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End-of-Day Update, 6/7/2011


The 2011 Delegates’ Summit has come to an end. The delegates put their miles in and broke in their shoes trekking around Capitol Hill urging support for legislation that benefits blood cancer patients, families and researchers.


advend.gifAs we have told those in attendance, the work does not end now! There are still several ways to influence our legislators:


1) Visit LLS’s Advocacy Center to send pre-drafted, edited emails urging support of LLS’s legislative agenda.


2) Share your own story with your elected officials. Coming to DC is not the only way to show your face and share your story with your legislators. Visit the “Share Your Story” section of LLS’s Call for Cures site to upload a picture or video sharing your cancer journey and why you advocate on behalf of blood cancer patients.


3) Join in the discussion! We have launched a brand new LLS Advocacy discussion board at the LLS Community. Share your thoughts and engage with other LLS advocates on the LLS Advocacy forum.


Thank you to the delegates who made the trip to Washington, DC to meet directly with legislators; to the advocates who followed the event and lent your support online; and all of the advocates who support LLS’s advocacy agenda throughout the year. Your support is critical to our success and truly appreciated! We hope you all have enjoyed LLS’s 2011 Delegates’ Summit!


Afternoon Update, 6/7/2011


We are half way through the second day of the Delegates’ Summit. The delegates have primarily finished their Senate meetings and delegate feedback has been positive to this point, with most senators expressing support for our legislative agenda.summit3.jpg


“For my first meeting on Capitol Hill, I got to meet directly with my senator,” said Kortney Hamm, patient services manager for the Mid-America Chapter. “They were very nice, very informed on our issues and supportive of what I had to say. I also put a plug in for our Light the Night Walk and he said he would see me there, so that was a fun plus!”


Delegates met primarily with their senators in the morning and will meet with members of the House in the afternoon.


Morning Update. 6/7/2011


day2 copy.gifDay two of the Delegates’ Summit has started! The delegates all met for a quick breakfast and to exchange notes before heading out to their meetings on the Hill. LLS volunteers will be meeting with their senators in the morning and their representatives in the afternoon. It’s a hot one in DC today, but not even 92 degree heat and high humidity will keep our delegates from urging their members of Congress to support blood cancer research, education and support programs!


As a reminder, our advocates at home can join in that message! Please visit LLS’s Advocacy Center to Take Action! and send pre-drafted, editable emails urging legislator support of LLS’s issues.


As Delegates return from their meetings we will post updates from the day on this blog, Twitter and Flickr.

Please follow along!


End-of-Day Update, 6/6/2011


The first day of the Delegates’ Summit is now over! The second half of the afternoon was led by Christopher Cush from Soapbox Consulting who taught the delegates how to conduct a meeting with their legislators.



Cush impressed upon the advocates how important their personal stories are in gaining congressional support. Members of Congress are constantly meeting with paid lobbyists who bombard them with facts and figures, but it is the personal stories of patients, like the delegates and LLS’s advocates at home, that make a difference!


Said Cush, "You must convince Congress why YOUR issue is the important one and why YOUR program deserves funding and support."


The day might be over, but the Delegates’ Summit is not. The delegates will be in action tomorrow meeting with their elected officials. You can still help at home, too! There are two ways:


1) Visit LLS’s Advocacy Center to send pre-drafted, editable emails to your representatives urging them to support LLS’s legislative agenda.


2) Share your story with your legislators in picture or video form at LLS’s Call for Cures website.


Thank you to everyone who followed the day online and who took action to help blood cancer patients, families and researchers. We hope to see you back here tomorrow!


Afternoon Update. 6/6/2011:


Our volunteers are in DC and the Delegates’ Summit is in full gear! After a quick greeting by LLS staff, several guest speakers have addressed the issues the Delegates will urge Congress to support tomorrow.


adv4.gifFirst, Ellen Riddleberger, an LLS consultant from McCallister & Quinn addressed the need for continued funding for the CDC Blood Cancer Education Program. Since the program’s inception in 2002, it has provided nearly $35 million in funding to LLS and other blood cancer organizations. For its part, LLS has used this funding to provide education and awareness programs that support the underserved.


Mike Uscio, patient services manager at LLS’s Central Ohio Chapter, hit this point home. “The CDC Program has allowed LLS chapters to reach communities we normally couldn’t afford to,” said Uscio. “It’s these communities that education and awareness have the greatest impact on patient quality of life and it’s of great importance that Congress maintain this funding or reaching these patients becomes difficult; almost impossible.”


Elizabeth Goss, an LLS consultant from Turner & Goss, then address a drug shortage issue that has plagued cancer patients recently. The most recent shortage involved a drug used to treat many leukemias and lymphomas called cytarabine. Patients can help address this issue with Congress by urging their members to support the Preserving Access to Life-Saving Medications Act here.


Finally, Lou DeGennaro, Ph.D., LLS’s Chief Mission Officer, and George Dahlman, SVP, LLS’s Office of Public Policy, spoke about the Cures Acceleration Network (CAN) and LLS’s Therapy Acceleration Program (TAP). Both programs seek to speed the discovery and development of new therapies. The CAN program seeks to accomplishment this acceleration by providing grants to universities, medical centers, companies and advocacy organizations. Those advocacy organizations that have research programs to speed treatment development, like LLS, are natural partners for this program.


Learn more about these and all of LLS’s public policy priorities on LLS’s Advocacy Center.      adv2.gifMorning



Morning Update, 6/6/2011:


Lisa Kahookele, an acute myelogenous leukemia (AML) survivor from Boone, IA, first became involved with LLS’s advocacy programs through our Iowa state campaign to increase awareness of the benefits and opportunities for umbilical cord blood donation.  The issue was personal for Lisa: she received a life-saving umbilical cord blood transplant in November 2009, which has allowed her

to raise her own two boys.  Motivated and enthused by her state advocacy experience, Lisa is now proud to be advocating on behalf of LLS’s federal public policy agenda.


“I don’t know why I’ve been so lucky,” said Lisa, “but there is a reason and I want to pay it forward.”


Today and tomorrow, June 6-7, Lisa will join nearly 70 LLS Delegates to visit Washington, DC for LLS’s first “Delegates’ Summit.”  This is an important and critical time to be visiting our nation’s capital.  Congress is engaged in historic debates on federal budget issues – including the amount of funding for medical research and the continuation of the CDC’s blood cancer education program.  During their two days in Washington, it will be the Delegates responsibility to promote the importance of LLS’s policy agenda directly with their elected officials.


Unfortunately, it is not possible to invite every one of LLS’s advocates to lobby the Hill directly, but blood cancer volunteers can still participate in the day from home!


There are two ways that you can still participate in the day:


1) Advocates can influence their elected officials by visiting  LLS’s Advocacy Center to send pre-drafted, editable emails urging members of Congress to support LLS’s legislative priorities.


2) You can follow along online! LLS representatives will post updates throughout the event on  this Blog,  the LLS Facebook Fan Page and  @LLSADvocacy on Twitter through #LLSsummit; volunteers can join in on the discussion at the  new LLS Advocacy Community; and advocates can “see” the event through pictures on Flickr and video posted on YouTube.


Just because you could not make the trip to Washington, DC does not mean you cannot still participate in the days’ activities.  Please check in from time-to-time and be a part of the Delegates’ Summit!



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