Vitalibis.Ambassador.SueApito on Facebook!

Vitalibis.Ambassador.SueApito on Facebook!

I am going to continue writing articles about CBD Oil and hemp oil products in addition to other health and wellness topics, but I feel it is important for my new #sidegig as a Vitalibis Brand Ambassador to have a separate Facebook Business Page.  Check it out – I hope you “LIKE” it!

facebook.com/Vitalibis.Ambassador.SueApito

Uveal Melanoma Support New England

Uveal Melanoma Support New England

Late last week a member of the Ocular (Uveal) Melanoma Support group on Facebook, suggested some new state or regional groups. I offered to create one for New England…and here it is!

Please feel free to share facebook.com/groups/UvealMelanomaSupportNewEngland

The rules are simple:

  • PATIENTS ONLY – You must have Uveal Melanoma (aka Ocular Melanoma) to join this group. In addition, your Facebook Profile must have a real name and profile photo which we can confirm is that of a “real person”.
  • NEW ENGLAND – Patients need to either live in New England or be patients of doctors/hospitals in New England to be a Member of the Uveal Melanoma Support New England Facebook Group
  • FUNDRAISING – We will allow promotion of Fundraising Events or Activities such as Walks or Runs or the Sale of books or jewelry on Weekends only.
  • PRIVACY – Please do not share the names of fellow Group Members with anyone and anything posted in the group should stay within the group, with the exception of Public Links to Facebook Pages or other public Web Sites.
  • PHOTOS | GRAPHICS – Please do not post graphic photos of eyes, surgery, wounds, etc.

To request to join, there are three questions which must be answered:

Do Your Part!

There has been a lot of talk in the Ocular (Uveal) Melanoma Support Group on Facebook that I belong to, about the impact of the disappointing Dr. Oz show about ocular melanoma last week. Yes, the show had misinformation (such as misleading the public about where the patients lived – they did not all live in the same dorm). But the overwhelming consensus I gathered from the discussions is, that even if one person gets an eye exam who might not otherwise get one, then the show was a success.

Every person reading this post, has the opportunity to raise awareness so that one more person might get a dilated eye exam they might otherwise not get, and potentially reach someone who gets an earlier diagnosis than they might otherwise.

You don’t have to be a guest on Dr. Oz to make a difference!

Tips for Raising Awareness

  • Participate in a fund raising walk, run or ride and invite your social network to donate
  • Follow Facebook Pages: LIKE them; Comment on the articles; and SHARE to your profile wall!
  • Share your story! This can be hard for many people both socially, emotionally and technically!
    • You can speak about your experience and encourage dilated eye exams on Facebook
    • You can take it a step further and Blog about your experiences like I do here*!

*This is why I blog here at My Eye Blog.  I do share my story on my Facebook personal profile and I have shared my story when I have participated in fundraising efforts in the past.  But I wanted a place to create links to my favorite websites, and have a place to write about my opinions about topics related to cancer aside from in online Support Groups; but mostly to have a place to generate donations in between the walks and rides and runs!

I have been a blogger since the days of websites which were either white on black, or black on white!  I joined my first online discussion Group back when Oprah first went online with her forum.  My background is computer graphics but these days, if you can write an email, you can Blog!

As a side job, have two websites – at My Do-It-Yourself Web Services I sell domain name registrations and hosting plans; at Eastbury Design I promote my freelance services and have some articles to help my clients learn how they can do it themselves!

Are you interested in Blogging?  I recommend WordPress as the free content management program which means you don’t need to learn any coding or purchase any stand alone software in order to design your website.  Here is a link to an article I wrote on the difference between Pages and Posts, important to understand if you are using WordPress!

What are Pages? What are Posts?

 

Common Sense and Fair Use

Yesterday I had an experience which I can only describe as a shocking example of how certain non-profit organizations conduct themselves in ways which are not only hurtful, but hateful. Is the competition for donation dollars that dire that they have to pretend other non-profit organizations don’t exist, out of fear that someone might choose to donate to “the competition” instead?

Is the challenge to increase Membership in these Facebook Groups really that important that these organizations need to delete posts which even mention that other Support Groups exist? Seriously, use some common sense – there really are enough patients with ocular melanoma to go around, in spite of this being an extremely rare cancer!

So, here is what happened to me on the Facebook Group run by the Ocular Melanoma Foundation. A Member posted offering to recommend his doctor for the list of recommended doctors. Unfortunately this Member did not realize that OMF has not updated their list of OM Specialists since 2016.

Another Member posted saying that I had recently updated a list of doctors and would be happy to add his recommendation.

I commented on that post and wrote that the database I had worked on was actually a project for another OM Support Group and was available to view on my Blog, but that I was not going to post a link to my blog because  one time in the past I included a link to my blog (which by the way, used to include links to the OMF website and their Facebook Group – prior to yesterday that is) and that comment was deleted. But I said feel free to look on my personal profile for a link to the blog. So no links, nothing which violated the rules of the Group.

The comment by the other Member referring to me, and my comment following up on that, were both deleted.  I posted:


Well, I sure got my reply! My follow up comment above was also deleted, and this official OMF reply took it’s place:

Curious, this OMF Representative claims to know nothing about me yet they make it clear to everyone in the Group that they consider me a “nobody”! And claim to have “no idea what this is about” but yet they know the file has a copyright notice at the bottom of the PDF document! How is that possible?

But to go on and publicly accuse me (and by extension the Copyright owner, A Cure In Sight™ and the volunteers who worked so hard to create the original database I was able to work from, as well as the generous Members of the Ocular Melanoma Support Group on Facebook who took their time to review the excel file, proofread it, and send me corrections and additional information) of doing something that “does not help anything or anyone” is simply unacceptable.

You know what doesn’t help anyone?  A non-profit organization that can’t even keep their own list of doctors up to date.  That that includes MRF/CURE OM.  Their lists are completely out of date, too!  Click these links and see for yourself (that is if you can navigate around their website and find this information at all!)  Here is what the buttons look like:

So yeah. I am a nobody OMF. You are right.

I’m a nobody with ocular melanoma which has metastasized to her liver.

So I know my time is limited and wanted to contribute something which may help someone newly diagnosed to find an ocular melanoma oncologist or find a medical oncologist who can help them navigate the scans and bloodwork, and if the worst happens, be a part of their care team who guides them through treatments and perhaps, clinical trials. Your dismissive treatment and hostility speak more about your core values and corporate culture than they do about me.


True success does not occur by making efforts to have others fail. Real leaders go out of their way to emphasize both teamwork and the importance of collaborative work.

Ocular Melanoma DR list


FAIR USE: “Fair use allows limited use of copyrighted material without permission from the copyright holder for purposes such as criticism, parody, news reporting, research and scholarship, and teaching. ” http://www.baylor.edu/copyright/index.php?id=56543

So as long as the use was what is known as “Fair Use”, no one ever had to request permission from ACIS to copy the Doctor List. Some examples of Fair Use are sharing the file for a non-commercial purpose as we are here; downloading it as a personal reference; or even another nonprofit organization using it for educational purposes!

New Facebook Page!

There are so many articles and newsworthy items that I see on my Facebook Wall, or which are shared in Facebook Groups, that I decided to create a Page to go along with this Blog!

Please feel free to LIKE and SHARE and of course invite anyone who you think might benefit from the resources I share there. I am very active on Facebook and so feel free to comment on my Page!

facebook.com/MyEyeBlog