CBD for CTF

CBD for CTF

CBD for Closer to Free

As many people know, for the past few years I have sold various products in order to raise money for charity. I donated gift baskets of products to raffles when I was a sales rep for NYR Organic a few years ago; I donated my profits from the purchase of a certain book about coping with ocular melanoma from customers who used my Amazon Affiliate Link; and as an affiliate of PuraVida I donated the profits from the sale of certain curated selection of jewelry to a number of different fund raisers. A few experiences last year helped me narrow down and focus my fundraising efforts going forward.

I am proud to plan to volunteer at the Closer to Free Ride in person at the Yale Bowl in September. And between now and then I am also working to raise funds for my husband Paul, who is riding 100 Miles to raise $1,000 in my honor, to benefit Smilow Cancer Hospital and Yale Cancer Center.

In January I joined the health and wellness company Vitalibis as a Brand Ambassador. The Vitalibis products are focused on full-spectrum hemp CBD Oil!

Between now and ride day, September 7th, 2019, I am donating any profits I earn from the purchase* of our Soothing Body Cream to Paul’s Closer to Free Ride fund raising!

Vitalibis Soothing Body Cream is a topical rub which provides a cooling / warming sensation to targeted areas, while leaving your skin feeling moisturized. Includes a proprietary blend of oils, including Vitalibis’ premium full spectrum phytocannabinoid rich hemp oil with approximately 400mg of naturally occurring cannabidiol (CBD) and other cannabinoids per tube. Perfect for massage therapists, sports practitioners, athletes and individuals with active lifestyles.

Let the training begin!

 


FTC DISCLOSURE: I was not compensated for this post. This website contains affiliate links and I will be compensated if you make a purchase after clicking on one of the links.

*Eligible purchases must be made from my website https://www.vitalibis.com/sueapito/

Another Year Closer To Free

Another Year Closer To Free

I am really looking forward to participating as a Volunteer with the 9th Annual Closer to Free Ride! This will be our second year participating, me as a ride day volunteer at the Yale Bowl and Paul riding to raise donations. This year he will be riding 100 miles! Here is a photo from the finish line last year after finishing 65 miles.

The still frame at the beginning of this video is actually my medical oncologist, Dr Sznol, who also rode as a fundraiser last year! Watch to enjoy some highlights from last year’s event.

Thank you to everyone in advance for their donations to Closer to Free, and thank you to Paul Apito for riding in my honor!

#CTFRIDE

Eye Tumor Research Foundation

Eye Tumor Research Foundation

Among the many benefits to being engaged in social media online is the opportunity to learn about new research and non-profit organizations devoted to research! When I was first diagnosed and treated by Dr Carol Shields at Wills Eye Hospital things happened very fast and were quite a blur!

I just learned of a ocular melanoma charity affiliated with Wills Eye Hospital – the Eye Tumor Research Foundation.

CONTRIBUTIONS MADE TO THE FOUNDATION ARE SPECIFICALLY FOR ONE PURPOSE—TO PROVIDE SUPPORT FOR RESEARCH IN THE INVESTIGATION OF EYE CANCERS AND EYE TUMORS

NOTE: The one statistic from their brochure (below) is “Fortunately, most patients do not develop metastatic disease. Overall, 20% of patients develop melanoma metastasis but it may be more or less depending on other factors.

Every other resource I have seen quotes 50% as the average number who develop melanoma metastasis (aka METs) but that statistic is usually qualified by saying 50% will develop METs within the first five years. This 20% may refer to over their lifetime, and that would be very good information to know!

CLICK TO DOWNLOAD PDF BROCHURE

Make sure to check the charity you are researching at charitynavigator.org to verify their status as a legitimate non-profit charity and to review their most recent tax returns, which often outline where donations have been spent in the past.

#GivingTuesday

As you choose where your charitable donations go I’m sharing a post I made earlier this year: http://myeyeblog.info/choose-your-charity-wisely/

Everyone has something that speaks to them – pets, the environment, a disease like cancer that effects them or someone they love. The most important thing is to give. There are some opportunites through Facebook and PayPal where the non-profit organization can earn matching funds, so it might be a good idea to visit the Facebook Page for the charity of your choice before you donate. #GivingTuesday

Choose Your Charity Wisely

When you make a charitable contribution, do you always check to see where your donations go? Is helping fellow patients with their medical expenses your interest? Or education? Perhaps you are a fan of the Awareness Campaigns with their many colored ribbons! Or research on the cause of a particular cancer?

My primary interest is research toward a cure for Ocular Melanoma. With this narrow focus, there are a few choices. Here’s some food for thought.

“Since 2012, over $1.4 million has been secured specifically for OM research and 9 different research awards” — MRF’s CURE OM initiative

https://www.melanoma.org/research-center/cure-ocular-melanoma/ocular-melanoma-research

So in seven years, Melanoma Research Foundation has received approximately $32 Million* from 2012-2018, and only contributed $1.4 million Ocular Melanoma research.

[*This figure assumes the organization had gifts, grants and contributions of at least $5 Million in 2017 and in 2018 as they have averaged in the five years prior.]

I was surprised to learn this. I suspect a lot of Ocular Melanoma patients and friends are as well, with all the walks and galas and other six-figure fundraising successes… $1.4 Million seems a little “light” to me.


The Ocular Melanoma Foundation is another charity, but one which is completely focused on Ocular Melanoma as their Mission. Their only grant last tax return was for $25,000 and went to an organization which is not solely OM focused, the American Association for Cancer Research.

Their website says “we are able to put most of this money to work funding research through our $50k a year AACR JIA grant program” but their tax return does not seem to support this figure. However, that may be because they perhaps donate on a calendar year basis, but report their taxes using the accrual basis of accounting.

A search of the AACR website shows there is something called the “AACR-Ocular Melanoma Foundation Fellowship” and one can assume that is where their grant money ends up.

OMF also gave 16 patients financial aid for treatment-related travel and 3 people financial assistance for prosthetics.


Tomorrow on the TV Show Dr. Oz, four self-appointed representatives of the group of patients who have a connection to Auburn University and who also have Ocular Melanoma, will be guests.  These women have had extraordinary success getting themselves on the National News, featured in many markets on Local News, and even had a large feature story in People Magazine.  They have a Facebook Page and also ask for donations at their public appearances and through their website called the eyepatchchallenge.org. They are not themselves operating as a non-profit organization, nor have they affiliated with any ocular melanoma organization or charity. They chose instead to direct those donations to a local organization called The Community Foundation of East Alabama. Their fundraising efforts are to raise money for the research efforts in Auburn, Alabama. They published the following specifics “Dr. John Mason, Ocular Oncologist in Birmingham, Alabama has agreed to lead the research efforts. He outlined a three-arm effort which would require a budget of $135,000. The three arms of research would include genetic or germline testing, geospatial testing, and environmental testing.” The group has not made clear whether all the patients who have a connection to Auburn University (the latest count from them is 47 patients) will be able to obtain this bloodwork, or whether this fundraising is just for the benefit of the four ladies we see in the media.  The environmental testing obviously will all be local, focused totally on Auburn, Alabama.


A Cure In Sight™ for Ocular Melanoma along with a generous financial gift from Jack Odell and John Dagres, are donating research funding of $100,000 to the Harbour Ocular Oncology Laboratory at Bascom Palmer Eye Institute and Sylvester Comprehensive Cancer Center specifically “to investigate a strategy for determining the pathogenicity of “variants of unknown significance” in the GNA11 gene in UM development and metastases.”

My tumor genetic testing showed “Somatic variants detected in the tumor: GNA11 Q209L 34%”. So that specific research project is of special interest to me.

NEW Research Funding to Harbour Ocular Oncology Laboratory

UPDATED – DISCLOSURE: in 2018 I had the opportunity to work for ACIS freshening up the website, publishing articles I personally wrote, and other technical website updates both as an independent contractor and as a volunteer; I also sold some products through my affiliate network and donated the proceeds to ACIS.  The total was unfortunately only about $10.


Starting mid-December and into 2019 – all of my fundraising efforts are going to be for Smilow Cancer Hospital through the Closer to Free Fund rather than to charities focused on ocular melanoma.

Blindness Awareness Month

OCTOBER is Blindness Awareness Month

I am legally blind in one eye – the one with eye cancer. My visual problems are not actually from the ocular melanoma tumor, but from radiation damage as the result of treatment to save my life.

I had no visual symptoms before my diagnosis, my cancer was diagnosed at an eye doctor visit to get a new eyeglass prescription. It is important to get regular, dilated, eye exams because while this cancer happens most often within the population who has fair skin and light eyes, it can happen to anyone.

Blindness is not actually the worst part of this cancer, it is the fact that it spreads in 50% of patients and when it does, without treatment life expectancy is months. With treatment – it can be years. But the longer the tumor is in the eye the longer it has to spread to the bloodstream where it remains dormant.

Mine spread 2 weeks after my 5 year anniversary. I’ve had three treatments so far: immunotherapy (ipi/nivo) which almost killed me; microwave ablation of one tumor which killed that one tumor; and immunoembolization, which I won’t know the outcome until my regular 3 month liver MRI in November. Then I will either do nothing, get microwave ablation of more tumors, or consider a clinical trial.

I share my story on my blog and on Facebook in order to do fundraising and raise awareness of the importance of regular eye exams FOR EVERYONE!


How You Can Help: Donate to YOUR Favorite Charity

Photo Title: Golden and Lab
Two 8-week-old Seeing Eye® puppies pose with a leather Seeing Eye harness that they will one day grow to fit and use to lead someone who is blind or visually impaired.

http://www.seeingeye.org/you-can-help/

 

A Cure In Sight™ for Ocular Melanoma eye cancer patients

https://acureinsight.org/

Fundraising Jewelry Selection

Fundraising Jewelry Selection

My favorite way to fund raise is to as an Affiliate Marketing partner.

I recently announced that I plan to continue raising money for my favorite Ocular Melanoma non-profit charity, A Cure In Sight™ through the sale of a Pura Vida necklace, ring or bracelet displayed below!

I specially curated this selection as the perfect synergy between my efforts to raise awareness about eye cancer and my efforts to raise money for cancer research.

Starting immediately I will donate any commissions* I earn from the purchase using the links below, of this adorable good luck eye charm necklace or “evil eye” ring or the Negu: Never Ever Give Up! bracelet which is one of the Pura Vida Charity Collection bracelets. This means 10% of net profits of this bracelet will be donated to NEGU by Pura Vida, in addition to me contributing my commission to A Cure In Sight!

#NEGU is inspired by 12 yr old Jessie Rees (4/8/99-1/5/12). “Encouraging and supporting kids/families fighting cancer to Never Ever Give Up!

Click the links above or the photos below to go directly to the Pura Vida web page for each item!

The Pura Vida Evil Eye Necklace makes every day your lucky day.
Nix the negative vibes with the PuraVida Evil Eye Ring
10% of net profits of this bracelet will be donated to NEGU by Pura Vida

*I am an affiliate marketing partner with Pura Vida bracelets and jewelry, which means I earn a small commission on the purchase of products made from links directly from my website, myeyeblog.info. This trio of products are the only items which will earn donations for this charity from my commissions.

Damon Runyon Cancer Research Foundation

This is the first time in a couple years that I am not a virtual participant in the William Raveis Ride + Walk fundraiser for Damon Runyon Cancer Research Foundation. But I still want to support the event even though I am not actively fundraising and participating.

So, visitors to my website are invited to donate to the fundraising efforts of Heidi Summa, one of my favorite people!

Go Heidi!!

ACIS Patient Brochure

I wanted to bring readers attention to a wonderful Brochure, produced by A Cure In Sight™. I requested printed copies and gave them to my Ocular Oncologist Dr. Lim and she called me to say how wonderful she thought they are!

I’ve uploaded a small letter sized version just for awareness purposes if someone wants to print one at home  (click image below to open)

You may email contact@acureinsight.org or call them at 919-885-5264 if you would like to get professionally printed copies of this great brochure to give to your Ocular Oncologist, too!