Hi NETworkers!
Welcome to my sixth ‘Community’ newsletter. This is April 2017’s monthly summary of Ronny Allan’s Community news, views and ICYMI (in case you missed it!).
Highlights
There are two main highlights for April which stood out for me:
- The publication of my WEGO Health Award PODCAST. This was a radio interview prior to the announcement that I had won the WEGO ‘Best in Show Community’ award. It was designed around a red carpet scenario where the nominees are entering the award ceremony (everything in the virtual world of course). If you missed it, you can listen to it by clicking here.
- The announcement of new USA database figures for incidence and prevalence of NETs. This confirms it is now mathematically impossible for NETs not to be a rare disease in 2017. I’m not in any way surprised by the authoritative data provided and I’ve been forecasting this for 2 years. You can read all about the conversion of NETs from rare to less common by clicking here. I truly believe a new and more compelling awareness paradigm must now be adopted by the community.
April was a slower month in ‘new’ blogging terms due to a number of external projects and a continuing flow of private messages. Not forgetting two weeks of lower back pain (don’t forget, I’m a patient too!).
I don’t have an issue with private contact but please note my disclaimer. However, despite a low number of brand new blogs, I still managed to accumulate the biggest monthly blog views ever. ……..Thank you all so much ♥
New (or significantly updated) Blogs Published
Due to the vagaries of Facebook inner workings, some of these may not have even shown on your Facebook timeline. So, ICYMI …….here’s a summary with links:
- The trouble with the NET (Part 3) April 27, 2017. Fed up of those ‘miracle cures’ and dodgy headlines?
- Diagnosed with Neuroendocrine Cancer? 10 questions to ask your doctor April 25, 2017. Really good viewing figures and feedback received on this one.
- I’m now a poet 🙂 check out my “Ode to Lanreotide”
- New NET Cancer Grades to be introduced. Check out this updated post with advance notice of what’s coming.
- Poker Face or Cancer Card. Some of the challenges facing life with incurable cancer
- Don’t believe the hype – 10 Neuroendocrine Cancer Myths debunked April 6, 2017. Really good viewing figures and feedback received on this one. Fed up of reading things which you know are wrong?
- There’s no such thing as a ‘tickbox’ Neuroendocrine Cancer patient April 4, 2017. There isn’t!
- Man versus mountain. I set myself a physical challenge on April 2, 2017 by walking up the biggest hill in southern UK. ‘Brain Medicine’ for me!
- NETwork with Ronny © – Newsletter March 2017 April 1, 2017. ICYMI
Other News in Apr 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.
- 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). 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. Currently 192 subscribers – up 20% on last month.
- I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here. Other irons are in the fire but unable to bring you firm news just yet.
- I’m making new friends in the interventional radiologist community and am waiting on a video featuring a NET Patient (will bring you details in due course) and I’m learning more about these technologies from reading their tweets – I had no idea how many different jobs these guys do! I’m also seeing an increase from the Pathology community. The trailer for the documentary which will feature a NET Patient can be found by clicking here.
- I’m proud to have been asked to become a ‘Community Champion’ on the Macmillan Cancer Support Forum helping outliers from the NET community there. I’ll be reporting more on this in the coming weeks.
Patients Included. A new campaign for 2017. I was excited to have been invited to the first ever joint Patient-Physician symposium at the annual ENETS conference in Barcelona 8 – 11 March. I have really good information which will feed into my blogs, either as updates or new blogs. This new blog is a result of attending this symposium but it’s from an existing campaign run along the ‘Consequences’ campaign run by Macmillan Cancer Support for all cancers. In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life
Social Media and Stats
Blog Milestone. In Apr, I tipped over 275,000 views! Thank you all so much ♥ Keep sharing!
Facebook Milestone. I’m aiming for 5000 by year-end and this is on track. 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.
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
Figures
- Facebook – 4522. 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). Please also join my 2017 awareness campaign event here (select ‘Going’)
- Twitter – 3836 / 2955 Follow me here @RonnyAllan1 / @NETCancerBlog
- Total Blog Views: 275,904
- Blog with most views: 8261 – The Anatomy of Neuroendocrine Cancer
- Most blog views in one day: 2043 on 15 Jan 2017. Why the spike? ….. “The Anatomy of Neuroendocrine Cancer”
- Most blog views in one month: 19,303 in Apr 2017. Why the spike? …. too many to list – see above!
Where did Apr 2017 Blog views come from? – Top 11 countries: Large increase from Germany.
For interest. the 10 Ten Facebook followers by Country – Germany now appears!
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 the sharing gives me a bigger platform. A bigger platform generates more awareness.
Thanks for your great support in April. 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!
