I almost didn't watch this video because I've been dealing with Myeloma for 5-1/2 years now and figured I was well past the "Myeloma 101" stage, but I'm glad I did! I enjoyed the live dialog between the two speakers and Dr. Mikhael's presentation was light but informative, refreshing many of the things I've learned over the years as well as a few new things that I didn't know. The sound quality was good enough that I could understand it without captions. However, I was about 80% of the way through the presentation before I realized the speakers were speaking to slides that presumably were visible to the attending audience, but not to viewers on UA-cam! I later jumped on the computer to see if there was any indication of where I could find the slides. The presentation was so good I wanted the slides for future reference! All I could find was a link to a page on the IMF website that showed a "Friday Slide Deck" and a "Saturday Slide Deck", a number of UA-cams videos including the one I had just come *from*, and a bunch of bios at the bottom. I initially skipped right over the slide decks because nothing about the way they were named said anything to me about the title of the video I had just watched! After failing to find what I was looking for I returned to the two slide decks in the hope the slides I was looking for were in there somewhere, but it was daunting because there were 342 slides between the two decks and they weren't text-searchable because they were just images. I manually browsed through these decks trying to sleuth out if and where the slides I was interested in might be! I figured a few things out and eventually found them and was able to download the entire deck containing the slides of interest. I was pleased to find out that it downloaded as an editable Power Point file, so I was able to trim it to the slides specifically for this video. All this took an hour. If only I had known this up front; I could have just downloaded the entirety of the two decks and do a proper search to find what I was looking for. It would have saved a lot of time! After all this, I gotta ask: Is there any chance of that presentation being produced with the same good sound track, but actually showing the slides that are being spoken to? Failing that, would it be possible to add some instructions adjacent to the "Download slides" link accompanying the video to help the viewer find them? To be clear, I didn't even understand that the video was of a single presentation within a weekend conference at first. Something as elementary as putting the name of the event on a label adjacent to the link would prepare the user of the link to recognize those words again when arriving at the link's destination. One more line explaining which deck and which slide numbers to look for would be immensely helpful! Is this too much to ask for? Another idea that might even help to increase views: Compile a full "Table of Contents" for the event showing the titles of all the presentations for the event grouped into the two days, with columns indicating the numbers of the slides for each title within the day's deck, and a link to the video of that title as well if one has been produced. Paste this under the "Download slides" link of each of the videos, and when people go looking for the link to the slides, they will see the titles to the other presentations and might view additional ones with titles of interest!
Hello Brad, Thank you for taking the time to provide such thoughtful and comprehensive feedback. Our goal is to make myeloma educational information as easy as possible to navigate. We will definitely keep your suggestions in mind as we plan our 2025 programming. In response to your feedback, we have segmented the slides to match the video segments, which are available here: www.myeloma.org/videos/imf-patient-family-seminar-2024-los-angeles-ca. We have also included the video transcript beneath each segment. Hopefully, this makes the content more accessible. As always, our IMF InfoLine is here for you if you have any questions. You can reach the IMF InfoLine at 1-800-452-CURE (2873) or by email at infoline@myeloma.org.
@@IMFMyeloma Very nice: a big button under each video that brings you directly to the slides pertaining to that video! Perhaps the button caption should be changed to "View Slides" rather than "Download Slides" however since it looks like downloading has been disabled at this point... 😁
Thank you for this presentation 👏 sadly as a myeloma sufferer, I find it difficult to watch presentations of this nature… fortunately after going through chemotherapy and stem cell treatment, I’ve been in complete remission for 6 1/2 years…
This information would have been helpful in 2013 when my wife was diagnosed with 95% bad plasma cells. My wife had a stem cell transplant using her stem cells at Barnes Jewish Hospital Siteman Cancer Center. She fought five and a half years before she died at age 48. She worked in medical billing and was 1/8 Cherokee, Caucasian
Sorry for the loss of your beloved wife. I lost my mother suddenly, and it was not until after she passed that I, too, discovered health information that would have helped her thru her struggles, so I understand your pain.
I almost didn't watch this video because I've been dealing with Myeloma for 5-1/2 years now and figured I was well past the "Myeloma 101" stage, but I'm glad I did! I enjoyed the live dialog between the two speakers and Dr. Mikhael's presentation was light but informative, refreshing many of the things I've learned over the years as well as a few new things that I didn't know. The sound quality was good enough that I could understand it without captions. However, I was about 80% of the way through the presentation before I realized the speakers were speaking to slides that presumably were visible to the attending audience, but not to viewers on UA-cam!
I later jumped on the computer to see if there was any indication of where I could find the slides. The presentation was so good I wanted the slides for future reference! All I could find was a link to a page on the IMF website that showed a "Friday Slide Deck" and a "Saturday Slide Deck", a number of UA-cams videos including the one I had just come *from*, and a bunch of bios at the bottom. I initially skipped right over the slide decks because nothing about the way they were named said anything to me about the title of the video I had just watched!
After failing to find what I was looking for I returned to the two slide decks in the hope the slides I was looking for were in there somewhere, but it was daunting because there were 342 slides between the two decks and they weren't text-searchable because they were just images. I manually browsed through these decks trying to sleuth out if and where the slides I was interested in might be! I figured a few things out and eventually found them and was able to download the entire deck containing the slides of interest. I was pleased to find out that it downloaded as an editable Power Point file, so I was able to trim it to the slides specifically for this video. All this took an hour. If only I had known this up front; I could have just downloaded the entirety of the two decks and do a proper search to find what I was looking for. It would have saved a lot of time!
After all this, I gotta ask: Is there any chance of that presentation being produced with the same good sound track, but actually showing the slides that are being spoken to?
Failing that, would it be possible to add some instructions adjacent to the "Download slides" link accompanying the video to help the viewer find them? To be clear, I didn't even understand that the video was of a single presentation within a weekend conference at first. Something as elementary as putting the name of the event on a label adjacent to the link would prepare the user of the link to recognize those words again when arriving at the link's destination. One more line explaining which deck and which slide numbers to look for would be immensely helpful! Is this too much to ask for?
Another idea that might even help to increase views: Compile a full "Table of Contents" for the event showing the titles of all the presentations for the event grouped into the two days, with columns indicating the numbers of the slides for each title within the day's deck, and a link to the video of that title as well if one has been produced. Paste this under the "Download slides" link of each of the videos, and when people go looking for the link to the slides, they will see the titles to the other presentations and might view additional ones with titles of interest!
Hello Brad,
Thank you for taking the time to provide such thoughtful and comprehensive feedback. Our goal is to make myeloma educational information as easy as possible to navigate. We will definitely keep your suggestions in mind as we plan our 2025 programming.
In response to your feedback, we have segmented the slides to match the video segments, which are available here: www.myeloma.org/videos/imf-patient-family-seminar-2024-los-angeles-ca. We have also included the video transcript beneath each segment. Hopefully, this makes the content more accessible.
As always, our IMF InfoLine is here for you if you have any questions. You can reach the IMF InfoLine at 1-800-452-CURE (2873) or by email at infoline@myeloma.org.
@@IMFMyeloma
Very nice: a big button under each video that brings you directly to the slides pertaining to that video! Perhaps the button caption should be changed to "View Slides" rather than "Download Slides" however since it looks like downloading has been disabled at this point... 😁
Thank you for this presentation 👏 sadly as a myeloma sufferer, I find it difficult to watch presentations of this nature… fortunately after going through chemotherapy and stem cell treatment, I’ve been in complete remission for 6 1/2 years…
This information would have been helpful in 2013 when my wife was diagnosed with 95% bad plasma cells. My wife had a stem cell transplant using her stem cells at Barnes Jewish Hospital Siteman Cancer Center. She fought five and a half years before she died at age 48. She worked in medical billing and was 1/8 Cherokee, Caucasian
Sorry for the loss of your beloved wife. I lost my mother suddenly, and it was not until after she passed that I, too, discovered health information that would have helped her thru her struggles, so I understand your pain.