Unfold the Story Untold

In our blog posts we always tell the story.
Since this is about GIST which is a rare cancer, I felt
the blog has to be “rare” too J
I am not going to write the story – you have to flesh it
out from the body of the emails below!

Here goes ……………………….
8th June 2015
Piga Fernandez (Life
Raft Group – LRG) to Dr. Nikhil (FOM – City chapter leader)
It was really nice to meet you personally in
Miami at the New Horizons conference. I personally am excited about the new
work that we can do globally to tackle important issues that impact our fellow
GIST patients.
I wanted to follow up with you about GIST Awareness
Day that is closely approaching on July 13th.
The Life Raft Group has launched a campaign called
#ShowUsYourRare leading up to GIST Awareness Day to bring attention to GIST and
other rare cancers, utilizing the viral nature of social media, through a
series of activities that let people highlight the most special, unique parts
of themselves.
We wanted to know if you were doing something in
your country to celebrate GIST Awareness Day?
If so, you are welcome to join in the
#ShowUsYourRare campaign.
Information can be found here: https://liferaftgroup.org/gist-awareness-day/
Otherwise, we encourage you
to do something that day.
8th June 2015
Amma (Viji Venkatesh) to Piga
 The plans for GIST Awareness
Day 2015 sound wonderful – I especially like the Mosaic idea.
#ShowUsYourRare is a great way
to encourage participation and promote awareness as well as combat stigma. I am
already having ideas begin to form on how to mobilize our GIST community of
patients, caregivers and physicians.
Good to have the advance alert
8th June 2015
Amma to Max Team
Among other things which I leave you guys to think and plan,
it would be a good idea to talk about this at the June 13 meeting and get some
interesting photographs of those who are ok with having their pictures taken
for the Mosaic –
You could get folks to take selfies and send them too ….keep
thinking
8th June 2015
MS to Max Team 
I have
read the material which is available on the Life Raft website. Request you all
to go through it – https://liferaftgroup.org/gist-awareness-day/ 
Can
we all sit together may be @ 4 and note down the ideas/plans to celebrate GIST
awareness day? 
9th June 2015
Max Team to Amma
We have two ideas which we can incorporate in our GIST meet
on 13th June, 2015.
1.      Show
us your rare – Please find attached some GIST flyers. We can make these flyers
with different rare images and some description about the same. We can click pictures
of patients holding a GIST Flyer and post it on The Life Raft Group.
2.      During
the meeting we will explain the meaning of rare with a power point presentation
and ask them to send us their pictures by 13th July, 2015 
      10th June 2015
We will make a standee for the GIST awareness day and also
use it during the meeting on 13th June for the pictures along with
the flyers.
12th June 2015
Finalized –
Click a “selfie” with your “rare”: A specific
feature or characteristic or liking that is special to you … Rare and precious
to you 
This day is an opportunity to stand in solidarity with the
patients and their families living with GIST
13th June 2015
Quarterly GIST meeting at Tata Memorial Hospital
30th June 2015
Blog post – GIST AWARENESS DAY
1st July 2015
Report  sent to LRG (link for pictures of 13th June GIST meeting)
2nd July 2015 
Sara Rothschild (LRG) to Dr.
Nikhil / Max
Thank you for sharing with
us a wonderfully written report on GIST Awareness Day in India along with the
amazing photos!!
It is wonderful to hear
that you continue to support the GIST community in India and that you
participating in this awareness campaign.
As always, please let us
know if you need any other information from us and we would be happy to share
it.
2nd July 2015
Amma to Max 
Subject: FOR GIST
AWARENESS DAY
  • Send our plans to yahoo group id
  • To the city chapter leaders group
  • Post on both FOM Closed and Open FB page
  • Announce in website
  • Try and reach out to all our GIST patients via the
    methods I have listed above 
2nd July 2015
Email sent to all FOM
city leaders
The Max Foundation and Friends of Max constantly
strive to create awareness regarding cancer, especially about CML and GIST. We
have another opportunity to do so.
The month of July is observed as Sarcoma Awareness
Month and the 13th of July is celebrated as GIST Awareness Day (GAD).
The Life Raft Group (LRG) has launched a campaign
called #ShowUsYourRare to bring attention to GIST and other rare cancers,
utilizing the viral nature of social media, through a series of activities that
let people highlight the most special, unique parts of themselves.
Here’s what we all can do to be a part of it!
Identify something that you feel is rare or special
for you, and take a selfie with it. Tell us why it is rare for you. If you do
not wish to share a picture, simply write to us what you consider a rare and
why.
Send your picture/text to us at friendsofmax@gmail.com or
through whatsapp to _____ ___ by the 7th of July
We will share this picture with the world through the
FOM website and Facebook page. 
Come let us join hands and celebrate GAD. 
Attached are a few images from the GAD celebrated during the Mumbai FOM GIST
Support group Meeting held on 13th June 2015.
7th July 2015
Email to MaxIndia team
Please send us your selfie with
rare for #ShowUsYourRare campaign.  
It will be great if you can
send us your picture by tomorrow.
13th July 2015

THE
DAY ARRIVES ………………..

From Prabhat Kumar Sinha (Manager-Patient Relations and Communications –
Novartis Oncology)
Dear Dr.
Nikhil and Friends of Max Team,
On GIST
awareness day conveying best wishes to your efforts in raising awareness and
provide a platform for persons living with GIST- participating in few meetings
I could see this forum growing and supporting many in need.
Keep up the
good work Team.
14th July 2015
Max Team to Dr. Nikhil
Please
find link below to some more pictures as part of our celebration of GAD
#ShowUsYourRare.
You can share the link with the Life Raft Group.
We have posted the pictures on our FOM FB page and
also on the FOM website. 
14th July 2015
From Sara
Rothschild (LRG)
What incredible photos and
messages!
You truly captured
what we wanted to express on GIST Awareness Day!
Thank you so much for being
part of this important awareness campaign.
It is so nice to see what
makes people so unique and special from all around the world.
Cheers to you and your
incredible team!

14th July 2015
From Piga (LRG)
What an amazing work you
all did!
Congratulations!!!
A big hug to each one of
you
14th July 2015 
Amma to Sara
/ Piga (LRG)
We should say thank you to you all for showing us the way to encourage
the patients and the families to involve themselves in this kind of an
exercise. 
When we had our usual GIST support group meeting in early June the team
explained the concept of the day and the theme and encouraged the participants
to give it their all…we all reached out via social media and our e mail
groups as well as working with the patients who came to the office in Bombay .
It has been so gratifying to see the messages and the pictures. I hope
you will check out the FB pages and the website.
To me the biggest and best take away from this is that patients facing
and coping with other cancers ( like CML in the FOM group) are beginning to
pause and look at their friends with GIST and learning and understanding what
it means to be a GIST survivor. 
We are in the next coming months planning such GIST specific meetings in
other cities in India as well. 
14th July 2015
From Erin
Adding my
congratulations to Nikhil, Vijaya and all the Friends of Max members for your
participation in GIST Awareness Day!  What a wonderful way to bring
everyone together in the community.
Cheers to all

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