THE PLEDGE Pledge...2 We warmly welcome all our readers to this tenth edition of “The Pledge”,...
Transcript of THE PLEDGE Pledge...2 We warmly welcome all our readers to this tenth edition of “The Pledge”,...
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 [email protected]. 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.