THE PLEDGE

Quarterly Newsletter for the EHE Group

(Edition 10 : July - September 2017)

THE EHE FOUNDATIONTHE EHE RARE CANCER CHARITY (UK)*THE EHE RARE CANCER FOUNDATION (AUSTRALIA)** Currently awaiting registration

The EHE FoundationThe EHE Rare Cancer Charity (UK)The EHE Rare Cancer Foundation (Australia)

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We warmly welcome all our readers to this tenth edition of “The Pledge”, the quarterly

newsletter of the EHE Group. We hope you enjoy this newsletter, covering the third quarter of

2017. And to all our supporters, whatever the form of support that you provide, and regardless

of magnitude, we want to express our sincere thanks for your contributions. They are all critical

to our success and ability to ultimately defeat EHE. Every dollar donated, every patient

supported, every promotion of EHE is critical, every message or act of support priceless. Thank

you to all of you.

Clinical trial of Mekinist (Trametinib) is now up and running

The Phase II clinical trial of Mekinist (SARC033), based on the research undertaken by Dr

Rubin, is continuing in the USA for EHE patients with unresectable or metastatic EHE.

EHE Facebook membership exceeds 1,250

The EHE Facebook page, which had around 500 members in 2015, now has over 1,250

members across the globe, and continues to provide unprecedented support and information

for EHE patients everywhere.

Exciting discussions progress with regard to EHE research

Jane Gutkovich has continued to lead the research charge through the 3rd Quarter, progressing

important discussions regarding immunology, and biomarkers, including circulating tumour

DNA in the blood.

Fundraising events continue to raise critical funding

Our members have continued to raise exceptional funds for EHE research from multiple events

across the globe. Fundraising support is exceptional, but there is so much more to do.

Additional EHE group fundraising events on programme

The 3rd quarter has seen a number of group fundraising events begin to come together. These

include Australia’s 10,000 Step Challenge that will be running in October, the London

Landmarks Half Marathon in 2018, a possible 2018 cycle event, and a tough-mudder assault

course challenge.

Highlights

Welcome

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The EHE Group has a core objective to support those diagnosed with EHE, wherever they live,

while at the same time increasing awareness amongst the general public, government and in

some cases the medical and research community, of EHE and the impact of living with a rare

and frightening cancer. We thank all our supporters who have contributed to this critical part

of our activity, examples of which are provided in this section.

GB medal winner at World Transplant Games

We always love inspiring stories of EHE patients who

have faced some tough decisions and treatment options

after being diagnosed with EHE, yet have gone on to

live life to the full. In July, Elaine Barnes shared news

of her daughter Emma, who had represented Great

Britain at the 2017 World Transplant Games in Malaga

in Spain, four years after having a liver transplant due

to her EHE diagnosis.

Competing for your country in any world sporting

event is both a massive achievement and a huge

honour. But the dream of taking part and winning a

medal only comes true for a tiny handful of people. But

that is exactly what Emma achieved, winning silver in the badminton event. Amazingly Emma

took part and won her medal despite being told less than one year ago that she had a recurrence

of her EHE.

Elaine Barnes said “Her recurrence did not stop her competing and I couldn’t be prouder of

her”. We are also hugely proud of Emma’s achievement and want to congratulate her on

winning her silver medal, an awesome performance.

Membership grows

The 3rd Quarter saw the membership of our

Facebook group grow to over 1,250. We

welcome everybody who has joined us in the

3rd Quarter and hope that we can provide any

support and information that you may want or need.

Patient Support and Advocacy

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The EHE tattoo gallery expands

The 3rd quarter saw more examples of our members presenting their new EHE tattoos in support

of their loved ones, the wider EHE community, and our battle against this disease. These simple

tattoos carry great significance for EHE patients everywhere, as explained by Nicola

Henderson when she found her friend Jimmy Deane had added the EHE logo to his tattoos.

“Jimmy had more of his leg sleeve tattoo completed today and look at his new addition, his

London Marathon race number and our charity logo! I am overwhelmed and emotional! This

means so much I just had to share! This just shows we are not fighting our battle alone, so

many people are right beside us”. We agree with Nicola and want to add our thanks to

everybody who supports us with their own tattoo additions.

Elizabeth Downie: “One in a million” Jimmy Deane shared his tattoo of his London

Marathon race number which he ran in support

of EHE.

Lindsey Williams shared her

Just Live tattoo, and was

thrilled that her father

joined her.

Julie Lurie and her friend also shared

their Just Live tattoos.

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EHE Facebook continues to support worldwide EHE community

The EHE Facebook group provides a wonderful worldwide forum for members to reach out

and seek contact from the whole community, or from individuals, who may be facing similar

challenges, concerns and questions relating to EHE. The contacts made, and the support and

information that that can bring, can be hugely important to an individual.

In July we had yet another simple example when Diane Manley, a new member to the group,

reached out to a fellow EHE sufferer with a similar story.

Diane Manley posted :“Is there a Bev Williams on this page, I can't find her, I've just

read her story about her journey since being diagnosed with EHE in 2014”

Almost immediately the response came: “That's me!”

Diane and Beverley have since been in communication, and we hope that the interaction has

provided both with positive support and a feeling of shared challenge.

During the 3rd quarter we also received news from Ashley Simpson Hutchins that her sister-in-

law had just had a successful liver transplant. Ashley finished her post by noting: “She

continues to fight with a strength and faith that amazes us all. We are grateful for all of you in

this family, who have led us to this point. Without your guidance, especially that of Jane

Gutkovich and Lisa Hartle De Young, we would never have known where to begin to fight!

Just Live!”

We also received a heartfelt message of support and encouragement on the Facebook page from

Karen Scott Edwards who posted: “My husband was diagnosed with stage 4 EHE in Sept. 2005,

and passed away on Nov 20,2005. He was 40 years old. There is so much more information

and treatment options on this horrible rare cancer today than there was 12 years ago. Be

thankful that you have this page and the knowledge of each person and doctor involved. Keep

fighting for answers!!!”

We want to thank everybody, EHE patients, their loved ones, and other members, all of whom

make the EHE Facebook page such a positive forum with their daily contributions of love,

support, and information. There is a worldwide community of EHE patients who we know

value this forum very highly. So this is a HUGE THANK YOU to all involved. And we can

assure Karen Scott Edwards that we will most definitely be keeping up the fight for answers!

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EHERCC releases 2016 annual Report

Part of the regulatory obligations when running a foundation

is the requirement to submit an annual report for the

organisation, including the annual financial report. In the UK,

the EHERCC trustees felt that this report should be drafted,

not only to fulfil regulatory requirements, but also to provide

a promotional document that would help in marketing the

charity and its activities. In August the EHERCC issued its

new annual report format, which it has been sending to its

members and supporters, as well as medical and research

personnel.

Jeff Collins, EHERCC trustee, said “we undertook a review

of many of the different reports provided by different

charities in the UK, and ultimately tried to use the best ideas

from these documents. We were also delighted that Dr Rubin agreed to provide the Foreword

for the report, which provided a clear link between our charity and his research team in the

United States.”

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Message from Chile

Kathia Sonoda wanted to send the Facebook group a message from Chile that she was not

going to let EHE rule her life! There were fun things to be done. We love this attitude Kathia.

#Justlive

Getting together!

Jane Biddlecombe posted this picture of her unplanned

and impromptu meeting with the lovely Cecily Rose

Carter and Laurie on their epic tour of Northern Australia.

They met at Jane’s “bush block” on the day of the post,

but had also made plans for a meet up in Darwin in the

near future. Jane said “I'm so looking forward to showing

off my hometown and of course, eating a Singapore

Laksa together!”

Increasing awareness of EHE

Kari Kewish posted a photo of a “little guy” she had found

and decided to rescue. Then when she got home she decided

to give him a make-over to represent her fight against EHE.

Kari posted “I just thought I'd share my new little friend. I

need to get more people to see our awareness ribbon and he

might just help ”. Well done Kari, and huge thanks for

helping spread awareness of EHE.

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Transplant news

JoAnna Jones posted a simple message in August to thank everybody

for their continued support on the first anniversary of her liver

transplant. We are delighted that JoAnna continues to do so well, and

thank her in return for her support and encouragement offered on the EHE

Facebook page. Here is the heart that JoAnna included in her post.

While JoAnna was celebrating her first anniversary, we were delighted to hear that another of

our members, Akhtar Khan, who lives in California, received his donor liver in late August.

He asked that Lisa Hartle de Young share this joyous news with the group. Akhtar underwent

his transplant at Stanford under Dr Waldo Concepcion. Akhtar is staying close by Stanford as

they continue post-transplant care. We send our very best wishes Akhtar as he continues to heal

and recover!

Creature comforts

On the 7th August, Nancy Castle posted a

picture of her pet dogs, “the best

medicine she has”. Many agreed and

soon we had a gallery of pets to

look at! All agreed that their pets

provide wonderful support and

comfort at difficult times.

Kimberley is rocking!

Kimberley Ellmer posted a photo of herself in August “Rocking my Just Live

tank... Supporting EHE research...for my son and everyone else that's

fighting... just keep living ❤️”. Thank you Kimberley for your thoughts. We

wholeheartedly agree with the sentiment!

💜

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Kari Kewish spreads awareness

Kari posted a simple message. “I wanted to share with the group

this beautiful wreath that someone made for me to represent my

EHE and hopefully get people to ask about it. If nothing else I

made two connections with people who never heard of it, but

because of this project they are now more aware of it. We will

probably work together again in the future so I will continue to

be able to talk with them about it.”

We want to congratulate Kari for spreading awareness of EHE,

and at the same time promoting awareness of the work our

foundations are doing.

Seeking help

Running a foundation with volunteers only can be a

demanding process. It seems that there is always more to

do than people to do it. In late July, LeeAnn Deacon

Conner posted a picture encouraging people to offer their

help to the EHE Foundation if they have time. But that

call for help could equally apply to the EHE Rare Cancer

Charity (UK) or the EHE Rare Cancer Foundation

(Australia). So if anybody reading this newsletter feels

that they may be able to help, please make contact and the

relevant foundation will be happy to discuss the options.

Jane Gutkovich active through the 3rd quarter.

Jane Gutkovich, Director of Research at the EHE Foundation, continues to meet and discuss

different aspects of EHE, and associated research, with the medical and research communities.

Many of these meetings are preliminary in nature and are not reported within ‘The Pledge’.

However, two important meetings took place in the 3rd Quarter which we felt our readers would

like to hear about.

Research

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In July, Jane met with Dr Okuno at the Mayo Clinic to discuss a number of important matters:

1. Jane updated Dr Okuno regarding the EHE Immunology project being discussed with

Dr Schreiber, and is delighted that Dr Okuno has agreed to act as Leading Oncologist

on the project.

2. Dr Okuno has also agreed to add EHE to an ongoing project at the Mayo Clinic that is

looking to identify circulating DNA in blood for different sarcomas. Jane will be

reverting to Dr Okuno on this project in October.

3. Finally, Dr Okuno has asked Jane to compile and share with him good studies and

articles on different aspects of EHE. Jane had previously sent him a paper on transplants

involving EHE which he found extremely interesting. Jane’s next set of papers to be

sent out will be on pathological prognostic biomarkers for EHE

In August Jane also met with Dr Michael Wagner who recently finished his fellowship at MD

Anderson under Dr Ravi. While completing his fellowship, Dr Wagner developed an interest

in vascular tumors. He is now working at the Fred Hutchinson Cancer Research Center under

Dr Seth Pollack, who had provided the introduction for Jane. The conversation with Dr Wagner

was extremely interesting, with agreement to explore the development of studies on the role of

VEGF in EHE and also blood biomarkers. There is a possibility that this work may be

conducted as a collaboration with foundations focused on angiosarcoma.

Jane, and the EHE foundations, would like to express their sincere thanks to the doctors and

research scientists who continue to engage and discuss EHE, and different projects that may

help us as we strive to find answers to this destructive sarcoma. We also want to thank Jane for

her ongoing dedication and commitment to helping promote EHE research.

Dr Rubin’s mid-year report

In 2016 we were able to fund a new post-doc researcher in Dr Rubin's EHE Research Team

based at the Cleveland Clinic. As part of the funding Dr Rubin provides us with a six-monthly

update about their work. The 2017 mid-year report was published in August and shared with

our members. The report provides a useful overview of the work Dr Rubin's team are doing,

and which continues to make progress. For those who wish to see a copy of the report, please

contact your local EHE foundation who will be happy to provide a copy.

EHE Tissue Availability – ITS CRITICAL

Jane Gutkovich reminded the EHE community that one of the key challenges we face is the

availability if EHE tissue samples for ongoing research. EHE is so rare that the actual number

of opportunities to secure EHE tumour tissue, surgically removed from patients, is very small.

It is therefore critical that wherever such an operation is taking place, and assuming that the

patient is happy for their tissue to be used, that the appropriate arrangements are made. This is

particularly important as researchers strive to develop cell lines where EHE cells are grown

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and multiplied in a controlled laboratory environment to provide EHE cells for use in several

critical areas of EHE research.

However, while capturing a tissue samples may sound simple, there are complex approvals and

procedures that must be complied with. These approvals can take time to organise. And if such

approvals are secured, the appropriate tissue handling and storage procedures must also be

followed to ensure that the sample is suitably captured and stored for use in future research.

The EHE foundations are all ready to assist patients in capturing such samples. We would ask

all EHE patients who are facing surgery, and who want to assist research by making their tissue

available, to contact the appropriate EHE foundation (USA, UK or Australia) so that we can

help in making all preparations.

We cannot overstate the importance of capturing samples as we move forward, and would

encourage all our EHE patient members to contact us should they have any questions, or require

any help. We thank you in advance for any support and assistance you may be able to provide

to help deliver these important tissue samples.

Phase II clinical trial of Trametinib for EHE continues

Jane Gutkovich reminded the EHE community that the phase II clinical trial of Trametinib is

under way in the USA, and is based on Dr Rubin’s ongoing EHE research. The trial is open to

EHE patients with unresectable or metastatic EHE. Jane shared a short Q&A document

provided by Dr Rubin to assist patients understanding of the trial. Dr Rubin is also happy to

answer any questions for those who may be considering the trial. He can be contacted by email

at rubinb2@ccf.org. If you want to receive a copy of the Q&A document, this can also be

obtained from the EHE Foundation.

Promoting IRE for possible EHE tumour treatment

Dr Raj Narayanan is a good friend of our EHE community! While many radiologists remain

reluctant to use IRE ablation to treat EHE liver tumours, Dr Narayanan has been treating

patients with EHE using IRE for some time, with excellent results. We now need to spread

information and awareness of Dr Narayanan’s work to other areas, and other countries.

A key step in achieving this will be a paper that we are encouraging Dr Narayanan to produce

on the treatment of hepatic EHE with IRE, as this could have a profound effect on prognosis

and quality of life for EHE patients across the globe.

We are aware that IRE is not, and cannot be, a panacea for all EHE cases involving the liver.

However, in many cases it may keep EHE at bay and prevent it's progression. Taking into

account the specific biology of EHE, presentation of multiple lesions , and that we have seen

the successful ablation of tumours over 3cms in size with IRE, together with the preservation

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of normal tissue, we feel it is important to promote the use of IRE for the treatment of slowly-

growing EHE presenting in the appropriate locations.

We continue to encourage Dr Narayanan to provide his paper, for which we will provide all

assistance possible. We will also continue to seek to engage radiologists in discussion about

the use of IRE ablation to treat hepatic EHE.

Immunotherapy Patient Summits

Jane Gutkovich brought the EHE membership’s attention to the Cancer Research Institute

programme of Immunotherapy Patient Summits that are held each year in the USA. The

summits have been extended to five major cities in 2017.

Jane noted “If you happen to be

around, make sure to take part in

this wonderful event. You will

learn a lot about what might

become a decisive battle to beat

EHE”. We hope that some of our

members visited the summit

events and were encouraged by

this exciting and fast-moving area

of cancer research.

EHE rare cancer will be managed and ultimately beaten through a dedicated and focused

research effort to deliver answers to the many EHE questions that cannot be answered today.

The EHE Group is therefore focused on raising the funds needed to finance, drive and

accelerate an expanding EHE research programme. We thank all our members, their supporters

and members of the public for their fundraising efforts, some of which are described below.

Fundraising

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Claire rides for EHE research

On the 31st July Ingrid Coddington’s daughter, Claire,

completed the RideLondon 100 in 6Hrs 22min and raised

£2,770 for the EHE Rare Cancer Charity UK. This is an

annual event where riders complete a 100km cycle ride

around London.

Ingrid was rightfully proud of Claire and her wonderful effort.

She also provided a wonderful surprise by arriving from the

USA to meet her daughter at the finish. “I surprised her at the

end of her event; she had no idea I was flying over to see her;

so happy I could make it !!!”

We are also proud of what Claire achieved on that day, and want to again express our thanks

to her for the amazing sum raised for EHE research. We hope that Claire and Ingrid may return

next year where we hope to have other riders also taking part.

Brain Frank remembered

In late August Angela Osborn posted some pictures

from their annual event that is held in memory of her

brother Brian Frank. This year they raised a

staggering $7,000 for EHE research. We cannot

thank Angela and all those involved for this

magnificent effort. We know that Brian would be so

proud of what you have and keep achieving to help

with the war against this horrible cancer.

Sarah Medwin takes the plunge

At the end of July, Sarah Medwin posted that she had

raised £100 by jumping into the River Dart. Sarah is

also raising funds through a book swop at work. We

send Sarah a huge thank you for her support, and for

taking the plunge in support of EHE.

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Team Henderson ‘waxing financial’

Nicola Henderson ran her charity day at work for EHE in the 3rd Quarter. This included a casual

clothes day, sweet and cake stall, a raffle and even a sponsored leg wax!! Nicola said it was a

great day, and when she counted the funds raised was amazed to find the total was a whopping

and fantastic £850!!! Nicola was so pleased with this, as she should be. It was a really great

result, for which we send her huge thanks. We also want to thank all those who braved the

sponsored leg waxing, enduring pain to help us in our fight against EHE. That’s what we call

support!!

Jessie Jars 2017 launched

In early September, Kerry Hayman posted on Facebook that her daughter Jessie was launching

her Jessie Jars campaign for 2017. For those new to our group, Jessie, who was 12 last year,

wanted to do something to help raise funds to support EHE research after her mother, Kerry,

had been diagnosed with EHE. Jessie came up with the simple idea of asking people to collect

their spare small change in jars up until the end of the year, and then donate it to the EHE Rare

Cancer Charity. And so Jessie Jars were born.

We hope that many of our supporters will follow suit and start their own Jessie Jars. Why not

ask your family and friends to do the same. If we all join in, the campaign will grow and so

will the funds raised. Watch out for the Jessie Jars posts on the EHE Facebook page and get

ready to like and share when you see it. As Kerry said in her post, “Jessie’s behind us all 100%.

Let’s do the same for her! So please LOOK, LIKE, SHARE and take part in her campaign.”

And of course we want to thank

Jessie for her support and for

running this fantastic campaign

again this year.

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Queen of Hearts supports EHERCC

Diane Manley joined our Facebook group earlier this year. She

is a single Mum, but is being brilliantly supported by her brave

8 year old son. In early September Diane’s work organised a fun

fancy dress party which had a prize raffle. Unbelievably Diane

also ‘braved the shave’ to raise additional funds. “We had many

donations and raised £275 for EHE research.” We want to say a

huge thankyou to Diane, her son, and all those involved on the

day for a great event and for such wonderful support.

The Ladies from Knowle

Helen Pollard and her friends in Knowle are great supporters of

the EHERCC. Always looking for new ways to raise funds for

EHE research, this lovely group came up with the idea of

meeting at their houses for coffee, rather than going out, and

putting the coffee money they save each time in an EHERCC

mug. Helen says the funds are mounting up and she will donate

the proceeds to EHERCC towards the end of the year. We love

this idea, and thank ‘The Ladies from Knowle’ for their

wonderful and ongoing support.

A fantastic surprise

Jane Biddlecombe woke on 4 August to find a wonderful surprise waiting for her. Her great

friend Jo Pattinson, who is currently living in the UK, had enrolled to take part in one of the

Charity Challenge organisation’s climbs of Kilimanjaro in Tanzania in 2018, and has decided

to use the event to raise funds for EHE by supporting the EHE Rare Cancer Charity UK. Jane

was “so touched that Jo would think of EHE, considering she is already doing the Half-London

Marathon for the EHE Rare Cancer Charity in March next year...GO TEAM UK”.

We want to thank Jo for helping our fight

against EHE by taking part in this gruelling

climb, and wish her every success on her

journey.

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A wonderful gesture of love and support

In August, Nicola Henderson notified us that her little sister, Lindsey Smith, would be getting

married to George Thyer. Lindsey and George are huge music lovers so the invites to their

wedding are designed in the style of music tickets, which we agree are very cool! But what

surprised Nicola, and left her overwhelmed and

emotional, was to read on the invite that the

couple are asking their guests not to provide

wedding gifts, but instead to make donations to

the EHE Rare Cancer Charity (UK). Nicola

rightfully wanted to share this lovely and

extraordinarily generous gesture with the whole

EHE community. What was also lovely was that

Nicola received the news just before her next scan

results which helped put a smile on her face

during an anxious time. Nicola finished her post

with the hashtag #Justlive.

We also think that Lindsey and George have done a wonderful thing and want to thank them

for their wonderful support. We of course also want to wish them every happiness for their

special day, and their lives together. #Justlive indeed

Fantastic progress, but so much more to do

In August Jane Gutkovich posted a link to an article where a researcher had discovered a virus

that had unexpectedly killed cancer cells of several different tumour types. The discovery had

been made while working on cell lines in test tubes. Cell lines are tumour cells grown from an

initial human tissue sample under laboratory conditions, providing a source of cells for research

into that form of cancer.

Jane noted “having a cell line established for any form of cancer is a critical pre-requisite for

meaningful research into that cancer. Dr Rubin is trying to establish such a cell line for EHE,

but it is proving difficult, partly due to the rarity of tissue samples with which to start the

process, and partly because EHE may just be difficult to grow like this. But it is critical that

we develop a cell line. To do that, we need funds that will enable us to launch more than a

single attempt. The more times we try, the more likely we are to succeed”.

So the critical thing for our EHE community is to keep focused on raising funds so that we can

progress all the different research streams we want to. We have made a great start, and we are

so grateful to all those who have raised so much funding already. But now we need to do it all

again, and keep doing it, so that our EHE research can progress without delay. Please contact

your local EHE foundation if you want ideas or assistance in running a fund-raising event.

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‘EHE21’ named for half marathon

Mid-September saw the

runners named that would be

running the London

Landmarks Half Marathon for

EHE next March. The

EHERCC had secured 20

places, but this increased to 21

when an individual who is a

friend of Nicola Henderson

also secured a place and asked

to run for EHE too. We are

delighted to welcome Ellie

Morris to the team, the

EHE21.

In addition to Ellie, we are also delighted to have both the USA and Australia represented.

Devin O’Connor from York, Pennsylvania, will be flying to London to take part. Australia will

be represented by Jo Pattinson, a friend of Jane Biddlecombe.

But it is not just the runners that will be taking part. The EHERCC also needs to man a cheer

station on the route. We want the EHE cheer station to be bright and noisy, and are hoping that

many of our UK members will come along for the day and add their voices to the cheering

masses.

And finally, here are the current ‘EHE21’. We wish these brave warriors every success with

their training programmes and the run itself of course. Fly like the wind you guys. You are all

stars

Jo Pattison; Colette Eagles; Elaine Barnes; Emma Barnes; Stephen

Clare; Lorraine Hall; Jady Jones; Aza Carter; Erik Milke; Piers Webb;

Devin O’Connor; Penny Foster; Lucy Pollard; Mark Henderson;

Darren Marks; Neil Bennett; Adam Hutchins; Robert Smith; Jimmy

Deane; Amy Gwilliam; Ellie Morris

Upcoming events

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The Simmies set new challenges for 2018 and beyond

It was during the 3rd Quarter that Milly

Simmie emailed us with news of two new

challenges that she, and her husband Alastair,

had set for 2018. For new members, Milly

was diagnosed with EHE the day before her

wedding in 2015. But she and Alastair went

ahead with the wedding, and then

immediately threw themselves into

fundraising. In the 2nd Quarter of 2016

Alastair and his group of friends road from Lands End to John O’Groats for EHE research.

They celebrated the end of the ride with a charity ball held at the Hurlingham Club in West

London. These two events alone raised close to £150,000.

Following their 2016 ride, Alastair and his mates are now planning their next trip in the saddle,

cycling 'The Raid' - 760km from Biarritz to Barcelona! This is one of the toughest cycle rides

in Europe, with 18 Cols and a climb of over 12,000 meters! Crikey, now that is worth

supporting.

Not to be outdone, Milly wanted her own challenge. Since her

diagnosis as well as raising money for EHE Milly has been living

life to the full. A huge part of this has been getting back in the saddle

(four hooves not two wheels). Now Milly is setting herself the

challenge to ride at 1*. This is an international level of competition

and has always been her dream. Her aim is to ride at Brightling

CIC1* 2019. Brightling is her local event and is where Alastair

proposed to her, so it's always held a special place in her heart.

Milly will be using the event not only to challenge herself, but to

also raise funds for EHE. We cannot thank her and Alastair enough

for their continued support and dedication to raising such enormous funds for EHE research.

Watch this space in future newsletters for updates on how Milly and Alastair’s plans are

progressing.

Australia’s 10K challenge

Jane Biddlecombe, Director of the EHE Rare Cancer

Foundation Australian, has been working tirelessly to

set up an Australian-wide fundraising challenge. In

early July Jane notified us that she had received a

$5,600 grant from the Darwin City Council to help set up the challenge, and so the Australian

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10,000 Steps Challenge for EHE was launched. As Jane noted “This is an important grant,

which allows us to purchase items for the event and keep to our mission statement that "All

money raised by donations goes directly to EHE research"”!

The actual event is simple. For a $50 donation to the EHE Australian

foundation, each participant receives a wrist pedometer. And the

challenge? To simply walk 10,000 steps every day of October. Jane

was emailing many of her friends and colleagues to join the

challenge.

Early take up of the challenge was very positive. “EHE supporter Stevo, couldn't wait until

October; he signed up last week and began using the pedometer straight away! Sent in this

photo at 8.45am with 1,862 done and dusted. Thanks mate for taking the challenge to

improve your own health whilst supporting frontline research.”

Stevo on the forklift with

pedometer on his writs!

30 members of the Northern Land Council

crew signed up to support EHE research.

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A special young man

Carl Dickson shared a special moment with the EHE family when his son, Beckett, announced

that he wanted to sleep outdoors for one month “to raise $1,000 for soldiers that need it”.

Beckett knows that Carl has previously supported important causes, but recently has struggled

to participate because of surgery associated with his EHE. Beckett asked Carl to help put up a

tent, gathered all the possessions he needed, and started his one-month, one-man fundraising

campaign. Carl was rightfully very proud and deeply touched by his son’s ambition and desire

to support the causes that are so important to his father. We join Carl in saluting Beckett’s

wonderful attitude and wish him a very successful month under canvas.

Message of Hope

Every quarter Robinson Ortiz Jr, a member of our EHE family, shares some wonderful

photographs with a simple message of support. Here are the 3rd quarter photos and another

message of encouragement and support for all those fighting EHE.

And in other news….

“Sending peace, love and strength to

all those affected by EHE.”

21

The McCartneys are having a ….?

On 29th July Shawna and Sean McCartney posted a short video clip of their wonderful ‘reveal

party’ at which they would find out if their forthcoming new family member was to be a boy

or a girl. The excitement and tension as they cut the cake was palpable, and the joy of finding

blue sprinkles in the cake telling them that they would soon have a little boy in their family

was evident for all to see. This type of event was new to many outside the USA. We want to

thank Shawna and Sean for sharing the video with us, and of course congratulate them on the

wonderful news.

“Diagnosed 2 years ago in August. I'm 19 weeks pregnant, feeling great and

just found out we're having a......boy!”

A special birthday

Bridgett Koval and family shared news of the arrival of their daughter, Lili Louise, in August

2016. It only seems like yesterday, yet in August Bridgett posted update photos of Lili Louise

as she celebrates her first birthday. We want to wish Lili Louise a belated happy birthday from

everybody in our EHE family

22

Bees and Bears

Mike Robertson shared a post in which

he included photos of his favourite

hobby, bees. Mike confirmed he gets

regularly stung, and asked if anybody

had heard of bee stings being

therapeutic? There was not much

confirmation of the idea, but quite a lot

of people suggesting that this was one

therapy they might avoid!

Carl Dickson is a regular contributor to the EHE Facebook page. Struggling with pain

associated with his EHE, Carl had gone for an early walk one morning where he encountered

“this little fellow”! We think he looks cute from a distance.

“It’s a sign”!!!

Karen Stern gave our membership a smile when she posted

this picture taken in her home town outside a bar. She posted

“Out being a tourist in my home town and I think it's a sign!

What do you think??”. We hope that it is indeed a sign.

23

You’ve been framed

Julie Rivers Wahl decided that it would be great to enable our

members to promote EHE by using their Facebook profile

pictures. She shared her first example with our EHE Facebook

family and got a lot of positive feedback. Julie said “Obviously,

we haven't perfected it yet, but we are working on it. We look

forward to seeing the next version when ready.

Sending a message with cake!

Angie Prindle posted a photo of a cake that had been prepared for her

husband after his surgery to remove the upper lobe and the pleura. We

totally understand the sentiment expressed and wish him a speedy

recovery.