The Leukemia & Lymphoma Society
6811 Shawnee Mission Parkway
Suite 202
Shawnee Mission KS 66202
Web and Phone Contact
Telephone (913) 262-1515
Mission Statement
Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families.
Leadership
CEO/Executive Director Mrs. Carli Good
Board Chair Mr. Jeff Carlstedt
Board Chair Company Affiliation CBIZ
History and Background
Year of Incorporation 1974
Former Names
The Leukemia Society of America
Financial Summary
Revenue Expense Area Graph

Comparing revenue to expenses shows how the organizations finances fluctuate over time.

Source: IRS Form 990

 Breakdown
Net Gain/Loss:    in 
Note: When component data are not available, the graph displays the total Revenue and/or Expense values.
Statements
Mission Statement Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families.
Background Statement Since its founding in 1949, the Society has invested more than $1 billion in research which has led to key advances in producing new and better treatments to enhance and prolong lives. Innovations in cancer treatment over the years have included radiation and chemotherapy, stem cell transplantation and new targeted therapies that kill cancer cells without harming those cells that aren't cancerous.
Impact Statement
In the past year, the MidAmerica Chapter of LLS has distributed more than $1.4 million to patients in Kansas and Missouri from its Co-Pay Assistance Program. This money is distributed to assist with out-of-pocket medical expenses associated with treatment.
 
This year LLS has awarded $1.95 Million in research grants to researchers in Missouri currently working to find cures for cancer.
 
We maintain a program called "First Connection." This is a program that partners a newly diagnosed patient with a patient who has successfully undergone treatment to offer support and advice.
Needs Statement
LLS offers a Co-Pay Assistance Program for patients who need help paying out-of-pocket medical expenses. Assistance ranges from a $1000 to $10,000 based on diagnosis. LLS needs approximately $1.4 million each year to fund this program in Kansas and Missouri.
 
The LLS Mid-America Chapter offers a Travel Assistance program to help patients families cover treatment-related travel.  In 2016, LLS gave $62,000 to patients in the Mid-America Chapter.
 
Patti Robinson Kaufmann First Connection Program links newly diagnosed patients to a peer volunteer who has experienced a similar diagnosis.  A trained survivor volunteer currently in remission phones to new patient to share information and support. LLS always needs volunteer survivors.
 
The LLS advocates public policy positions that accelerate progress toward cures for leukemia, Hodgkin and non-Hodgkin lymphoma and myeloma, and to improve the quality of life of those with blood cancer, along with their friends and families.
Service Categories
Fund Raising & Fund Distribution
Cancer
Pediatrics Research
Areas of Service
MO
KS
MO - Jackson County
MO - Clay County
MO - Platte County
KS - Wyandotte County
KS - Johnson County
MO - Eastern Jackson Co
MO - Jackson County Urban Core
KS - Wyandotte County Urban Core
KS - Lawrence
KS
CEO/Executive Director/Board Chair Statement
As the current President of The Leukemia & Lymphoma Society, Mid-America Chapter Board of Trustees, and after serving on its Board in the past, I have personally observed the successes and challenges of the organization. I have been extremely impressed with the Chapter's advocacy and help for those afflicted with leukemia and lymphoma; its focus on fundraising, and its fiscal responsibility which maximizes the dollars that serve the mission.  I believe in and contribute to the Society's efforts, as I daily witness the Society's impact on patients and their families.  I see the devastation that these diseases can cause daily in my practice at the University of Kansas Bone Marrow Transplant program.  Funds raised for the Society also support both national and local research initiatives.  Several important grants have been awarded to Kansas City area scientists including those at KU.  This research will help find new cures for these deadly maladies.  Money for patient assistance is provided in many forms including direct financial support for those who qualify from a medical and financial perspective, and assistance and advice completing health insurance claims.  As with many non-profit organizations, fundraising is our greatest challenge, especially in a trying economy.  This work is done be dedicated employees and trustees and by countless volunteers.  Fundraising activities include a variety of special events and direct solicitation.  The organization is also trying to pursue charitable grants.  Although the LLS petitions lawmakers for financial assistance, government and agency grants are consistently being reduced at both the federal and state level which impacts the amount of resources and financial aid the LLS can provide locally.  The society is dedicated to providing access to health care resources and financial assistance to citizens of the Kansas City metropolitan area and I am proud to serve and be a part of its mission. 
Programs
Description The Leukemia & Lymphoma Society has a longstanding history of helping patients in need of financial assistance to help cover a portion of their treatment costs.  Currently LLS meets this need through the Co-Pay Assistance Program and the Travel Assistance Program. These programs are available for patients meeting financial guidelines to help pay out-of-pocket medical expenses or treatment-related travel costs. Over the past year LLS distributed more than $1.4 million in financial assistance to local patients in Kansas and Missouri.
Category Diseases, Disorders & Medical Disciplines, General/Other Leukemia
Population Served People/Families of People with Cancer, ,
Short-Term Success A patient's immediate request for financial aid is met and that they are able to focus more on their treatment and not financial concerns.
Long-Term Success By taking some of the financial burden off of families during a patient's course of treatment, we hope to eliminate some of the devastating consequences of a cancer diagnosis and help families rebuild their lives quicker after a patient goes into remission.
Program Success Monitored By This program is successful because not only do patients access it year after year but we also have a high number of social workers and doctors who refer patients to our program. Each year we hear from countless families on how this program benefited them in a time of great financial burden.
Examples of Program Success

Copay Assistance Program & Travel Assistance Program - Each year LLS distributes millions of dollars in financial assistance to care for patients tangible needs.  This program has established trust between healthcare providers, LLS and patients.  It is vital to the success of our organization.  

First Connection - Specially trained patients and their families have the opportunity to share their experiences with someone newly diagnosed with the same blood cancer. Each year the Mid-America Chapter makes more than 100 First Connection Matches, serving at least 200 individuals.  Advocacy - LLS was honored to advocate and lobby for a bill that was passed in the state of Missouri during the 2014 session. The Oral Parity Bill was passed with unanimous support from both sides of the aisle.  This Bill gives all cancer patients in Missouri the knowledge that their insurance companies cannot charge them different prices for oral chemotherapy vs IV chemotherapy.  A true victory for all Missourians.  Currently, LLS is partnering with like-minded organizations in the state of Kansas on a program called "Cap the Copay" which will help regulate the amount that can be charged for specialty tier drugs. 
Description The Patti Robinson Kaufmann First Connection program links newly diagnosed patients to a peer volunteer who has experienced a similar diagnosis. A trained patient volunteer currently in remission phones the new patient to share information and support. First Connection peer support is also available for caregivers/family members supporting someone through cancer, as well as for matching parents who have a child with cancer.
Category Diseases, Disorders & Medical Disciplines, General/Other Leukemia
Population Served People/Families of People with Cancer, ,
Short-Term Success This program provides an opportunity to share experiences with someone who has been successfully treated for the same diagnosis. Patients and caregivers learn coping skills and gain hope from trained volunteer survivors, who share their special perspective on the recovery process.
Long-Term Success The hope is that a patient would receive a successful First Connection and upon completion of their treatment would become a trained First Connection ambassador and be able to assist newly diagnosed patients.
Program Success Monitored By Once a request for a match has been submitted and a volunteer is located, the Patient Services Manager contacts the volunteer to find out if he/she is available to make the connection. The volunteer then contacts the requester. When the connection has been completed, the Patient Services Manager follows up with the patient and trained volunteer to ensure that the match was successful and to assess if the patient has additional needs.
Examples of Program Success
Since July 2010, the First Connection program volunteers have been able to reach over 175 newly diagnosed patients and their families to offer comfort and support through their cancer journey.
Description
LLS brought a delegation of 15 AML survivors, seven caregivers and other LLS leaders to Washington D.C. in April 2016 to share personal experiences with the FDA and discuss plans for a research study to learn what patients and caregivers are looking for in new treatments. LLS also collaborated with The Johns Hopkins School of Public Health in 2016 to develop an innovative research study, "Quantifying Patient and Caregiver Preferences for Treatment of AML," designed to understand patient experiences and expectations for AML treatment. In 2017, LLS has seen firsthand how research funding fuels the discovery and approval of lifesaving cancer cures and oppose any budget that would decimate these efforts. The current Administration's budget proposal includes cutting funding for the National Institutes of Health by nearly $6 Billion.  LLS is also working with the House of Representatives on the American Health Care Act to ensure patients have access to cancer care.
Category Health Care, General/Other Health Care Issues
Population Served People/Families of People with Cancer, ,
Short-Term Success Our Home Office monitors the number of letters sent by constituents to their representative each session. Our advocacy database receives email alerts when congress is voting on legislation pertaining cancer research and funding.
Long-Term Success Increasing National Institutes of Health and National Cancer Institute funding to ensure medical research progress. This is done by advocating for a research program that balances basic, translational and clinical research, as well as predictability in funding for NIH. Expanding the Department of Defense cancer research program to include all hematological malignancies. The Department of Defense currently has, as part of its extensive cancer program, research into chronic myelogenous leukemia (CML). Continued funding of the Hematological Cancer Research and Education Investment Act, which authorizes research and education programs regarding blood cancers. Passage of the Act marks the first time that the federal government has acknowledged the magnitude and impact of blood cancers. Working on passage of cancer survivorship legislation to address the growing and unique concerns of survivors. Expanding the number of states who offer routine health care coverage.
Program Success Monitored By Each year our Chapter is required to add over 100 new members to our advocacy database. This not only increases the number of members but also the number of letters sent each year to representatives. We also monitor the legislation we have asked members to support to see if it has passed.
Examples of Program Success LLS brought a delegation of 15 AML survivors, seven caregivers and other LLS leaders to Washington D.C. in April 2016 to share personal experiences with the FDA and discuss plans for a research study to learn what patients and caregivers are looking for in new treatments. LLS also collaborated with The Johns Hopkins School of Public Health in 2016 to develop an innovative research study, "Quantifying Patient and Caregiver Preferences for Treatment of AML," designed to understand patient experiences and expectations for AML treatment. In 2017, LLS has seen firsthand how research funding fuels the discovery and approval of lifesaving cancer cures and oppose any budget that would decimate these efforts. The current Administration's budget proposal includes cutting funding for the National Institutes of Health by nearly $6 Billion. LLS is also working with the House of Representatives on the American Health Care Act to ensure patients have access to cancer care.
CEO Comments In addition to the programs already discussed, the Leukemia & Lymphoma Society offers programs that are open to the public at no charge. We offer a free Information Resource Line to patients (800-955-4572), professionals and the public. We also have free information through the website and free brochures available in numerous languages.
Executive Director/CEO
Executive Director Mrs. Carli Good
Term Start Sept 2017
Co-CEO/Executive Director
Term Start 0
Compensation Last Year
Former CEOs
NameTerm
Mrs. Janna LaCock Feb 1990 - Sept 2017
Senior Staff
Title Office Manager/Campaign Coordinator
Experience/Biography Amy Michale has been with The Leukemia & Lymphoma Society for 17 years serving in the rolf of Office Manager and most recently working with Donor Development. Prior to working at The Leukemia & Lymphoma Society Amy was with the American Heart Association working in their program Department.
Title Deputy Executive Director
Experience/Biography Megan Clemens graduated from Iowa State in 2005 with a Bachelor's of Science Degree. She was hired on as a Campaign Manager for The Leukemia & Lymphoma Society after graduation and for the past three years she has managed many of the Society's events, including Man & Woman of the Year, Breakfast with the Champions and Light the Night. She also served as Development Director before being promoted to Deputy Executive Director.
Title Operations Director
Staff
Paid Full-Time Staff 11
Paid Part-Time Staff 2
Volunteers 800
Paid Contractors 0
Retention Rate 100%
Formal Evaluations
CEO Formal Evaluation Yes
CEO/Executive Formal Evaluation Frequency Annually
Senior Management Formal Evaluation Yes
Senior Management Formal Evaluation Frequency Annually
Non-Management Formal Evaluation Yes
Non-Management Formal Evaluation Frequency Annually
Plans & Policies
Organization Has a Fundraising Plan Yes
Organization Has a Strategic Plan Under Development
Management Succession Plan Yes
Organization Policy and Procedures Yes
Nondiscrimination Policy No
Whistleblower Policy Yes
Document Destruction Policy Yes
Collaborations
Kansas University Cancer Center, Community Health Charities, United Way, Turning Point, Cancer Action, Landon Center on Aging, Kendallwood Hospice,  Novartis, Genentech, Biogen Idec, Millennium, Celgene, Kansas City Cancer Centers, Kansas University Medical Center, St. Luke's Cancer Institute, North Kansas City Hospice, Block Cancer Foundation and Cancer Treatment Centers of America.
Awards
Award/RecognitionOrganizationYear
#1 in Market for MarginAnnual Leadership Conference (Natl Leukemia and Lymphoma Society)2006
3rd Place Campaign Revenue Western Large MarketsAnnual Leadership Conference (National)2006
Named a "High Performing Chapter"Annual Leadership Conference2006
2nd Highest percent net revenue for Pennies for Patient in 2007Annual Leadership Conference2007
Highest Net Revenue for Man & Woman of the Year - Cluster 2The Leukemia & Lymphoma Society2009
Coach of the Year - Team In Training Coach Helen WilmsWin KC2008
Quality of LIfe AwardThe Leukemia & Lymphoma Society2011
2013 Cultivation Award for outstanding achievement in cultivating Man & Woman of the Year candidates to raise $100,000 or moreAnnual Leadership Conference2013
Man & Woman of the Year Superior Achievement Award for Campaign raising $50,000 over Net BudgetAnnual Leadership Conference2013
Man & Woman of the Year 20/20 Vision AwardAnnual Leadership Conference2017
Government Licenses
Is your organization licensed by the government? Yes
CEO Comments The Society reflects a commitment to diversity and inclusiveness as a valued means to build and leverage our unique talents, strengths and assets to advance our mission. The Society recognizes, respects, and responds to the diverse needs and contributions of the communities we serve.
Board Chair
Board Chair Mr. Jeff Carlstedt
Company Affiliation CBIZ
Term July 2017 to June 2019
Email jcarlstedt@cbiz.com
Board Members
NameAffiliation
MR. RYAN ANDERSON MARINER WEALTH
Dr. Keith August
Ms. Becca Bell-McMahon
Ms. Mary Blair Cerner
Abbey Brockman RN
Mr. Jeff Carlstedt CBIZ
Mr. Stephen Clifford Ernst & Young
Ms. Stacey Deere Shook Hardy Bacon
Mr. Mark Dudenhoeffer Austin Hardware
Mr. Jose Evans Assured Quality Title Company
Mr. Jimmy Frantze JJ's
Mr. David Frantze Stinson Morrison Hecker
Mr. David Ginther Waddell & Reed
Dr. Erin Guest Children's Mercy Hospital
Mr. Brady Hays Black & Veatch
Mr. Lynn Hoover Stinson Morrison Hecker
Mrs. Caitlin Kaczmarzyck Global Prairie
Dr. Suman Kambhampati HCA
Mr. John McGurk
Ms. Lisa O'Dell Pioneer Services
Dave Peirano
Ms. Anna Raccuglia Commerce Trust Company
Mr. Joseph Ronnebaum
Mr. Derek Schlesinger Kansas City Chiefs
Mr. Brian Schmidt Black & Veatch
Dr. Frank Slovick Sarah Cannon Cancer Center
Mr. Rusty Smith Bank of America
Mr. Brad Smith BMO Harris Bank
Mr. Darren Taylor Blue Cross Blue Shield
Dr. Jaz Tolbert Children's Mercy Hospital
Mr. Richard Woody Woody Financial Company
Dr. Abdulraheem Yacoub Kansas University Cancer Center
Board Demographics - Ethnicity
African American/Black 1
Asian American/Pacific Islander 0
Caucasian 29
Hispanic/Latino 0
Native American/American Indian 0
Other 2
Board Demographics - Gender
Male 23
Female 9
Unspecified 0
Governance
Board Term Lengths 2
Board Term Limits 3
Board Meeting Attendance % 51%
Written Board Selection Criteria? Yes
Written Conflict of Interest Policy? Yes
Percentage Making Monetary Contributions 100%
Percentage Making In-Kind Contributions 70%
Constituency Includes Client Representation No
Number of Full Board Meetings Annually 4
Standing Committees
Advisory Board / Advisory Council
Board Development / Board Orientation
Communications / Promotion / Publicity / Public Relations
Education
Finance
Nominating
Special Events (Golf Tournament, Walk / Run, Silent Auction, Dinner / Gala)
Strategic Planning / Strategic Direction
Development / Fund Development / Fund Raising / Grant Writing / Major Gifts
CEO Comments The Society reflects a commitment to diversity and inclusiveness as a valued means to build and leverage our unique talents, strengths and assets to advance our mission. The Society recognizes, respects, and responds to the diverse needs and contributions of the communities we serve.
Financials
Fiscal Year Start July 01, 2017
Fiscal Year End June 30, 2018
Projected Revenue $3,980,806
Projected Expenses $1,451,714
Audit Documents
Foundation Comments
  • FYE 6/30/2016, 2015, 2014: Financial data reported using the IRS Form 990's for the local chapter.  
  • Foundation/corporate revenue line items include contributions from individuals.
  • The Mid-America Chapter of the Leukemia and Lymphoma Society is the local affiliate of the national Leukemia and Lymphoma Society.  
Detailed Financials
 
Expense Allocation
Fiscal Year201620152014
Program Expense$871,550$3,145,684$3,336,328
Administration Expense$162,682$160,302$285,135
Fundraising Expense$219,318$213,306$321,302
Payments to Affiliates$0$0$0
Total Revenue/Total Expenses2.691.050.99
Program Expense/Total Expenses70%89%85%
Fundraising Expense/Contributed Revenue7%6%8%
Assets and Liabilities
Fiscal Year201620152014
Total Assets$121,233$127,607$20,395
Current Assets$104,610$127,607$20,395
Long-Term Liabilities$0$0$0
Current Liabilities$193,069$188,649$243,111
Total Net Assets($71,836)($61,042)($222,716)
Short-Term Solvency
Fiscal Year201620152014
Current Ratio: Current Assets/Current Liabilities0.540.680.08
Long-Term Solvency
Fiscal Year201620152014
Long-Term Liabilities/Total Assets0%0%0%
Top Funding Sources
Fiscal Year201620152014
Top Funding Source & Dollar Amount --Sarver Charitable Trust $69,772 --
Second Highest Funding Source & Dollar Amount --Schutte Foundation $60,000 --
Third Highest Funding Source & Dollar Amount --Individual Donor $40,000 --
Capital Campaign
Currently in a Capital Campaign? No
Capital Campaign Anticipated in Next 5 Years No
Organization Comments The Leukemia & Lymphoma Society is fiscally responsible, good stewards and careful to have safeguards in place to prevent abuse and fraud of donors' money.
Organization Name The Leukemia & Lymphoma Society
Address 6811 Shawnee Mission Parkway
Suite 202
Shawnee Mission, KS 66202
Primary Phone (913) 262-1515
Contact Email amy.michale@lls.org
CEO/Executive Director Mrs. Carli Good
Board Chair Mr. Jeff Carlstedt
Board Chair Company Affiliation CBIZ
Year of Incorporation 1974
Former Names
The Leukemia Society of America