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:
Susan.Allen@lls.org
(972) 996-5905
Contact Susan:
Susan.Allen@lls.org
(972) 996-5905
