Melanoma Research Foundation | ljohnston | Activity https://forum.melanoma.org/user/ljohnston/activity/ Activity feed for ljohnston. Wed, 22 Apr 2026 21:48:01 -0400 https://buddypress.org/?v= en-US 30 hourly 2 b3231f35660df7c0ddeff53b1ce43f6b ljohnston replied to the topic Survey in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/survey/#post-275089 Wed, 23 Jun 2021 20:00:46 -0400 To advance the development of new diagnostic tools the MRF collaborates with multiple partners who are committed to ensuring the patient perspective is included in their mission against melanoma. As an organization,  we share this  commitment to making sure the patient voice is elevated during the development of  prevention, diagnostic and tr…Read more

]]> f6bf5f656b204df0e4e728d74cb4f461 ljohnston started the topic Survey in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/survey/ Wed, 23 Jun 2021 14:03:25 -0400 The MRF has a survey which is focused no the impact of diagnostics testing on the patient experience. This survey is in no way promoting a diagnostic tool- it is simply wanting to know if there is an impact of diagnostic testing in regards to choosing treatments and also on the patient’s social emotional well-being.

To participate please click…Read more

]]> c749117b60e929c9fe4fe21620bc4de9 ljohnston started the topic Webinar Covid-19 Vaccinations for youth 12-15 in the forum Pediatric & AYA Melanoma Community https://forum.melanoma.org/forums/topic/webinar-covid-19-vaccinations-for-youth-12-15/ Mon, 24 May 2021 17:12:52 -0400 Given the recent expanded EUA for COVID-19 vaccination of 12-15 year-olds, a webinar series aimed at addressing parents’ key questions and concerns related to adolescents and the vaccine will be held  Thursday, May 27th at 12:30pm.  A panel of pediatric and family medicine experts will discuss how the clinical trials were done with adoles…Read more

]]> 9383833b45778367b674c12a326e1574 ljohnston started the topic COVID-19 Vaccine Webinar- Adolescents Vaccine in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/covid-19-vaccine-webinar-adolescents-vaccine/ Mon, 24 May 2021 17:11:10 -0400 Given the recent expanded EUA for COVID-19 vaccination of 12-15 year-olds, a webinar series aimed at addressing parents’ key questions and concerns related to adolescents and the vaccine will be held  Thursday, May 27th at 12:30pm.  A panel of pediatric and family medicine experts will discuss how the clinical trials were done with ado…Read more

]]> 4228268ab543cbf63d7ecad7543ec7ed ljohnston started the topic CURE OM's VISION Registry in the forum Ocular Melanoma Community https://forum.melanoma.org/forums/topic/cure-oms-vision-registry/ Thu, 13 May 2021 15:56:23 -0400 CURE OM has launched the first of its kind patient reported ocular melanoma registry.

This historic patient driven opportunity allows for patients to help researchers increase knowledge, develop more effective treatments and, one day, a cure for OM! Join us at  http://www.visionregistry.org

For questions, please email visionregistry@melanoma.org

]]> 48c00bb524c9bb2ab38c0393c3fcaeb8 ljohnston replied to the topic Ask the Expert today on MRF's FB Page! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ask-the-expert-today-on-mrfs-fb-page/#post-274628 Wed, 28 Apr 2021 17:51:17 -0400 Celeste and group-

My apologies for the mis-information on the FDA approval.  Before posting this today I made sure our team triple checked everything and communicated with our science teams.

I know this group looks for the correct information and I extend my apologies for any misdirection, especially since we strive to push out the most up to…Read more

]]> 1f00dc6d61e25deb64b6bfb502042bc3 ljohnston replied to the topic Ask the Expert today on MRF's FB Page! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ask-the-expert-today-on-mrfs-fb-page/#post-274615 Tue, 27 Apr 2021 14:12:22 -0400 All-

Thank you for the threads on this post regarding the ask the expert series related to gene expression testing.

The MRF’s education program fields many questions about the testing and treatment pipeline which is why we engage with leaders in the field to offer more information that may be helpful to melanoma patients and caregivers e…Read more

]]> 9798644dcbe5355c193ca69c0de9b53f ljohnston replied to the topic Castle Bioscience funding support of new "Ask and Expert" video series? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/castle-bioscience-funding-support-of-new-ask-and-expert-video-series/#post-274614 Tue, 27 Apr 2021 14:10:28 -0400 All-

First, thank you to all for your comments and concerns regarding the gene expression testing series.

The MRF’s education program fields many questions about the testing and treatment pipeline which is why we engage with leaders in the field to offer more information that may be helpful to melanoma patients and caregivers evaluating their o…Read more

]]> a3b19efa626d68782ed360b14ab66042 ljohnston replied to the topic Scalp Melanoma in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/scalp-melanoma-3/#post-274576 Thu, 22 Apr 2021 20:20:11 -0400 Will-

I’m really impressed by your barber and so glad he was able to notice it and say something.  There are so many people who owe their diagnosis to their hairstylists/barbers, and knowing that he is on top of this knowledge is huge!

Please keep us updated on how the surgery goes and your progress afterwards. you wont find a better support…Read more

]]> 94f22a9c131988c549967ff7513f0832 ljohnston replied to the topic Ask the Expert today on MRF's FB Page! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ask-the-expert-today-on-mrfs-fb-page/#post-274566 Tue, 20 Apr 2021 14:25:54 -0400 Cindy- I’m so glad that you continued with the appointments and that it was caught!  The test is not 100% accurate, as most tests aren’t unfortunately, I’m sure that the company tries to improve it on a regular basis.  There are many OM patients that were diagnosed class 1 (lowest risk) and then like yourself metastasized.  Based on the in…Read more

]]> 65e54ed575e6a9da1a86e974313f64c2 ljohnston replied to the topic Ask the Expert today on MRF's FB Page! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ask-the-expert-today-on-mrfs-fb-page/#post-274565 Tue, 20 Apr 2021 14:22:46 -0400 Hi Ed-

I’m not an expert on the test, but its definitely a question that we can pass to their team or you can ask during the Ask the Expert session.  Happy to assist either way!

 

]]> b57453a5c9e13b9c524b5a97d2551117 ljohnston started the topic Melanoma Symposium May 1st! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/melanoma-symposium-may-1st/ Tue, 20 Apr 2021 14:21:13 -0400 Ohio State University is hosting a free virtual symposium focused on melanoma.  Learn the latest in treatments, trials, and other important information.

To register, visit: https://melanoma.org/event/ohio-state-patient-symposium/

This is one of many free events that will be hosted throughout 2021 for the melanoma community!

For more i…Read more

]]> 8bd5d6489a46bb99a92e970f8b006755 ljohnston replied to the topic Ask the Expert today on MRF's FB Page! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ask-the-expert-today-on-mrfs-fb-page/#post-274552 Mon, 19 Apr 2021 15:33:13 -0400 HI Ed!

This test has been approved by the FDA for both cutaneous and ocular melanoma to detect gene expressions.

https://castlebiosciences.com/products/decisiondx-melanoma/

]]> eeb80817de1b03d73b55ec60a86f4c88 ljohnston started the topic Ask the Expert and GRYT Meet Up! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ask-the-expert-and-gryt-meet-up/ Mon, 19 Apr 2021 15:31:06 -0400 Tuesday, April 20th, the MRF is hosting it’s third Ask the Expert Series: Use of GEP In Melanoma Prognosis.

This will be at 3pm ET with Dr. Shannon Trotter on the MRF’s Face Book Page:  https://www.facebook.com/Melanoma.Research.Foundation

 

Tomorrow evening GRYT health is hosting a meet up for patients.  This is free to attend and re…Read more

]]> b24a52f6e92ad80bec326252b14816f1 ljohnston started the topic Ask the Expert today on MRF's FB Page! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ask-the-expert-today-on-mrfs-fb-page-2/ Tue, 13 Apr 2021 15:56:25 -0400 Tune in TODAY for our second Ask the Expert, presented by Castle Biosciences, Inc., at 4pm ET to learn about Familial Genetics v. Tumor Genetics with Dr. Brent Moody, Dermatology/Mohs, from Heritage Medical Associates and featuring Liz Holland, Senior Medical Science Liaison with Castle.

https://www.facebook.com/Melanoma.Research.Foundation

If…Read more

]]> 6117af2353d23d66b76d1eb05abd464b ljohnston started the topic Ask the Expert today on MRF's FB Page! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ask-the-expert-today-on-mrfs-fb-page/ Tue, 13 Apr 2021 15:56:05 -0400 Tune in TODAY for our second Ask the Expert, presented by Castle Biosciences, Inc., at 4pm ET to learn about Familial Genetics v. Tumor Genetics with Dr. Brent Moody, Dermatology/Mohs, from Heritage Medical Associates and featuring Liz Holland, Senior Medical Science Liaison with Castle.

https://www.facebook.com/Melanoma.Research.Foundation

If…Read more

]]> a3879643352e624d7836d45ffd722bd9 ljohnston started the topic MRF's Ocular Melanoma Mini Summit April 29th in the forum Ocular Melanoma Community https://forum.melanoma.org/forums/topic/mrfs-ocular-melanoma-mini-summit-april-29th/ Fri, 09 Apr 2021 16:01:10 -0400 On April 29th, join us for a 2hr event and hear the latest from leading experts on clinical trials and the patient journey.

Speakers include Dr. Takami Sato from TJU, Dr. Jason Luke from Univ. Pittsburbgh, Dr. Sapna Patel from MD Anderson Houston and more!

Click the link below to register and learn more about the agenda and how to join this FREE…Read more

]]> 25e75ee75372c984d446825f145e97fa ljohnston started the topic Iovance Biotherapeutics and TIL Survey in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/iovance-biotherapeutics-and-til-survey/ Fri, 09 Apr 2021 15:55:46 -0400 LAST CHANCE to help our partners at Iovance Biotherapeutics to learn more about your understanding and perspective of TIL Therapy. In support, the MRF is conducting a survey that is open to patients, thrivers and survivors who were diagnosed with stage III to stage IV unresectable melanoma. Follow the link to learn more: https://buff.ly/3fg8eSU

]]> 705d0234c3805cd55b4fdcef635d670a ljohnston started the topic Ask the Expert Series on FB! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ask-the-expert-series-on-fb/ Tue, 06 Apr 2021 17:54:56 -0400 The MRF has partnered with Castle Biosciences for a 4-part series on cutaneous melanoma.
Tune in TODAY, Tuesday, April 6, 2021 at 3pm ET for our first April Ask the Expert session, presented by Castle Biosciences, with Dr. Abel Jarell, dermatologist/dermatopathlogist from Northeast Dermatology Associates, and Robert Clark, a melanoma survivor, as…Read more

]]> 70d5c87d76168d873de6663088968205 ljohnston started the topic Melanoma and Impact of COVID-19 in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/melanoma-and-impact-of-covid-19/ Wed, 03 Feb 2021 17:09:07 -0500 HI all!

The MRF is currently asking the melanoma community to participate in our second round of information gathering regarding COVID-19 and its impact on the community.

The information is all confidential, and we will use it better understand the need and resources for the community in regards to the pandemic.

Please take a few minutes if you…Read more

]]> c7db795d2df62b8cf0ab88ac8f223ad0 ljohnston changed their profile picture https://forum.melanoma.org/activity/p/1268/ Thu, 21 Jan 2021 20:09:46 -0500 0 26347ff8fbe177545421cd933664f914 ljohnston replied to the topic Trying to add to my previous post and looking for advice? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/trying-to-add-to-my-previous-post-and-looking-for-advice/#post-273974 Wed, 20 Jan 2021 19:48:46 -0500 Hi all- just wanted to let you know that the reply issues will hopefully be fixed by end of today. Sorry for all the trouble!!- Lauren

]]> 35d7de87d97ce10a0294ec9b65061823 ljohnston replied to the topic Trying to add to my previous post and looking for advice? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/trying-to-add-to-my-previous-post-and-looking-for-advice/#post-273961 Wed, 20 Jan 2021 16:38:35 -0500 Thanks for all your work on assisting with the replies Celeste!

]]> 35d22c0760b6af92cfcb2a4b87282aae ljohnston started the topic MRF Contact and Information in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/mrf-contact-and-information/ Wed, 20 Jan 2021 16:26:20 -0500 To all patients/caregivers/loved ones-

My name is Lauren Johnston, Senior Patient Engagement Officer for the MRF.  I wanted to make sure you all had my contact information.

My role at the MRF is to assist patients on their journeys however that might look:  navigating systems, answering questions about treatments, being there to listen to the f…Read more

]]> 90bfeb6584858fd5ae6de72dc6358006 ljohnston started the topic Welcome to the New Patient Forum in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/welcome-to-the-new-patient-forum/ Fri, 18 Dec 2020 17:42:16 -0500 Dear Patient Forum Members- 

 

As we head into the busy holiday season and New Year, the Melanoma Research Foundation (MRF) is excited to launch this new community resource for patients and caregivers to come together and connect. The new forum was a culmination of patient feedback, updates associated with our new website, and wanting to pr…Read more

]]> f9e45ade0ce0e2db68c3560e4702155d ljohnston started the topic New Patient Forum for the MRF in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/new-patient-forum-for-the-mrf/ Mon, 14 Dec 2020 22:18:21 -0500 Dear forum community,

The MRF Patient Forum is the largest and oldest melanoma community online. It began as the Melanoma Patients Information Page (MPIP) in 1994 when a community member named Jeff Patterson was searching for information that could help a family member facing melanoma. He soon realized that, at the time, there was no central…Read more

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