The Leukemia & Lymphoma Society
6811 Shawnee Mission Parkway
Suite 202
Shawnee Mission KS 66202
Web and Phone Contact
Telephone (913) 262-1515
Fax 913- 262-2167
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 Ms. Stacey Deere
Board Chair Company Affiliation Shook Hardy & Bacon
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 Mid-America Chapter during fiscal year 2019, The Leukemia & Lymphoma Society:
 
In an effort to provide education and services to local patients and families, the Mid-America chapter connected with 399 NEW households and completed 16 Patti Robinson Kaufmann First Connection matches.  Over 170 patients, caregivers, and healthcare professionals attended a local education program in their community.
 
Distributed more than $878,787 in co-pay assistance to 392 patients, $24,800 in Patient Aid to 248 patients, $20,000 in Urgent Need to 40 patients, and $50,500 in Travel Assistance to 101 patients to help ease the financial burden of cancer treatment.   
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 local Travel Assistance program to help patients families cover treatment-related travel. 
 
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 $1.1 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 Our office of public policy advocates for policies at the state and federal level that accelerate new treatments and ensure patients have access to care, so that they can live longer, healthier lives.  Our efforts have helped to increase federal cancer research funds, speed the review and approval process for new therapies, and protect patient access to lifesaving treatments, thanks to the engagement of our nationwide grassroots network.  
Population Served People/Families of People with Cancer
Examples of Program Success
LLS works with Congress, the National Institutes of Health and the Food & Drug Administration to promote new medical discoveries and speed the development of new treatments and cures by advocating for sustained research finding from the NIH and other federal agencies, encouraging the FDS to accelerate approval processes while still protecting safety and supporting patient-focused drug development that captures patients' needs and concerns.
 
We ensure patients can access the care they need, we advance state and federal laws and regulations that will guarantee patients are not denied access to health insurance coverage, ensure coverage includes care that is essential to cancer treatment, promote affordability in premiums and out-of-pocket costs and encourage stability in insurance options so patients do not experience interruptions in their 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
Former CEOs
NameTerm
Mrs. Janna LaCockFeb 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.
Staff
Paid Full-Time Staff 11
Paid Part-Time Staff 1
Paid Contractors 3
Volunteers 800
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
University of Kansas Cancer Center, Community Health Charities, United Way, Turning Point, Gilda's Club, Cancer Action,  Novartis, Genentech, Biogen Idec, Millennium, Celgene, HCA hospitals,  St. Luke's Cancer Institute,  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 Ms. Stacey Deere
Company Affiliation Shook Hardy & Bacon
Term July 2019 to June 2020
Email sdeere@shb.com
Board Co-Chair
Board Co-Chair Mr. Dave Van Brunt
Company Affiliation Bayer Animal Health
Term July 2019 to June 2020
Email davevb57@gmail.com
Board Members
NameAffiliation
Ms. Mary BlairCerner
Mr. Phil ButtellMenorah Medical Center
Mr. Jeff CarlstedtCBIZ
Ms. Janet ConnerCerner
Mr. Chuck CudaOpes Commercial Real Estate
Ms. Stacey DeereShook Hardy Bacon
Mr. Jimmy FrantzeJJ's
Mr. David FrantzeStinson Morrison Hecker
Mr. David GintherWaddell & Reed
Dr. Erin GuestChildren's Mercy Hospital
Mr. Bob HeckertSpirit Marketing
Mr. Lynn HooverStinson Morrison Hecker
Mrs. Caitlin KaczmarzyckGlobal Prairie
Dr. Suman KambhampatiHCA
Mr. Brian LiesmanErnst & Young
Ms. Lisa O'DellPioneer Services
Mr. Dave PeiranoFike Co.
Mr. Joseph Ronnebaum
Mr. Brian SchmidtBlack & Veatch
Dr. Frank SlovickSarah Cannon Cancer Center
Mr. Dave Van BruntBayer Animal Health
Mr. Richard WoodyWoody Financial Company
Dr. Abdulraheem YacoubKansas University Cancer Center
Board Demographics - Ethnicity
Asian American/Pacific Islander 0
Caucasian 21
Native American/American Indian 0
Board Demographics - Gender
Male 17
Female 6
Unspecified 0
Governance
Board Term Lengths 2
Board Term Limits 3
Board Meeting Attendance % 47%
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, 2019
Fiscal Year End June 30, 2020
Projected Revenue $4,248,585
Projected Expenses $1,489,788
Audit Documents
Foundation Comments
  • FYE 6/30/2018, 2017, 2016: 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 Year201820172016
Program Expense$939,830$1,039,849$871,550
Administration Expense$174,644$169,097$162,682
Fundraising Expense$263,104$228,833$219,318
Payments to Affiliates----$0
Total Revenue/Total Expenses2.782.542.69
Program Expense/Total Expenses68%72%70%
Fundraising Expense/Contributed Revenue------
Assets and Liabilities
Fiscal Year201820172016
Total Assets$24,735$34,306$121,233
Current Assets$3,216$16,384$104,610
Long-Term Liabilities$0$0$0
Current Liabilities$222,290$332,085$193,069
Total Net Assets($197,555)($297,779)($71,836)
Short-Term Solvency
Fiscal Year201820172016
Current Ratio: Current Assets/Current Liabilities0.010.050.54
Long-Term Solvency
Fiscal Year201820172016
Long-Term Liabilities/Total Assets0%0%0%
Top Funding Sources
Fiscal Year201820172016
Top Funding Source & Dollar Amount --Sarver Charitable Trust $62,311 --
Second Highest Funding Source & Dollar Amount --Victor E. and Caroline E. Schutte Foundation $50,000 --
Third Highest Funding Source & Dollar Amount --Edward G. & Kathryn E. Mader Foundation $30,000 --
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.
Other Documents
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 Ms. Stacey Deere
Board Chair Company Affiliation Shook Hardy & Bacon
Year of Incorporation 1974
Former Names
The Leukemia Society of America