Tuesday, May 6, 2014

Susan Allen: Reflecting on Day 1 of the LLS Symposium in Washington DC

May 5, 2014

Hello LLS North Texas,

I set out for Washington DC on Monday May 5th, full of anticipation. On what is my 22 year anniversary of being diagnosed with Hodgkin's Lymphoma Stage 2B it is such an honor and privilege to be attending the "Leading Way to a World Without Blood Cancers.'  It is a three day event that will bring together researchers and scientist who are forging ahead to find a cure, volunteers leaders and passionate advocates all under one roof. We will focus on where we are today and where we are headed in the future to have the most impact on the LLS Mission, "A World Without Blood Cancer."

Monday afternoon we listened to a ten person Research Panel that included two transplant specialist, several research scientists, sweet Emily Whiltehead who is featured in our Fighting Fire with Fire video (who turned 11 on May 2nd), the parents of a child who lost the battle but they remain passionate about LLS, a pediatric and Adult Hematologist/Oncologist. Although all of the panelist are highly educated and shared their vast knowledge with us they also spoke from the heart about their passion to find a cure.

A theme that I heard from the panel is that they understand that treatment for blood cancer is rigorous and a challenge to the body due to the toxicity of the drugs and treatments. In researching and developing new options for patients their work is spent on being "specific targeting" of cancer cells through Genomic testing and paradigm shifting technologies.  That will help doctors focus their work down to the cell and gene where the cancer originated. Dr. Bradner stated, "It is a very special time in biomedical research and it should receive our full attention." At that time that Dr. Lou Degennaro, the acting LLS CEO and Chief Mission Officer, asked the panel, "How can LLS help, where should we focus our efforts to make the most impact?" The panelist were clear in the fact that their goal was a CURE and that means two things: 1. Cancer free/no medication,  and 2. Long term medication induced remission, citing CML and the fact that is is a chronic manageable disease using Gleevac. The main theme - when it comes to funding we CANNOT take our foot off the gas peddle, we must double down and go for it. It is Time to Complete our Mission and "Someday is today."

Our day concluded with two moving survivor stories that had everyone in the audience on their feet knowing that we are moving ahead and WE WILL get there. As far as my survivor story, wow, what a ride!  Going from 22 years ago with four little boys, the youngest 17 days old, a new diagnosis and a treatment protocol to an amazing "Survivorship Journey" and now  working for LLS. Amazing if I must say so myself.

More tomorrow on "Leading the Way to a World without Blood Cancer."


Susan Allen is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She is a 22-year Hodgkin's lymphoma survivor, registered nurse and a Certified Nurse Navigator.

Contact Susan:
(972) 996-5905

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