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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
Monday Sep 11, 2023
Monday Sep 11, 2023
Join A Cure in Sight and Jennifer Stephens, an oncology research nurse with a personal connection to ocular melanoma and a pilot research project investigating patients with OM who have (since original diagnosis) developed another form of cancer on top of ocular melanoma.
She is specifically looking for patients willing to be part of this research study. More info in this episode and to be found at her site below: https://www.uwyo.edu/nursing/faculty-staff/stephens.html
RESEARCH CALL OUT: deadline fast approaching end of SEPTEMBER.
Did you develop a second cancer AFTER being diagnosed with #ocularmelanoma?
"PURPOSE OF THIS STUDY: The way someone thinks about themselves and their body can change almost immediately after getting a cancer diagnosis. This study is
gathering information about the experience of having had an ocular melanoma (OM) cancer, going into remission/cure, and then developing a second non-OM cancer.
Part 1 of this study is a recorded virtual interview using ZOOM lasting
approximately 20 to 60 minutes. An optional Part 2 of this study is a virtual participant Focus Group moderated by the principal investigator."
Participants must be 18+ years of age in USA or CA. Contact Jennifer Stephens
MA, PhD, RN, OCN, CCNE of the University of Wyoming at jsteph35@uwyo.edu
ANNOUNCEMENTS:
5K SITES ARE OPEN FOR REGISTRATION NEAR YOU! Start your team and bring your community to get involved!
September 23, Denver, CO
https://runsignup.com/Race/CO/Denver/LookinForACureDenver
November 18, Los Angeles CA
https://runsignup.com/Race/CA/SantaMonica/LookinForACureLosAngeles
November 19, Phoenix, AZ
https://runsignup.com/Race/AZ/Scottsdale/LookinforaCure5k
December 9, Dallas FTW TX
https://runsignup.com/Race/TX/FortWorth/LookinForACureFortWorth
December 10, Houston, TX
https://runsignup.com/Race/TX/Houston/LookinForACureHouston
January 20, 2024 Orlando FL
https://runsignup.com/Race/FL/Orlando/LookinForACureTampa
January 21, 2024, Miami FL
https://runsignup.com/Race/FL/Miami/LookinForACureMiami
Head to our site to register for a 5K Lookin’ for a Cure near you for the remainder of the year!!
www.lookinforacure.org
Subscribe to the newsletter to stay in the know
Newsletter link
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
Tuesday Sep 26, 2023
Tuesday Sep 26, 2023
After seeing her article featured last week, we had to get this omie on the podcast! Tune in to hear from Ellie sharing her story:
"I have to believe that going through all of this at a young age has happened for a reason. I’m not someone who blindly believes God has a plan for everything, but in my case, I can’t help but recognize that He’s taught me a lesson. Spending your whole life worrying about what has happened, what will happen, what might happen, is a waste of time. I am proof that worrying does not work! I worried my whole life that I would get cancer. And guess what? It didn’t stop me from getting it."
Summary of her diagnosis:
Diagnosed with choroidal (retina) melanoma in November, 2022.
Had surgery in Boston, MA to implant a tantalum ring in my eye, at the end of November.
Treated with proton beam radiation in Boston, MA in December.
Follow-ups show shrinkage in the tumor. Slowly losing some peripheral eyesight. No sign of metastasis as of fall 2023.
ANNOUNCEMENTS:
5K SITES ARE OPEN FOR REGISTRATION NEAR YOU! Start your team and bring your community to get involved!
November 11, Los Angeles CA
https://runsignup.com/Race/CA/SantaMonica/LookinForACureLosAngeles
November 19, Phoenix, AZ
https://runsignup.com/Race/AZ/Scottsdale/LookinforaCure5k
December 9, Dallas FTW TX
https://runsignup.com/Race/TX/FortWorth/LookinForACureFortWorth
December 10, Houston, TX
https://runsignup.com/Race/TX/Houston/LookinForACureHouston
January 20, 2024 Orlando FL
https://runsignup.com/Race/FL/Orlando/LookinForACureTampa
January 21, 2024, Miami FL
https://runsignup.com/Race/FL/Miami/LookinForACureMiami
Head to our site to register for a 5K Lookin’ for a Cure near you for the remainder of the year!!
www.lookinforacure.org
Subscribe to the newsletter to stay in the know
Newsletter link
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
Sunday Oct 01, 2023
Sunday Oct 01, 2023
Join A Cure in Sight for our 3rd Quarter Webinar, a special presentation with Dr. Harbour and Dr. Correa. Tune in to hear about the history of ocular melanoma over time, where the future of research is headed, and the incidence and presentation of uveal melanoma around the world.
J. William Harbour, M.D., is an American ophthalmologist, ocular oncologist and cancer researcher. He is currently Chair of the Department of Ophthalmology at the University of Texas Southwestern Medical Center in Dallas.
As an ocular oncologist and clinical researcher, Dr. Zelia Correa was recruited to Sylvester Comprehensive Cancer Center and Bascom Palmer Eye Institute of the University of Miami Miller School of Medicine in 2020 as Director of the Ocular Oncology Service and Professor of Ophthalmology at the University of Miami Miller School of Medicine.
Slides accessible at the following links:
Youtube recording
ANNOUNCEMENTS:
5K SITES ARE OPEN FOR REGISTRATION NEAR YOU! Start your team and bring your community to get involved!
November 18, Los Angeles CA
https://runsignup.com/Race/CA/SantaMonica/LookinForACureLosAngeles
November 19, Scottsdale, AZ
https://runsignup.com/Race/AZ/Scottsdale/LookinforaCure5k
December 9, Dallas FTW TX
https://runsignup.com/Race/TX/FortWorth/LookinForACureFortWorth
December 10, Houston, TX
https://runsignup.com/Race/TX/Houston/LookinForACureHouston
January 20, 2024 Orlando FL
https://runsignup.com/Race/FL/Orlando/LookinForACureTampa
January 21, 2024, Miami FL
https://runsignup.com/Race/FL/Miami/LookinForACureMiami
Head to our site to register for a 5K Lookin’ for a Cure near you for the remainder of the year!!
www.lookinforacure.org
Subscribe to the newsletter to stay in the know
Newsletter link
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
Sunday Oct 01, 2023
Sunday Oct 01, 2023
Join A Cure in Sight as we interview Patricia Daly, an OM survivor and nutritional therapist. She shares her personal journey with ocular melanoma, including a recurrence of her tumor in her eye and local orbital spread, and how she began a journey to healing her body’s metabolic system, one small step at a time.
“Patricia was diagnosed with a 15.2-mm large choroidal melanoma in 2008. Following plaque radiotherapy under Professor Bertil Damato in Liverpool, she responded well to the treatment but not even two years later suffered a recurrence. The original tumour now measured 18.3mm and there was also local spread with an extraocular tumour of 6.2mm, called "extraocular extension" (stage T4e). Patricia was treated with proton beam therapy in Clatterbridge. Another two years on, in 2012, there was renewed tumour activity and excessive angiogenesis- and this was the moment she opted out of further treatment and embarked on a metabolic health journey, which is an ongoing process for her.
Patricia Daly is an experienced and internationally recognized nutritional therapist (MSc, dipNT, mBANT, rCNHC) specializing in the personalized application of ketogenic metabolic therapies for recovery from chronic health challenges. She credits the ketogenic lifestyle for successfully quieting an aggressive eye tumour she was diagnosed with fifteen years ago. In 2021, she completed her MSc degree in "Advanced Nutrition in Research and Practice" at Middlesex University in London.
Patricia is co-author of The Ketogenic Kitchen, a best-selling cookbook that includes meal plans for therapeutic carbohydrate restriction. Born in Switzerland and living in Ireland, Patricia is a proud founding and advisory member of the European Keto Live Center based in Switzerland. She regularly speaks at international conferences and has established herself as one of the leading practitioners in the field of metabolic therapies.
Nothing makes her prouder than witnessing her clients transform from bystanders to active and empowered participants on their health journey."
Find more free resources at her site here: https://patriciadaly.com/
Learn about the Recovery Fundamentals course here: https://patriciadaly.com/recoveryfundamentals/
ANNOUNCEMENTS:
5K SITES ARE OPEN FOR REGISTRATION NEAR YOU! Start your team and bring your community to get involved!
November 11, Los Angeles CA
https://runsignup.com/Race/CA/SantaMonica/LookinForACureLosAngeles
November 19, Scottsdale, AZ
https://runsignup.com/Race/AZ/Scottsdale/LookinforaCure5k
December 9, Dallas FTW TX
https://runsignup.com/Race/TX/FortWorth/LookinForACureFortWorth
December 10, Houston, TX
https://runsignup.com/Race/TX/Houston/LookinForACureHouston
January 20, 2024 Orlando FL
https://runsignup.com/Race/FL/Orlando/LookinForACureTampa
January 21, 2024, Miami FL
https://runsignup.com/Race/FL/Miami/LookinForACureMiami
Head to our site to register for a 5K Lookin’ for a Cure near you for the remainder of the year!!
www.lookinforacure.org
Subscribe to the newsletter to stay in the know
Newsletter link
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
Friday Oct 06, 2023
Friday Oct 06, 2023
Join A Cure in Sight to visit with Dr. Kristie Nguyen, an optometrist, who explains the reasons eye exams are important. Share this episode with those in your community still skeptical of if they should have both dilation and photos taken of the eye for a routine comprehensive eye exam. #nationaleyeexammonth is August, and we are grateful to Dr. Kristie helping to spread awareness for eye exams with us!
Dr. Kristie Nguyen is an optometrist from Orlando, Florida
Follow her on Instagram: @dr.kristienguyen
ANNOUNCEMENTS:
5K SITES ARE OPEN FOR REGISTRATION NEAR YOU! Start your team and bring your community to get involved!
November 11, Los Angeles CA
https://runsignup.com/Race/CA/SantaMonica/LookinForACureLosAngeles
November 19, Phoenix, AZ
https://runsignup.com/Race/AZ/Scottsdale/LookinforaCure5k
December 9, Dallas FTW TX
https://runsignup.com/Race/TX/FortWorth/LookinForACureFortWorth
December 10, Houston, TX
https://runsignup.com/Race/TX/Houston/LookinForACureHouston
January 20, 2024 Orlando FL
https://runsignup.com/Race/FL/Orlando/LookinForACureTampa
January 21, 2024, Miami FL
https://runsignup.com/Race/FL/Miami/LookinForACureMiami
Head to our site to register for a 5K Lookin’ for a Cure near you for the remainder of the year!!
www.lookinforacure.org
Subscribe to the newsletter to stay in the know
Newsletter link
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
Wednesday Oct 25, 2023
Wednesday Oct 25, 2023
Alrighty friends--the game is on! See the pic for details on our recipe book fundraiser, how to submit a recipe, and how you could win one of the drawings for prizes! We want recipes from ANYONE and everyone in the OM community world wide--keep it super simple or get fancy. Share with patients, caregivers, physicians, pharma reps--we want to create a special legacy in the #ocularmelanoma community!
𝐑𝐞𝐜𝐢𝐩𝐞𝐬 𝐜𝐨𝐥𝐥𝐞𝐜𝐭𝐞𝐝 𝐮𝐧𝐭𝐢𝐥 𝐦𝐢𝐝𝐧𝐢𝐠𝐡𝐭 𝐨𝐧 𝐍𝐨𝐯 𝟏𝐬𝐭 𝐬𝐨 𝐰𝐞 𝐜𝐚𝐧 𝐚𝐢𝐦 𝐟𝐨𝐫 𝐚 𝐜𝐨𝐨𝐤𝐛𝐨𝐨𝐤 𝐫𝐞𝐚𝐝𝐲 𝐟𝐨𝐫 𝐨𝐫𝐝𝐞𝐫𝐢𝐧𝐠 𝐚𝐬 𝐚 𝐡𝐨𝐥𝐢𝐝𝐚𝐲 𝐠𝐢𝐟𝐭!
Submit a recipe here: www.tinyurl.com/ACIScookbook
Friday Nov 03, 2023
Friday Nov 03, 2023
Welcome to this year's Eye Believe 2023 Survivorship Seminar recording series.
A discussion on Integrative Medicine and Ocular Melanoma with Blake Langley.
Dr. Blake Langley is a licensed naturopathic physician and acupuncturist studying the impact of acupuncture therapies on quality of life and clinical outcomes in patients receiving active treatment for various cancers. As a Staff Scientist at the Fred Hutchinson Cancer Center, Dr. Langley works administers acupuncture for multiple clinical trials and serves as the principal investigator for an NCCIH-funded clinical trial assessing the use of ear seeds in outpatient settings.
Dr. Langley is passionate about conducting research that supports increased patient access to integrative therapies nationwide. Learn more at https://www.fredhutch.org/en/patient-care/services/integrative-medicine.html email Dr. Langley blangley@fredhutch.org
Our seminar this year was brought to you by Castle Biosciences and co-hosted by University of Washington Eye Institute, and Fred Hutch Cancer Center, and the Ocular Melanoma Foundation.
This year's sponsors include Aura Biosciences, Immunocore, IDEAYA, Delcath Systems, Trisalus Life Sciences, North West Eye Design, and Replimune. Special thanks to our hosting doctor, Dr. Stacey, and all speakers and participants who made this possible.
ANNOUNCEMENTS:
5K SITES ARE OPEN FOR REGISTRATION NEAR YOU! Start your team and bring your community to get involved!
November 11, Los Angeles CA
https://runsignup.com/Race/CA/SantaMonica/LookinForACureLosAngeles
November 19, Scottsdale, AZ
https://runsignup.com/Race/AZ/Scottsdale/LookinForACureArizona
December 9, Dallas FTW TX
https://runsignup.com/Race/TX/FortWorth/LookinForACureFortWorth
December 10, Houston, TX
https://runsignup.com/Race/TX/Houston/LookinForACureHouston
January 20, 2024 Orlando FL
https://runsignup.com/Race/FL/Orlando/LookinForACureTampa
January 21, 2024, Miami FL
https://runsignup.com/Race/FL/Miami/LookinForACureMiami
Head to our site to register for a 5K Lookin’ for a Cure near you for the remainder of the year!!
www.lookinforacure.org
Subscribe to the newsletter to stay in the know
Newsletter link
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
Friday Nov 03, 2023
Friday Nov 03, 2023
An interactive presentation by fellow patient, Anne Osborn, who discusses the benefits of meditation on whole body health and in aiding patients in coping with ocular melanoma.
Anne Osborn, Author of the book, Coping with Ocular Melanoma: A toolbox, 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 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. contact Anne: valaja@comcast.net
ANNOUNCEMENTS:
5K SITES ARE OPEN FOR REGISTRATION NEAR YOU! Start your team and bring your community to get involved!
November 11, Los Angeles CA
https://runsignup.com/Race/CA/SantaMonica/LookinForACureLosAngeles
November 19, Scottsdale, AZ
https://runsignup.com/Race/AZ/Scottsdale/LookinForACureArizona
December 9, Dallas FTW TX
https://runsignup.com/Race/TX/FortWorth/LookinForACureFortWorth
December 10, Houston, TX
https://runsignup.com/Race/TX/Houston/LookinForACureHouston
January 20, 2024 Orlando FL
https://runsignup.com/Race/FL/Orlando/LookinForACureTampa
January 21, 2024, Miami FL
https://runsignup.com/Race/FL/Miami/LookinForACureMiami
Head to our site to register for a 5K Lookin’ for a Cure near you for the remainder of the year!!
www.lookinforacure.org
Subscribe to the newsletter to stay in the know
Newsletter link
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
Friday Nov 03, 2023
Friday Nov 03, 2023
Join Melody Burchett, founder and President of A Cure in Sight, with communications and events coordinator, Hanna Hulick to discuss the INSIGHT Registry.
This is a unique rare disease patient registry.
insight.iamrare.org
The INSIGHT Registry is an online registry for patients with Ocular Melanoma (OM). It will be hosted by the National Organization for Rare Disorders (NORD); an independent non-profit patient advocacy organization dedicated to individuals with rare diseases and the organizations who serve them and as such is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
The registry will collect information from participants, (or their authorized respondents, heretofore referred to collectively as “participants”), who are affected by Ocular Melanoma.
join the registry today: insight.iamrare.org reach out to contact@acureinsight.org for support with the registry.
ANNOUNCEMENTS:
5K SITES ARE OPEN FOR REGISTRATION NEAR YOU! Start your team and bring your community to get involved!
November 11, Los Angeles CA
https://runsignup.com/Race/CA/SantaMonica/LookinForACureLosAngeles
November 19, Scottsdale, AZ
https://runsignup.com/Race/AZ/Scottsdale/LookinForACureArizona
December 9, Dallas FTW TX
https://runsignup.com/Race/TX/FortWorth/LookinForACureFortWorth
December 10, Houston, TX
https://runsignup.com/Race/TX/Houston/LookinForACureHouston
January 20, 2024 Orlando FL
https://runsignup.com/Race/FL/Orlando/LookinForACureTampa
January 21, 2024, Miami FL
https://runsignup.com/Race/FL/Miami/LookinForACureMiami
Head to our site to register for a 5K Lookin’ for a Cure near you for the remainder of the year!!
www.lookinforacure.org
Subscribe to the newsletter to stay in the know
Newsletter link
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
Friday Nov 03, 2023
Friday Nov 03, 2023
Join event host and fellow patient Danet Peterson to chat with a few other omies on how they have coped with their diagnosis.
Patients on the panel include Carrie Younger-Howard and Linda Boran.
Reach out to danet@acureinsight.org if you have interest in being part of a panel discussion on the podcast or at a future event.
ANNOUNCEMENTS:
5K SITES ARE OPEN FOR REGISTRATION NEAR YOU! Start your team and bring your community to get involved!
November 11, Los Angeles CA
https://runsignup.com/Race/CA/SantaMonica/LookinForACureLosAngeles
November 19, Scottsdale, AZ
https://runsignup.com/Race/AZ/Scottsdale/LookinForACureArizona
December 9, Dallas FTW TX
https://runsignup.com/Race/TX/FortWorth/LookinForACureFortWorth
December 10, Houston, TX
https://runsignup.com/Race/TX/Houston/LookinForACureHouston
January 20, 2024 Orlando FL
https://runsignup.com/Race/FL/Orlando/LookinForACureTampa
January 21, 2024, Miami FL
https://runsignup.com/Race/FL/Miami/LookinForACureMiami
Head to our site to register for a 5K Lookin’ for a Cure near you for the remainder of the year!!
www.lookinforacure.org
Subscribe to the newsletter to stay in the know
Newsletter link
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