Home » Awareness » NETwork with Ronny © – Newsletter April 2017

NETwork with Ronny © – Newsletter April 2017


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:

  1. 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.
  2. 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:

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

the first question to the first ever joint patient-physician symposium. Hardly any voice due to a winter cold

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.

Instagram

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’)
  • Twitter3836 / 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

Hey, I’m also active on Facebook.  Like my page for even more news.

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

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Check out my Podcast (click and press play)

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

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4 Comments

  1. Maryann Prato says:

    Hi Ronny, I, too, refuse to join the “herd” I recently left all the so called “support groups” on Facebook. Found them to be superficial, shallow and full of misinformation. I only belong to the group you and Rosie are affiliated with.

    Liked by 1 person

  2. John Yamnicky says:

    You sir, are certainly among the best.

    Much thanks,

    John(patient)

    John D. Yamnicky Pentagon Realty Services, LLC 4491 Cheshire Station Plaza, #120 Woodbridge, Virginia 22193 703.795.9190 888.429.2397 fax

    Liked by 1 person

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