Patients Invited to join Support Group!

Patients Invited to join Support Group!

Earlier this week, I was thrown out and banned from the Facebook Support Group for Patients with Ocular Melanoma whose cancer has metastasized. I shared all the details with the folks in a support group I started for patients in New England, New York and New Jersey. So I am not going to rehash the nonsense and drama here. Fortunately, I was given really good advice for how to deal with this situation.

I am proud to invite fellow Patients with Uveal (Ocular) Melanoma to join the newly expanded Uveal (Ocular) Melanoma Patient Support Group!


NOTE: Requests to join from people whose Facebook Profiles cannot be verified (profile photo, history of posts on their wall, friends, etc) or who do not answer the three questions AND agree to the Rules, will not be approved for membership.

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:

Ocular Melanoma in PEOPLE magazine article!

Another amazing media feature about Ocular Melanoma – this time in PEOPLE magazine! These four ladies from the Auburn “group” have managed to bring their story to the mainstream in such an amazing way! Congrats ladies!

https://people.com/health/auburn-university-alum-eye-cancer/

As this article states, the fundraising efforts of this group is “…focused on finding others from Auburn with the disease and raising money for research into its mysterious connection to the school…

The nationwide exposure, from newspapers to television news and now a story in People magazine, is extraordinary!

But as a patient going on six years into this cancer battle, one quote from the article was particularly upsetting to me. That the research efforts are “starting at square one” according to the doctor interviewed for the article.

“But there are four of us, two of us in treatment, would you expect cancer patients to raise money for their own research? That is ludicrous to suggest but that is what we we are doing, through eyepatchchallenge.org.”

Bad reporting!!  There are not four of them from Auburn, there are over 35 people diagnosed with ocular melanoma that have a connection to Auburn and I am quite sure some of them are also in treatment or participating in clinical trials, and sadly, some of them have died.

I know how that quote made me feel. I can only imagine how I would feel if I was one of the Auburn patients or the family of someone who died from this!

In addition, this is not the first group (not statistically a “cluster” even though most of us in this community think of it as a cluster); there is also another group of 18 cases of ocular melanoma that has been reported in Huntersville, NC since 2014. That was briefly mentioned in the video but not in the website article itself.

And of course, there are the hundreds of thousands of people like me around the world who also have OM. Why did the author never even mention the rest of us?

Also, It’s also not the first time cancer patients have raised money for research. I am pretty sure we’ve all seen the Pink Ribbon campaigns!

The facts is, ocular melanoma patients have been raising money for research into their rare cancer for many, many years. It is really unfortunate the author did not include information about these fundraising and research efforts, too.

I’ve been a virtual “walker” to raise money for the Damon Runyon Cancer Research Foundation through the William Raveis Ride + Walk annual event. 100% of the donations go toward cancer research, and some of that very research led to an immunotherapy drug used to treat ocular melanoma!

[2010 – Development of Yervoy – Led the clinical trials of Yervoy, a life-extending immunotherapy for metastatic melanoma approved by the FDA in 2011.] https://www.damonrunyon.org/our-impact/timeline

This is a one day, annual event which in only three years, raised over $1.5 Million for the foundation. I can only imagine the amount of money which would be raised for Ocular Melanoma Research if our little real estate broker’s annual event got the national attention the Auburn group has received!!

Now, I’m not participating this year but am proud to link to my co-worker Heidi who is! https://www.raveisridewalk.com/index.cfm?fuseaction=donorDrive.participant&participantID=3790

Everyone needs to find the charity which fits with their personal beliefs and interests; whether that is helping other patients with the costs of treatment, or raising awareness, or research.

I’m not sure why the article did not educate the public about the specific non-profit charities which are set up with a Mission devoted to raising money to find a cure for Ocular (aka Uveal) Melanoma; so here are some links to some of those additional OM organizations in case readers would like to make a donation:

A Cure In Sight™ (ACIS) acureinsight.org

Ocular Melanoma Foundation (OMF) http://www.ocularmelanoma.org/

CURE OM (a project of MRF) https://www.melanoma.org/research-center/cure-ocular-melanoma

And of course if you are in CT, you may want to donate to the annual Closer to Free fundraiser to raise money for Smilow Cancer Hospital/Yale Cancer Center, which includes funds going to aid melanoma research! Here is a link to my husbands fundraising page – he’s riding 65 miles to raise money!

https://www.rideclosertofree.org/participant/Paul-Apito