Wednesday, May 7, 2014

Susan Allen: Reflecting on Day 2 of the LLS Symposium in Washington DC

Good Morning North Texas LLS,

Wow, do I wish you could all be here to hear the information first hand but I am honored I get to bring it back to North Texas.  Day two in Washington DC started with Volunteer Leadership Training and, of course, our Texas volunteers were at the front table anxious to hear the latest strategies for recruitment and fundraising. It was like a think tank of all the best practices from our major campaigns that are currently used across the nation that volunteers could take back to their chapters. Without our major campaigns and their fundraising ability, our progress and future of LLS and finding a CURE would look much different.  Thank you to all of our North Texas volunteers and all you do to make LLS such a success in so many ways. Your dedication is admired and appreciated.

The lunch hour was spent listening to the story of a little boy Rhett Krawitt who was diagnosed with leukemia at age 2 and at age 6 stood on the stage yesterday and declared "Cancer Ends with Me." His father shared the story of their journey and the ups and downs of his battle.  The family relied on the statement "Gone with the Cancer", which was an obvious theme from the movie "Gone with the Wind."  (It's a family favorite as you can tell by the name Rhett.)  As his father wrapped up his portion of the program, Rhett's sister came to the stage and very proudly introduced her little brother to the stage.  Rhett, with true pride, stood before 600 of us in the audience and told us about his job of getting through the treatment and getting "the bad guys" out and finished his story by boldly stating, "Cancer, I give a DAMN!"  The audience jumped to its feet and gave him a standing ovation.

The day continued with House Majority Speaker Eric Cantor whose message was, "We cannot just be a country of good treatment, we have to be a country of CURES."  Wow, to see such an important person in our country's government speak so strongly in relation to the LLS mission was inspiring.  We spent the afternoon in preparation for our day tomorrow on the Hill.  We learned about telling our story.  As I sat at my table and listened to those around me tell theirs, I was just amazed.  There was a man who had CLL and he would not have been alive today unless he had been accepted into a three-person research study.  He was so grateful to be alive, to have his disease cured and to be in DC to tell his story to those who can make a difference for other cancer patients.

We are taking our crusade to Capital Hill and we are ready to storm the Hill!

Have a great day North Texas, I will be in touch soon.

You can read Susan's recap of the first day in DC here.

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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