Hi NETworkers!
Welcome to my monthly ‘Community’ newsletter. This is September 2017’s monthly summary of Ronny Allan’s Community news, views and ICYMI (in case you missed it!).
NET News
The following news items may be of interest:
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Blog Site?
Due to the vagaries of Facebook inner workings, some of these may not have even shown on your timeline. So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.
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Other Activity
September was a slower month in ‘new’ blogging terms mainly due to personal activities (holiday) and the consequences of being ‘contactable’ by a large internet footprint! Striking a balance remains difficult, I’m keen to support and advocate but as a patient, I also need my own time. I’m currently seeing a trend of low ‘new’ blog months, mainly due to external projects and a continuous stream of offline messages from patients (more on this later) – my strategy is constantly under review. However, despite a low month for brand new blogs, I still managed to break through 20,000 views for the 4th month in a row…….. Thank you all so much for the support.
Please join my 2017 awareness campaign event here (select ‘Going’)
I continue to receive a steady flow of private contacts, mainly from patients seeking information. I don’t have an issue with private contact but please note my disclaimer. Please also note that I cannot accept telephone calls on a one to one basis. Also, the number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.
Awareness Activity in September 2017
New Audiences for NET Cancer. From Day 1, I said it was my aim to find new audiences for NETS rather than just share stuff within our own community.
- Article features. I was featured in a well shared and positive article entitled A revolution in the treatment of Neuroendocrine Tumors. A very positive look at the new treatments coming through. I didn’t agree with some of the content but ‘hey ho’ I cannot control what others write. You can check out the article by clicking here.
- Twitter.
- I took part in a patient chat on twitter where I was able to contribute to some general cancer questions. It was attended by many patient advocates representing many different conditions. The taking part in these activities is time-consuming and hard work but it does allow me to grow as a general patient advocate and to occasionally mention “Neuroendocrine Cancer” spreads awareness to new audiences. A summary of the conversation can be found here.
- I’m ‘extremely’ active on twitter and I find a lot of my research stuff there. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). In Sept, I tweeted 109 times on my personal account which lead to almost 75,000 views. I was mentioned 78 times by other tweeters and gained 68 new followers. My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter. Check it out – click here.
- Daily Newsletter from my twitter feed (Nuzzel). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email. Currently 336 subscribers – up 12% on last month.
- WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader. WEGO is a fantastic organisation!
- Macmillan Cancer Support. I’m proud to be a ‘Voice’ and ‘Community Champion’ on the Macmillan Cancer Support Forum. In addition I help ‘outliers’ from the NET community there. There are only 27 champions for a site supporting hundreds of thousand patients – it’s a community of communities. I’ll be reporting more on this in the coming weeks. This is the biggest cancer support organisation in the UK and I’m intent on developing relationships with various departments in this fantastic organisation. On August 30th, one of my blogs made their “top picks” generating some NET awareness – check out Living with Cancer – 6 tips for conquering fear. They have recently agreed to feature NETs on 10 Nov 17.
- Cure Magazine. I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now. I’ve not contributed yet but clearly they will be posted on all my social media outlets for you to read. Cure Magazine has a readership of 1 million. Click here to read more.
Speaking Engagements
- On 5th October, I’ve been invited to speak for around an hour at the Cardiff (South Wales) NET Patient meeting (moved from July due to forecast low attendance) Things are starting to happen in this area and I already know their NET Specialist Dr Mo Khan who is working hard on behalf of patients. I’m really looking forward to visiting and talking to this group.
Writing and other types of Engagement (external) – watch this space as I’m working on quite a few projects concurrently. I’m currently in a pool of patients who may be featured in a UK national, fingers crossed.
Social Media and Stats
Blog Milestone. In September, I’m very close to 380,000 views! Thank you all so much ♥ Keep sharing! On track for 400,000 by end of the October.
Facebook Milestone. I would love to achieve 6000 followers by the end of 2017 but this will be a challenge. The Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested.
Also check out my sister Facebook sites here (click on ‘Like’)
These are fallback sites to counter the Facebook algorithm whereby you may not see all my posts on the main site:
Ronny Allan’s Community
Neuroendocrine Cancer Awareness and Networking
I’m expanding into Instagram to see how that goes. I’ve amassed over 200 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go! You can follow me here: Click here to go to my Instagram page
Community Statistics (the measurement of my efforts on your behalf)
Figures
- Facebook – 5220. This is a key outlet for my blog – please encourage others to like my page (if you’d like to know how to use your Facebook to invite others to my page – let me know, I can provide you with a step by step approach).
- Twitter – 4153 / 3195 Follow me here @RonnyAllan1 / @NETCancerBlog
- Total Blog Views: 379,320
- Blog with most views: 12761 – The Human Anatomy of Neuroendocrine Cancer
- Most blog views in one day: 2043 on 15 January 2017. Why the spike? ….. “The Human Anatomy of Neuroendocrine Cancer”
- Most blog views in one week: 7538 in July 2017.
- Most blog views in one month: 24142 in July 2017. Why the spike? … these blogs here:
WOW! – that’s an amazing amount of awareness and hopefully, support for others. However, I cannot do this without you guys liking, commenting and sharing! The likes give me motivation, the comments (and private messages) give me inspiration (or at least a chance to explain further) and they also keep me humble. The sharing gives me a bigger platform. A bigger platform generates more awareness.
Thanks for your great support in September. Onwards and upwards!
Thanks for reading
Ronny
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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!
