Thank you for a truly incredible experience. I was honored to be one of the leaders chosen to have the opportunity to attend the ASH conference in Atlanta I felt like a kid going to Disney World for the first time, but this was Myeloma World and the Myeloma specialists from across the world were the "characters" I came to see and hear.
I learned so much and left Atlanta with a feeling of HOPE. The Friday IMF Satellite Symposium set the stage for the rest of the meeting. I learned new acronyms in that alphabet soup of myeloma-MDR, MTD, DLT, aSE, CCd, PCP and the list goes on. My learning continued through all the poster sessions and special IMF events like the IMWG' s breakfast, the Research Grants Awards Reception and Monday night's debate. The highlight of the conference for me was the Journalist Workshop.
Besides the education ASH has provided it also gave me the opportunity to network with other leaders, nurses, doctors, and representatives from various organizations that provide patient advocacy, education and support. I know that some of the connections I made at ASH will develop into life-long friendships and support networks.
Now it's my turn to figure out how to make sure all I learned is shared. I want to reach as many people as possible. I will start by sharing my ASH experience at one of Philadelphia Multiple Myeloma Networking Group's monthly meetings. The ASH experience will also allow me to be a more effective First Connection and Fourth Angel Mentor. I will continue to Tweet as @MyelomaTeacher too! One of my followers already asked if she could call me so we can talk.
A few weeks after I was diagnosed with myeloma in 2008 I drove myself to The Patient and Family Seminar in Short Hills, NJ. I was depressed and scared because I didn't know what to expect, but that was the best car ride I ever made. I was greeted by a group of smiling, helpful people who gave me tons of brochures and a canvas bag with the IMF logo on it to put them in. I still have that bag.
When I entered the meeting my eyes were swollen and red because I had been crying the whole way up the NJ Turnpike, but soon I realized I found a very special group. The people in the audience were engaged and asking questions and the specialists on the panel took the time to patiently answer each one. I had no idea what anyone was talking about, but what I did know that this group offered hope and knowledge. I felt at home, after all I was a teacher and agreed 100% with the IMF's motto that Knowledge is Power. I remember one of the panelist saying that an educated patient has the best chance for long-term survival. It was at that very moment I decided to find out everything I could about what myeloma is and how it can be treated.
The IMF has provided me with much of my Myeloma education with its brochures, Patient and Family seminars, teleconferences, webcasts, SGLS and now ASH. I am eternally grateful for your mission to educate patients so that they can be active participants in their healthcare. I feel empowered and I am no longer scared or depressed thanks to your dedication to us- the patients. You are the best!
Thanks once again for an experience I will never forget. I only hope that I can continue to spread the HOPE.
PS I know that elusive black swan will soon be swimming into your pond!PPS- Please share this with everyone who has a role in educating us patients.