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Join A Cure in Sight, an ocular melanoma foundation, in sharing stories + raising awareness for OM patients and their families. Here we share information and insights on treatment, research, and living with ocular melanoma.
Episodes
Saturday Sep 17, 2022
Saturday Sep 17, 2022
A Cure in Sight is joined by Cynthia Hayes, author of the book, 𝙏𝙝𝙚 𝘽𝙞𝙜 𝙊𝙧𝙙𝙚𝙖𝙡: 𝙐𝙣𝙙𝙚𝙧𝙨𝙩𝙖𝙣𝙙𝙞𝙣𝙜 𝙖𝙣𝙙 𝙈𝙖𝙣𝙖𝙜𝙞𝙣𝙜 𝙩𝙝𝙚 𝙋𝙨𝙮𝙘𝙝𝙤𝙡𝙤𝙜𝙞𝙘𝙖𝙡 𝙏𝙪𝙧𝙢𝙤𝙞𝙡 𝙤𝙛 𝘾𝙖𝙣𝙘𝙚𝙧. Cynthia is a new connection from the #ASCO22 conference attendance this summer.
A former journalist, Harvard-trained management consultant, and hospital executive, Cynthia is the author of 𝙏𝙝𝙚 𝘽𝙞𝙜 𝙊𝙧𝙙𝙚𝙖𝙡: 𝙐𝙣𝙙𝙚𝙧𝙨𝙩𝙖𝙣𝙙𝙞𝙣𝙜 𝙖𝙣𝙙 𝙈𝙖𝙣𝙖𝙜𝙞𝙣𝙜 𝙩𝙝𝙚 𝙋𝙨𝙮𝙘𝙝𝙤𝙡𝙤𝙜𝙞𝙘𝙖𝙡 𝙏𝙪𝙧𝙢𝙤𝙞𝙡 𝙤𝙛 𝘾𝙖𝙣𝙘𝙚𝙧.
Since recovering from her own ordeal, she has helped raise awareness of the shared emotional experience of cancer, the physical drivers of that experience, and how to cope with it all.
When not speaking or writing about cancer emotions, she volunteers as a peer mentor to newly diagnosed patients, is an avid tennis player and adventure traveler, and lives in New York City with her adoring husband and shih tzu puppy.
Come ready to dive into and understand The Emotional Turmoil of Cancer. We'll be learning about the typical emotional experience that can help you appreciate that you are not alone and help you better anticipate— and manage—the days ahead. Most importantly, hear what experts have to say and how others who have been through it have coped with the emotional fallout of the disease.
The graphic of the rollercoaster is linked here: https://thebigordeal.com/chart/
ANNOUNCEMENTS:
Lookin’ For a Cure Arizona 5K Walk for Ocular Melanoma
COMING UP September 24, 8 AM
Register here and be sure to bring friends and family to walk with us! (Virtual option coming soon)
Eye Believe Survivorship Seminar in Nashville, Tennessee
October 14-15. REGISTER HERE! (Welcome reception for in person attendees on October 13, 6:00 PM)
(Virtual and in person options.)
Lookin’ For a Cure TEXAS 5K Walk for Ocular Melanoma
NOVEMBER 5, 2022; 8 AM
Register here and be sure to bring friends and family to walk with us! (Virtual option available)
Lookin’ For a Cure LA 5K Walk for Ocular Melanoma in memory of Laurie Walters
NOVEMBER 12, 2022
REGISTER here and feel free to bring friends and family along! (virtual options available)
Email contact@acureinsight.org for questions regarding any upcoming events!
*********
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more!
Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure.
Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Page Fronczek.
Wednesday Sep 28, 2022
Wednesday Sep 28, 2022
A Cure in Sight is joined by Anna Malloch and her mom, Wendy, to discuss being a freshman in college at the time of diagnosis.
Due to the nature of her diagnosis and other complications, she noted they experienced 39 appointments in a single year!
Anna shares her story below–tune in to hear more!
“My name is Anna Malloch, I am an OM survivor. I was diagnosed in April of 2020 right when covid lockdown hit. I was 19 years old in my freshman year at Auburn University. About a month into lockdown and the transition to online classes I noticed that my vision was starting to fade in my left eye and noticing flashers. I was able to get an appointment with my primary eye doctor the next Monday. From there I was sent to a retina specialist in Montgomery that afternoon. Who then referred me to a doctor in Atlanta and I was there within two days. This is where we were able to find that the mass was completely solid and was then told I had ocular melanoma. Luckily, we caught it early enough to be able to have the option of a radiation plaque which I did the next week. And from what we can see I have made a full recovery and the tumor and reduced to over half of its size.
Favorite Song: Maverick City Music “Fear is Not My Future” https://www.youtube.com/watch?v=ulFGXnASE4Q
ANNOUNCEMENTS:
Eye Believe Survivorship Seminar in Nashville, Tennessee
October 14-15. REGISTER HERE! (Welcome reception for in person attendees on October 13, 6:00 PM)
(Virtual and in person options.)
Lookin’ For a Cure TEXAS 5K Walk for Ocular Melanoma
NOVEMBER 5, 2022; 8 AM
Register here and be sure to bring friends and family to walk with us! (Virtual option available)
Lookin’ For a Cure LA 5K Walk for Ocular Melanoma in memory of Laurie Walters
NOVEMBER 12, 2022
REGISTER here and feel free to bring friends and family along! (virtual options available)
Email contact@acureinsight.org for questions regarding any upcoming events!
*********
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more!
Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure.
Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Page Fronczek.
Wednesday Sep 28, 2022
Wednesday Sep 28, 2022
A Cure in Sight is joined by Presley Jackson and his mom, Stephanie to discuss coming of age with a rare cancer diagnosis.
This month is #childhoodcancerawarenessmonth and there are few more brave than kids tackling a cancer diagnosis.
Please consider sharing this episode and or starting a fundraiser for ACIS on your page to help us ensure patients have the resources they need, as well as funds for future research for #ocularmelanoma
All #pediatriccancer is rare. In the #ocularmelanoma world, it’s even more rare to be born with OM or to experience a diagnosis in childhood.
Presley Jackson was diagnosed at 13 years old.
We wanted to share what he wrote in honor of #nationalbraveday and #childhoodcancerawareness
"If I had to recount a time I faced a challenge or setback I would think back to November of 2018 when I started the battle with the biggest challenge I have and probably will ever face.
This challenge would be my battle with the super rare cancer called ocular melanoma. The cancer and the treatment I received to fight this cancer would ultimately destroy the vision in my right eye rendering me practically blind. This would be my first major setback, because it impacted the biggest part of my life, baseball. I have played baseball since I was 5 years old. It is my pride and joy, and really my life. I love baseball. So when I returned to baseball in the spring of 2019 it was not the same as before.
The cancer had ruined both my depth perception and my reaction time. This made playing baseball exceptionally hard and practically banned me from pitching. Slowly but surely, with hours of practice and work I would make my way back to the mound and back to the standard of playing I was at before my diagnosis. I continue to raise my standards still to this day and continue to push my limits and defy the odds. I may not be the best pitcher, but I give it everything I have got.
Other setbacks would come in my everyday life. I have now become very light sensitive and fragile in a way. I get severe ocular migraines that affect the vision in my good eye as well. My cancer and subsequent radiation treatment took everything my body had, so normal illnesses like Covid, the flu and even the common cold are much worse on me. I also have to deal with hundreds of doctors appointments, scans and travel for treatment. This causes me to miss a lot of school and a lot of normal kid life.
Through everything this challenge has thrown at me, I continue to live my life to the fullest and have even learned some very valuable lessons from it. I learned that no one is promised tomorrow, so you have to make every single moment count. I started a project called the Polaroid Project to help me capture these memories. The second lesson I learned is that family is everything. Having the full support of my family has enabled me to fully believe that anything is possible. Which brings me to my final and most important lesson, nothing is truly impossible."
Presley Jackson Ponce September 21st, 2022
Thank you Presley for your bravery and honesty in sharing your story.
ANNOUNCEMENTS:
Eye Believe Survivorship Seminar in Nashville, Tennessee
October 14-15. REGISTER HERE! (Welcome reception for in person attendees on October 13, 6:00 PM)
(Virtual and in person options.)
Lookin’ For a Cure TEXAS 5K Walk for Ocular Melanoma
NOVEMBER 5, 2022; 8 AM
Register here and be sure to bring friends and family to walk with us! (Virtual option available)
Lookin’ For a Cure LA 5K Walk for Ocular Melanoma in memory of Laurie Walters
NOVEMBER 12, 2022
REGISTER here and feel free to bring friends and family along! (virtual options available)
Email contact@acureinsight.org for questions regarding any upcoming events!
*********
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more!
Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure.
Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Page Fronczek.
Monday Oct 10, 2022
Monday Oct 10, 2022
A Cure in Sight is joined by Katariina McCrea from Cookeville, TN to discuss being newly diagnosed with mets (cancer spread) 15 months after her initial eye diagnosis and treatment.
Due to the nature of her diagnosis, and a few nuances that are unique to her story, this was both a shock, and not a shock–but Kat shares how she has been coping, some of the thought process her medical team has approached treatment with, and how she copes on the day to day.
A few highlights from her journey so far:
- initially diagnosed with a retina detachment later found to be a massive choroidal/ciliary body tumor
- successful brachytherapy, tempered by the news of a difficult biopsy result: class 2, prame positive, with many genetic mutation markers
- starting an adjuvant clinical trial with the hope of reducing the chance of future spread, and helping further research for someone else
- receiving the news this month that 2 spots, long seen as stable, had grown and there were many micro-metastases throughout the liver
- what treatment options were given and why?
- how do you keep going forward despite all odds?
Living with mets is something most of us dread as omies, but it is a reality for far too many. If you’re also willing to share your journey of living with metastatic uveal melanoma, please email danet@acureinsight.org to be featured on the podcast or social media platforms.
ANNOUNCEMENTS:
Eye Believe Survivorship Seminar in Nashville, Tennessee
October 14-15. REGISTER HERE! (Welcome reception for in person attendees on October 13, 6:00 PM)
(Virtual and in person options.)
Lookin’ For a Cure TEXAS 5K Walk for Ocular Melanoma
NOVEMBER 5, 2022; 8 AM
Register here and be sure to bring friends and family to walk with us! (Virtual option available)
Lookin’ For a Cure LA 5K Walk for Ocular Melanoma in memory of Laurie Walters
NOVEMBER 12, 2022
REGISTER here and feel free to bring friends and family along! (virtual options available)
Email contact@acureinsight.org for questions regarding any upcoming events!
*********
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more!
Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure.
Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Page Fronczek.
Monday Nov 07, 2022
Monday Nov 07, 2022
In this session, Anne helps patients and caregivers work through the process of being “in the waiting room." An OM diagnosis is chalk full of uncertainty. Anne walks patients and caregivers alike through the processing and caring of ourselves in this state of limbo.
Anne Osborn, author, grew up in the shadows of OM when her mother died of OM. Forty years later, she, was diagnosed with OM, Class 2. She spent her career in human services and trained as a psychotherapist. Her specialties include initially being a children’s therapist specializing in needs impacting the ability to learn in education and she is currently a retired marriage and family therapist. Simultaneously she began leading an emergency team for law enforcement and fire personnel over nearly three decades, ‘when bad things happen to them, we go in’. She manages her stress with long distances, both in running and bicycling, though now, as a Master Gardener, much time is spent in Nature. Her passions outside of family and friends include travel, writing, and being of service. Her book, Coping with Ocular Melanoma: A Toolbox is published and available for purchase at the store. All proceeds from her book go directly to patient care.
Monday Nov 07, 2022
Monday Nov 07, 2022
Dr. Stone presents on childhood development, and what are developmentally appropriate responses to navigating ocular melanoma as a family. A patient panel also is consulted to discuss various approaches to talking to kids about cancer, from young children to adults.
Dr. Caitlin Stone received her bachelor’s degree in psychology and child development from Tufts University. She earned her PhD in clinical psychology from the University of North Carolina at Greensboro. Dr. Stone currently serves as a child psychologist for the children's hospital at Vanderbilt.
Monday Nov 07, 2022
Monday Nov 07, 2022
In this session, participate in a live group music therapy session and learn about the benefits of music in healing and stress management with Carrie Friddell.
Carrie Friddell, MT-BC, NMT, is a Nationally Board Certified Music Therapist and Neurologic Music Therapist. She earned her Music Therapy Board Certification in 2005 and has served both children and adult populations. Additionally, she is a licensed Music Together center director.
The end of the session uses a host of songs to encourage meditation.
Saturday Nov 12, 2022
Saturday Nov 12, 2022
A Cure in Sight is joined by Dr. Kristin Markell, M.D., an integrative women’s health provider, to discuss the importance of self-compassion in times of high stress.
Dr. Kristin Markell is a double board-certified Integrative Gynecologist practicing in Fayetteville, Arkansas. As a practicing OB/GYN for over a decade, she began experiencing burnout symptoms. While researching and exploring ways to support her health, she found integrative and functional medicine and the personalized options available to diagnose and treat the root cause of her symptoms. After noticing amazing changes taking place in her own health- mind, body and spirit, she knew she had to learn more for herself, her family and her patients. Now, after completing an Integrative Medicine Fellowship at the University of Arizona, she uses the tools of integrative, conventional, and functional medicine to guide women to rediscover their whole self, with a focus on enjoying the special, simple, sacred moments with their loved ones, prioritizing ease and deep contentment, finding their inner power, delighting in life, and healing themselves from burnout, stress, and dis-ease. To learn more about her programs and how to work with her, check out www.kristinmarkellmd.com.
You can find her and follow her content on Instagram here.
ANNOUNCEMENTS:
Lookin’ For a Cure TEXAS 5K Walk for Ocular Melanoma
NOVEMBER 5, 2022; 8 AM
Register here and be sure to bring friends and family to walk with us! (Virtual option available)
Lookin’ For a Cure LA 5K Walk for Ocular Melanoma in memory of Laurie Walters
NOVEMBER 12, 2022
REGISTER here and feel free to bring friends and family along! (virtual options available)
Email contact@acureinsight.org for questions regarding any upcoming events!
*********
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more!
Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure.
Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Page Fronczek.
Saturday Nov 12, 2022
Saturday Nov 12, 2022
A Cure in Sight is joined by Dr. Richard Carvajal for a medical webinar-style discussion on:
- how to understand the data behind a clinical trial?
- What the decision making process can look like for managing surveillance, ahead of metastatic discovery, or after and what components go into that process?
- Recommended scan protocol from uveal melanoma oncology teams and how they differ and why
Come prepared with questions and an enlightening and empowering discussion.
A little about Dr. Carvajal:
"Richard D. Carvajal, MD is an Associate Professor of Medicine at Columbia University Irving Medical Center where he serves as both Director of Experimental Therapeutics and Director of the Melanoma Service within the Division of Hematology/Oncology. He serves as Co-Leader of the Precision Oncology and Systems Biology Program within the Herbert Irving Comprehensive Cancer Center. Dr. Carvajal’s research is focused on the development of novel therapies for patients with melanoma [including uveal melanoma] and other cancers, with the overall objective of controlling and curing these diseases."
ANNOUNCEMENTS:
EYE GIVE for Giving Tuesday is open for registration!
FB fundraising is currently down for all non-profits--help us out by joining the "Eye Give" movement through this link!
Steps for Sight Registration is coming! Subscribe to the newsletter to stay in the know!
Email contact@acureinsight.org for questions regarding any upcoming events!
*********
Be sure to follow us on Facebook, Twitter, Linked In, or Instagram @acureinsight, for more stories, tips, research news, and ideas to help you navigate this journey with OM!
*A Cure in Sight is a 501c3 organization. All donations made can help fund our podcast to educate patients, fund research, aid patients, and more!
Donate $10 $15 $20 today to help A Cure in Sight in their quest to find a cure.
Contribute via PAYPAL OR VENMO or reach out directly to contact@acureinsight.org
The Eye Believe Podcast is brought to you by Castle Biosciences. Castle Biosciences is a leading diagnostics company improving health through innovative tests that guide patient care. The Company aims to transform disease management by keeping people first: patients, clinicians, employees and investors.
This podcast was hosted by Danet Peterson and produced by Page Fronczek.
Saturday Nov 12, 2022
Saturday Nov 12, 2022
In this session, learn what a registry is and what it can tell us with Dr. Armin Afshar from UCSF ocular oncology and one of the investigators of the Insight Registry.
Join the Insight registry below, and be sure to keep updating your surveys.
www.insight.iamrare.org
Dr. Armin Afshar, MD is an ophthalmologist who specializes in treating eye tumors and disorders of the retina and vitreous (the gel-like substance at the back of the eye). He has special expertise in managing ocular surface tumors of the conjunctiva and cornea, as well as intraocular tumors involving the iris, ciliary body, choroid, retina, vitreous or optic nerve.