@MyelomaTeacher … #PatientsIncluded at #ASH18

Cynthia Chmielewski |

I am looking forward to shedding my puffy winter jacket and traveling to sunny San Diego to attend the 60th Annual Meeting of the American Society of Hematology (#ASH18) with the International Myeloma Foundation (IMF). This will be the seventh time I have attended ASH, but going to this meeting never gets old. I anxiously await each year’s meeting like a child awaiting Christmas. ASH is the world’s most comprehensive hematology event with over 25,000 attendees. The International Myeloma Foundation is able to bring a team of support group leaders and patient advocates to #ASH18 thanks to the generosity of our industry partners. The team will be providing first hand coverage of this meeting from the patient perspective. We will be live tweeting from sessions using the hashtags #ASH18, #IMFASH18 and #MMSM (multiple myeloma social media). Additionally the “social media” team members will be writing blogs and will be conducting video interviews.

 

Some may ask do patients understand the content being presented at healthcare conferences? Should they be there? I know the patients that are attending this year’s ASH meeting have the necessary skills to comprehend what is being presented and in turn share what they learn with their communities. The International Myeloma Foundation has trained us well. We have attended Patient and Family Seminars, listened to webinars and teleconferences, viewed Ask Dr. Durie videos, read the weekly Myeloma Minute and participated in the annual Support Group Leaders Summit. Additionally, many of the team members have attended ASH in the past. Some of our team members serve on Institutional Review Boards, Myeloma Steering Committees, have peer reviewed grant proposals and serve as the patient advocate on various clinical trial networks. Not only will we be attending #ASH18 we will be actively participating in this scientific meeting as well.

Besides traveling to a much warmer climate-(hopefully there will be no snow at this year’s ASH) -there are other reasons I would be crazy enough to be away from home for 6 days to attend a scientific meeting during the busy holiday season. Being a retired 5th grade math and science teacher I know that knowledge empowers us. Empowered, engaged patients tend to have better medical outcomes. What better place to learn about the latest myeloma research than at a premier international meeting? Not only will I get to listen to researchers present their data and results, I will also have the opportunity to ask questions. At this year’s ASH I discovered over 700 abstracts highlighting oral and poster presentations when searching myeloma on the downloadable mobile app!  I surely won’t be able to attend them all, but our team will divide and conquer using Dr. Durie’s guidance as to which sessions may be the most meaningful to us. I will also be following the live tweeting from #ASH18 to learn what is happening at the sessions I can’t attend.

Relationship building is another important outcome of #ASH18. Networking with leaders in the field of myeloma research plays an important role at this conference. Value comes from relationship building. When patient advocates are truly seen as valued partners working together on various research initiatives will be the natural next step. I am thinking about creating a new hashtag #BetterTogether. (I also hope to get a selfie with some of my favorite myeloma specialists!) Our team will also have the opportunity to hold meetings with our industry partners. In an era of patient-centricity, it is essential that our pharma partners understand our unique patient journeys and what we define as our unmet needs.

 

My focus this year will be on immunotherapy.  I plan to attend sessions on CAR-T Cell Therapy, monoclonal antibodies (mAbs), Antibody Drug Conjugates (ADCs) and Bi-specific T-cell Engagers (BITEs). All these therapies appear to be very promising new treatment options. To find out the latest updates being presented at #ASH18 on these potential new therapies look for my tweets from the oral sessions and poster presentations.

I feel very fortunate that I am attending this’s year’s ASH gathering.  I am sure I will learn and share a lot of new insights. The good news is you too can attend #ASH18 virtually from the comfort of your own recliner.  Some the satellite sessions with be live-streamed such as New Strategies for Multiple Myeloma Care and IMWG Conference Series. You will be able to watch them as they are occurring or at a later date. Follow our live Tweets from the meeting sessions. You can subscribe to the #IMFASH18 tweeters list to see everyone’s tweet in one feed or just follow the #ASH18, #IMFASH18 and #MMSM hashtags. And don’t forget to read our blogs and listen to our video recordings. Become an empowered, engaged patient and a partner in your care!

 

Cindy Chmielewski AKA MyelomaTeacher

Philadelphia Multiple Myeloma Networking Group

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