Through a Patient’s Eyes #ASH19 #MMSM

Cynthia Chmielewski |
Cindy Chmielewski on ASH background

In a few weeks I will be traveling to the Sunshine State to attend the 61st Annual Meeting of the American Society of Hematology (ASH#19) with the International Myeloma Foundation (IMF).  I am fortunate that the IMF understands the importance of patient education and the value of including the patient perspective at scientific meetings.  This is the eighth time I will be attending ASH.  I never get tired of attending this premier meeting. With over 25,000 attendees ASH is the world’s most comprehensive hematology event. Thanks to the generosity of our industry sponsors the IMF is able to bring a group of patient leaders to #ASH19. This team of patient advocates will be providing real time coverage of the meeting from the patient perspective.  We will be writing blogs, conducting video interviews and live tweeting from the oral sessions using the hashtags #ASH19 #MMSM #IMFASH19.

Cindy takes a break during a previous ASH conference to pose for a photo!

The patients that are attending this year’s ASH meeting have the necessary knowledge and followings to comprehend what is being presented during the sessions and in turn to share what they learned with the myeloma community. The International Myeloma Foundation has trained us well.  We have attended Patient and Family Seminars and Support Group Leader Summits, listened to webinars and teleconferences, watched Ask Dr. Durie videos and read the weekly Myeloma Minute.  Some of the team members serve as patient advocates for the NCI, SWOG, ECOG/ACRIN, and Alliance and others have peer-reviewed grant proposals. The entire team is prepared to actively engage at the #ASH19 meeting.

During #ASH19 I will have the opportunity to attend the oral sessions and listen to myeloma researchers present their data and results from clinical trials they have conducted.  I am glad Dr. Durie will give us guidance as to what sessions may be the most valuable to attend since there are over 700 myeloma sessions listed in the mobile meeting app! Thanks to Twitter I will be able to learn what is happening in the sessions I can’t attend by following the conference hashtags.

Relationship-building is another valuable outcome of this meeting. Our team will have the opportunity to meet with our industry partners.  These meeting benefit both the myeloma community and the pharmaceutical industry.  It is essential that we work hand in hand in order to achieve the best outcomes. We will share our patient stories during these face to face meetings and voice what we feel are the unmet needs of the myeloma community.  Additionally, we will have the opportunity to network with the leaders in the field of myeloma research.  By building these relationships over the years patient advocates are now being viewed as value partners and are being offered seats at the table.

[From Left:] IMF CFO & COO Jennifer Scarne, IMF President & CEO Susie Durie, Dr. Robert A. Kyle, Cindy Chmielewski, and Dr. Enrico Milan (a 2019 Brian D. Novis Junior Grant recipient)

Each year we are asked to pick a focus.  This year I have two.  I will continue to follow the new research being presented in the area of immunotherapy.  I plan to attend the sessions that will present updated data on CAR-T cells, antibody drug conjugates (ADC), and Bi-specific antibodies.  This year a new focus will be attending presentations that are focusing on the immune micro-environment and its role in myeloma treatment.

I am honored to be attending #ASH19.  My goal is to share what I have learned via Twitter @MyelomaTeacher so that you feel you are virtually attending this awesome event.

By Cindy Chmielewski @MyelomaTeacher

Philadelphia Multiple Myeloma Networking Group

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  4. Christina Yoder says:

    So proud of you Cynthia. Being a myeloma patient is like having an invisible disability that no one sees. I was told I would not get a remission, (But since 2016) somehow I have already beat my expiration date. With 2 stem cell transplants under Dr. Ravi Vij at Barnes Jewish Hospital, Saint Louis, Missouri in 2013. Now I see Dr Ivan Borrello at Johns Hopkins in Baltimore, Maryland. I just hope if and when the cancer starts to fight back, I will be ready. I prefer living like I don’t have the disease, it helps.

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