2 will have their health monitored by medical specialists when they leave the paediatric service.

It is important that young people leaving paediatric care understand their health needs and know when to seek medical advice.

The process of learning about NF is one that begins in childhood, continues into adolescence and, supported by health professionals, is consolidated in adulthood.

If parents delay this process until their child reaches adulthood, there is the risk of anger and recrimination that this, their personal health information has been withheld... even when the underlying motive has been to protect. There is also the real risk that children will make their own enquiries without your knowledge, online and through social media. They will then have no one to share their fears and worries with. Some parents find they have never been able to talk to their child about the diagnosis, and then face the very difficult situation all over again when grandchildren are born to their affected son or daughter who is unaware of the risk that their child may inherit NF.

What to say... Once you think the time is right, when you are comfortable and calm, you can start the conversation. You know the words your child will understand. The first conversation is just a starting point, a bit like the first step on a ladder. Don’t plan too much as your child may ask questions that take you by surprise and so throw you off track.

Allow your child to ask questions...these may be immediate or come some days later. Let your child take the lead in where the conversation goes. Don’t try to cram too much into the first session or overload your child with too much information. Keep language simple with short sentences.

Some examples of what you could say to start the conversation about NF:

“We are going to see the doctor at the hospital tomorrow. She will be checking you over to make sure you are keeping well....”

“This doctor sees lots of children with brown patches on their skin. Doctors call these a special name: cafe au lait patches...”

“Next week you will be having your hearing test at the hospital. This is to check to see if your hearing nerve is working properly...”

Encourage your child to ask questions. Keep your comments open so that you can encourage your child to express what they are thinking to help you share their feelings. It helps if you ask open questions that don’t just lead to a yes or no reply. For example you might say: ...”tell me about”...” or “what do you think about....”

If your child does ask you a question make sure you answer the question they ask and don’t go off at a tangent. If you don’t know the answer then say so but offer to try to find out.

Finally it is important to reassure your child that there will always be people who love them and will care for them. Having NF does not change the person that they are; NF is just one part of who they are.

* “Parents’ and children’s communication about genetic risk: a qualitative study, learning from families’ experiences” Metcalfe A, Plumridge G, Coad J, Shanks A, Gill P. European Journal Human Genetics 2011 (6):640-6.

Factsheet reproduced with kind permission of the UK Neurofoundation.

Author: Rosemary Ashton, UK Neurofibromatosis Specialist Advisor, January 2013

Adapted by Hilda Crawford, family support worker, The Children’s Tumour Foundation of Australia, February 2014

Disclaimer: The Children’s Tumour Foundation of Australia has taken reasonable care to ensure that the information contained in its publications is accurate. The Children’s Tumour Foundation of Australia cannot accept liability for any errors or omissions or for information becoming out of date. This information is not a substitute for getting medical advice from your own GP or health care professional.