Rare Disease Day in the MRF Community

As the MRF observes Rare Disease Day on February 28, 2022, we celebrate the courageous and inspiring members of our community who are living with a rare melanoma subtype.

Monique (Acral Lentiginous Melanoma):

“It is important for me to be an advocate and to help bring awareness to a diverse group of people on how melanoma can affect everyone. I was diagnosed with a melanoma tumor in my left thumbnail when I was eleven years old.” Learn more about Monique’s story here.

Michelle (Ocular Melanoma):

I have ocular melanoma and was diagnosed on March 5, 2018. It started as a routine eye exam. I was not experiencing any pain or vision loss. In retrospect, I did have symptoms of a retina detachment, circles of light moving in the upper periphery, however, I didn’t think anything of that. My optometrist noted the issue during the dilated exam and referred me to a retina specialist. That doctor referred me to Wills Eye Hospital in Philadelphia, which is 4 hours away from my home in Virginia. I had plaque radiotherapy 10 days after my diagnosis.  
 
I just finished my regular checkup with Wills Eye. My tumor, which was medium-large in my right eye at 16mm x 8.6mm, is still dead and stable at 4.6mm. My semiannual liver MRI was clear and I am currently NED. I have lost a considerable amount of vision and am at Counting Fingers. I had cataract surgery in September 2020 and have been dealing with radiation retinopathy since that time. In the 4 years since I began this journey, I have become a strong advocate for those with OM, I help to raise awareness of this rare cancer and also pivoted my career to support those also on a cancer journey. 

Jill (Ocular Melanoma):

It has been a decade since I was diagnosed with ocular melanoma while pregnant with my first child, John. I chose enucleation, or the removal of my eye, to avoid any treatment complications to the baby in utero. Two years later, the melanoma spread to my liver. Now, after multiple rounds of immunotherapy and the creative thinking of ocular melanoma experts at Thomas Jefferson Hospital, I am thriving! I went on to have another biological son via surrogacy, hold a position as Chief Human Resource Officer at a Fortune 500 Company, learn new sports with my husband Jeff, and most importantly, I am outrageously grateful for an ordinary day.  

The MRF is committed to supporting those fighting rare melanoma subtypes, and leading the way to new research, improved treatments and increasing education and awareness about all forms of melanoma. This work is only possible with your support; please consider a tax-deductible gift today:

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