Down Syndrome Guild of Greater Kansas City, Inc.
5960 Dearborn Street
Ste. 100
Mission KS 66202
Web and Phone Contact
Telephone (913) 689-2773
Fax 913- 384-4949
Mission Statement
The Down Syndrome Guild of Greater Kansas City is a non-profit 501(c)(3) organization whose mission is to provide support and resources for individuals with Down syndrome, their families and the professionals who serve them. The Guild seeks to provide the entire community with information and education to broaden awareness and foster positive attitudes regarding people with Down syndrome.
Leadership
CEO/Executive Director Dr. Jason Drummond
Board Chair Mr. Mike Frazier
Board Chair Company Affiliation Reece & Nichols
History and Background
Year of Incorporation 1985
Volunteer Opportunities
Do you have Volunteer Opportunities? Yes
Ways to donate, support, or volunteer The Down Syndrome Guild of Greater Kansas City has accepts donations in many forms. We accept online donations through our website, check via USPS, including DSG in planned giving, trust or will, setting up a challenge fundraising for the organization, and volunteering your time and talents.
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 The Down Syndrome Guild of Greater Kansas City is a non-profit 501(c)(3) organization whose mission is to provide support and resources for individuals with Down syndrome, their families and the professionals who serve them. The Guild seeks to provide the entire community with information and education to broaden awareness and foster positive attitudes regarding people with Down syndrome.
Background Statement
Each year, 5,000 babies are born in the United States with Down syndrome, affecting about one-quarter million families. Down syndrome affects people of all ages, races, and economic levels. It is one of the most frequently occurring chromosomal abnormalities found in humans, occurring once in approximately every 700 live births. Over 250,000 people in the United States are affected by Down syndrome. DSG welcomes over 50 new babies each year. Individuals with Down syndrome have an extra copy of the 21st chromosome in all or some of their cells. This additional genetic material alters the course of development and causes the characteristics associated with the syndrome. Down syndrome is one of the leading clinical causes of intellectual disability in the world. Individuals with Down syndrome are at higher risk for medical problems and language delays. There is a wide variation in the abilities, physical development, behavior and personalities of individuals with Down syndrome. Individuals with Down syndrome benefit from loving homes, appropriate medical care, inclusive education, and positive public attitudes. Quality educational programs, along with stimulating home environment and good medical care, enable individuals with Down syndrome to become contributing members of their families and communities.
 
In 1984, a group of parents whose children had Down syndrome formed a parent support group for families and friends impacted by Down syndrome. They held their first meeting at an area medical center and continued meeting regularly at a local church. Early activities included an infant action program, which was the resource for new parents, a picnic in the summer, meetings with speakers, and parent parties. The Down Syndrome Guild had been formed. The Guild was incorporated in 1985 and in March 1987, received its 501(c)(3) not for profit exempt status. Today, the DSG is recognized as one of the leading Down syndrome parent organizations in the country. It is only through the wonderful and generous support of the Greater Kansas City community that DSG is able to continue offering cutting edge programs which create positive outcomes for individuals with Down syndrome, their families and the professionals who serve them.
Impact Statement
The Down Syndrome Guild of Greater Kansas City has been serving families for 35 years. We serve over 55 counties in Kansas & Missouri, We provide support to over 1,600  individuals with Down syndrome, their families and the professionals that serve them. Our counseling program surpassed 70 families being served who can access up to six sessions with a licensed clinical social worker. We host seminar series for over 500 educators from 42 school districts covering four topics related to understanding Down syndrome and best supporting a student with Down syndrome in the classroom and school setting.  Our "Just Like You - Down Syndrome." film surpassed 440,000 views on YouTube, we won a national education award and the film is now translated into Spanish, Portuguese and Icelandic.  

In 2016 we launched our HIRED employment program and worked with several families to explore job placement.  
Our legislative efforts helped insure the passage and implementation of ABLE Accounts in both KS and MO. We also bolstered our relationship with area Catholic schools by providing training, consultation and best practices for educating and including students with Down syndrome.

We increased our Club 3-21 adult events to twice monthly and have added cooking classes and supper club to our calendar. Our quarterly sibling events serve 8-18 year olds who all have a brother or sister with Down syndrome. Parents indicate these sibling events are very important and helpful to their child's development and finding like minded peers who understand what it means to have a sibling with special needs.  
 
Needs Statement DSG's greatest need is funding sources to continue to expand our innovative programs and services which are being modeled across the country. Additionally, we will require more staff to facilitate best in breed programming and services. Strategic goals for the future are our Pathways Program, the Adult Continuing Education Program, expand programming and provide support and resources to areas that need our expertise.
Service Categories
Alliances & Advocacy
Special Education
Alliances & Advocacy
Areas of Service
MO - Jackson County
MO - Clay County
MO - Platte County
KS - Wyandotte County
KS - Johnson County
MO - Jackson County Urban Core
AR
IA
NE
OK
KS - Wyandotte County Urban Core
MO
KS
MO - Buchanan
MO - Caldwell
CEO/Executive Director/Board Chair Statement

The Down Syndrome Guild of Greater Kansas City (DSG) serves a widely diverse population of more than 1,500 families through our lifespan programs and services. DSG has been a leading collaborator with 45 school districts and 22 hospitals throughout the Kansas City metropolitan area and the region. These collaborations create opportunities for shared partnerships effectively allowing more resources to be dedicated to serving people with Down syndrome. As the needs continue to evolve, DSG will continue to provide innovation in the programs and services that are provided. The Board of Directors works hard to ensure strong governance practices and financial accountability as programs and services are 95% funded through philanthropy and grants.

Programs
Description DSG's 24-Hour Phone Information line is available for anyone in the community. Annual educational conferences are held to bring together experts in the field to discuss best practices in working with individuals with Down syndrome. Scholarships are available for DSG sponsored or nationally sponsored conferences. DSG also hosts seminars and workshops throughout the year as requested by DSG members with topics covering the lifespan. 

DSG partners with 45 local school districts who have named Down syndrome specialists who act as liasons between DSG, schools and families impacted by Down syndrome. We offer the specialists a resource manual, free registration to conferences, bi-annual breakfasts to exchange ideas and make us aware of school district needs and ongoing updates regarding resarch and best practices for educating students with Down syndrome. DSG also offers individualized training and private consultations and behavior observations for school districts who have Down syndrome specialists.
Program Budget $93,862.00
Category Diseases, Disorders & Medical Disciplines, General/Other Down Syndrome
Population Served Adults
Short-Term Success DSG has helped 17 other Down Syndrome Associations launch this program and they are also seeing great success in engaging their schools. Inclusive education opportunities for students with Down syndrome are increasing but we still have much work to do to make it available to an even greater number of students. DSG's measures short term success by the increase in educators attending our seminars, conferences and districts naming Down syndrome specialists.  DSG recognizes 21 Community Champions for their support and advocacy of individuals with Down syndrome on March 21st,  World Down Syndrome Awareness Day.  
Long-Term Success DSG's cutting edge Down syndrome specialist program is now being modeled by 16 other Down syndrome organizations across the United States. DSG provides consultation and support to help these groups launch the program. Our success is defined by the ongoing partnerships we have with our local schools who seek DSG out regularly for consultation, training, behavioral observations and peer presentations. We have seen increased inclusive education opportunities along with increased educator and parent satisfaction. As a side benefit, our educator volunteerism and fundraising has increased as they are realizing direct benefits from their association with the DSG.  DSG's educational conferences are attended by parents and educators from Kansas, Missouri, Arkansas, Iowa, Oklahoma and Nebraska.  Local and national experts on Down syndrome are brought together to inform, educate and inspire attendees. 
Program Success Monitored By The Guild hosts periodic focus groups to obtain feedback on our programs and services. Our attendance continues to rise at educational events which tells us our seminars and conferences are helping educate our constituents and provide them tools to be successful in supporting individuals with Down syndrome. We also send out surveys and request evaluation feedback regarding specific events to obtain information on how to improve service delivery. Our seminars and conference evaluations indicated a satisfaction rate of 85% or higher on average. 
Examples of Program Success The Guild regularly receives thank you notes, and donations with kind words about the impact our programs are having on the community. We have also seen a significant increase in the number of families, educators and professionals who request our materials and attend our events.  Down syndrome associations across the US seek DSG out for consultation and guidance to launch programming and implement best practices in their area.  DSG was awarded the TASH 2013 Positive Images in the Media award for the film "Just Like You - Down Syndrome."  In 2014, DSG received the Education award for the film from the National Down Syndrome Congress. 
Description Parent to Parent mentoring and assistance is the primary role of the DSG. Our New Parent Packet is an expectant parent packet provided to all local physicians who may provide a diagnosis of Down syndrome. DSG's award winning New Beginnings Magazine is designed to educate and comfort new parents of a child with Down syndrome. DSG's Parent to Parent Network provides an immediate match between experienced parents and newly diagnosed parents of a child with Down syndrome to offer support, friendship and information. Connections is our bi-monthly newsletter, distributed to 3,500 households consisting of parents, educators, physicians, extended family members and other interested parties.  We host quarterly support breakfasts for new parents and extended family members and also have a new parent match program that matches up new parents with other parents of individuals with Down syndrome for a resource.  DSG provides information and a welcome basket valued at $300 to new parents as soon as we learn of a diagnosis.  In 2017, DSG delivered 46 new parent welcome baskets, and welcomed over 80 attendees at quarterly support breakfasts.  Our community groups hosted over 100 educational and social activities for DSG families.
Program Budget $85,183.00
Category Diseases, Disorders & Medical Disciplines, General/Other Down Syndrome
Population Served Adults
Short-Term Success The Guild defines short term success by the number of families who access our programs and refer other families to us for support.
Long-Term Success Members are engaging with us sooner after receiving a diagnosis and are staying more engaged across the lifespan. With our expansion and adding sibling and extended family support, we have more participation from families than in previous years. DSG defines these programs as successful as our members regularly provide us feedback in the form of thank you notes, cards and gifts stating these resources are invaluable to them on the journey of parenting, educating or serving an individual with Down syndrome.
Program Success Monitored By The Guild hosts periodic focus groups to obtain feedback on our programs and services. We also send out surveys regarding specific events to obtain member feedback on how to improve service delivery.
Examples of Program Success DSG has nearly a 100% catch rate with new families thanks to wonderful partnerships with 22 hospitals, geneticists, OB/GYN's and pediatricians. We are working with more prenatally diagnosed families then ever before and physicians refer their patients to DSG with confidence that we can provide critical support and resources. The Guild regularly receives thank you notes, and donations with kind words about the impact our programs are having on the community. We have also seen a significant increase in the number of families, educators and professionals who request our materials and attend our events. We have also been spotlighted by both National Down Syndrome organizations in their publications. Attendance at our 2017 events was at an all time high. Our educational conferences are rated highly by our members and attended by parents/educators/therapists from surrounding states as well. Parents report 90% satisfaction rate with our teen program and pre-k program.
Description DSG hosts social and educational events for people with Down syndrome across the lifespan. We have 7-11 year old parties, a teen program serving 12-18 year olds and bi-monthly activities for those who are 19+ years of age through our Club 3-21 Adult program. These events provide opportunities to our members to make new friends, share resources, and enjoy one another's company. They also open the doors to parents finding mentors who may be a bit further on the journey of parenting a child, teen or adult with Down syndrome. These connections are pivotal in improving quality of life and opportunities. 
Program Budget $77,806.00
Category Diseases, Disorders & Medical Disciplines, General/Other Down Syndrome
Population Served People/Families with People of Developmental Disabilities, Adults
Short-Term Success The Guild defines short term success by the number of families who access our programs and refer other families to us for support.
Long-Term Success The Guild defines these programs as successful when our members access them and provide us feedback that they have made an impact on their lives as well as the community at large. We are also proud to have other Down syndrome parent groups from across the country contact our organization to mimic similar programs in their area.
Program Success Monitored By The Guild hosts periodic focus groups to obtain feedback on our programs and services. We also send out surveys regarding specific events to obtain member feedback on how to improve service delivery.
Examples of Program Success Our members are now engaging with us longer across the lifespan as we have added programs that "grow up" with their children. We see greater engagement from adult members with Down syndrome than in previous years based on our expansion of services. Our adult events used to be held quarterly and we had 30-40 attendees. Now that they are offered bi-monthly we have 50-75 attendees join us and families say the events are the highlight of the month. 
Description A New Parent Support Group meets quarterly for informational meetings that feature guest speakers and panels of peer families to lead discussions. Currently DSG supports 14 community groups in various locations in Greater Kansas City.  The Meal Voucher program helps offset expenses incurred by parents while staying in the hospital with their child.   Our Birthday Club Program remembers children and adults with Down syndrome on their birthday.
Program Budget $21,500.00
Category Diseases, Disorders & Medical Disciplines, General/Other Down Syndrome
Population Served People/Families with People of Developmental Disabilities
Short-Term Success The Guild defines short term success by the number of families who access our programs and refer other families to us for support.
Long-Term Success The Guild defines these programs as successful when our members access them and provide us feedback that they have made an impact on their lives as well as the community at large. We are also proud to have other Down syndrome parent groups from across the country contact our organization to mimic similar programs in their area.
Program Success Monitored By The Guild hosts periodic focus groups to obtain feedback on our programs and services. We also send out surveys regarding specific events to obtain member feedback on how to improve service delivery.
Examples of Program Success The Guild regularly receives thank you notes, and donations with kind words about the impact our programs are having on the community. We have also seen a significant increase in the number of families, educators and professionals who request our materials and attend our events. We have also been spotlighted by both National Down Syndrome organizations in their publications.
Description
Adolescent years can be a particularly challenging time for anybody, especially teens with Down syndrome.  DSG's STARS program provides teens who are 12-18 years of age an opportunity to make friends, explore vocational opportunities, volunteer in their community, and develop their interests. 
Program Budget $15,000.00
Category Youth Development, General/Other Youth Development, General/Other
Population Served Adolescents Only (13-19 years), At-Risk Populations, Elderly and/or Disabled
Short-Term Success The STARS programs serves 150 teens in 37 counties in Kansas and Missouri.  DSG provides weekly social, prevocational, service related and life skills based activities to promote independence, inclusion and successful transition into adulthood.
Long-Term Success The goal of the STARS program is to provide social, pre-vocational, and life skills to help each teen achieve their greatest potential.
Program Success Monitored By
Program attendance and quarterly satisfaction surveys.
Examples of Program Success Attendance has increased, especially with increased focus on activity locations to the eastland and northland area.  This tells us we are meeting the need of an unserved population.
CEO Comments The Down Syndrome Guild of Greater Kansas City serves over 1600 families caring for a loved one with Down syndrome. It is our goal to be the number resource and authority on Down syndrome in the Kansas City area. We seek to provide services and programs that are beneficial throughout the lifespan of an individual with Down syndrome. Our programs are intended to connect families, communicate accurate information on Down syndrome and to educate parents, educators, professionals and the general community. DSG currently funds fourteen community groups that meet in various areas of Kansas City. These groups provide vital support and resources for our families in their immediate area. DSG continues to partner with local schools, hospitals, libraries, media outlets and civic groups to create greater awareness and acceptance of individuals with Down syndrome. It is only through our continued successful fundraising, private community support and generous grants that we can continue to fulfill our mission. Donations may be designated for a specific program or initiative and community involvement in any of our program planning is encouraged.
Executive Director/CEO
Executive Director Dr. Jason Drummond
Term Start Sept 2017
Senior Staff
Title Chief Operating Officer
Title Chief Development Officer
Staff
Paid Full-Time Staff 8
Paid Contractors 0
Volunteers 985
Retention Rate 75%
Staff Diversity (Ethnicity)
Asian American/Pacific Islander 0
Caucasian 9
Native American/American Indian 0
Staff Diversity (Gender)
Female 7
Male 2
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 Under Development
Organization Has a Strategic Plan No
Management Succession Plan Under Development
Organization Policy and Procedures Under Development
Nondiscrimination Policy Under Development
Whistleblower Policy Yes
Document Destruction Policy No
Affiliations
AffiliationYear
Affiliate/Chapter of National Organization (i.e. Girl Scouts of the USA, American Red Cross, etc.) - Affiliate/chapter1984
Awards
Award/RecognitionOrganizationYear
Meritorious Service Award to Executive Director Amy AllisonNational Down Syndrome Congress2006
Excellence in Nonprofit Communications 1st place for 2005 Annual ReportCouncil on Philanthropy2006
Excellence in Nonprofit Communications 2nd place for our Inclusions Solutions NewsletterCouncil on Philanthropy2006
Convention Support AwardNational Down Syndrome Congress2007
National Parent Group AwardNational Down Syndrome Congress2007
Philly Award for 2008 Annual ReportNon Profit Connect2009
Excellence in Nonprofit Leadership AwardSupport KC2010
Excellence in Media Award--Just Like You Down Syndrome FilmTASH2012
National Education Award--Just Like You Down Syndrome FilmNational Down Syndrome Congress2013
Government Licenses
Is your organization licensed by the government? No
CEO Comments The Down Syndrome Guild continues to experience growth in programming and member services. With a small staff we are very cognizant of utilizing our resources and personnel wisely. Adding new programs will require more funding and staff to insure quality and sustainability long term. We are looking at all options for meeting members needs while enhancing our staff. 
Board Chair
Board Chair Mr. Mike Frazier
Company Affiliation Reece & Nichols
Term Jan 2018 to Jan 2021
Board Members
NameAffiliation
Ms. JoAnn ButaudAttorney
Mr. Bob FaganCBRE
Mrs Amy FaussCrossFirst Bank
Mr. Mike FrazierReece & Nichols
Mrs Deborah KassCommunity Volunteer
Mr Michael KulpKBP Foods
Mr. John MelvinUS Bank
Mr. Joe RoosBKD
Mr. Chris SorensenJE Dunn Construction
Board Demographics - Ethnicity
African American/Black 1
Asian American/Pacific Islander 0
Caucasian 7
Hispanic/Latino 0
Native American/American Indian 0
Board Demographics - Gender
Male 6
Female 3
Unspecified 0
Governance
Board Term Lengths 3
Board Term Limits 2
Board Meeting Attendance % 72%
Written Board Selection Criteria? Yes
Written Conflict of Interest Policy? Yes
Percentage Making Monetary Contributions 100%
Percentage Making In-Kind Contributions 100%
Constituency Includes Client Representation Yes
Number of Full Board Meetings Annually 4
Standing Committees
Executive
Finance
Board Governance
Development / Fund Development / Fund Raising / Grant Writing / Major Gifts
Advisory Board Members
NameAffiliation
Mr. Michael Gary KulpKBP Foods
CEO Comments
 Areas considered for growth include:
  • Developing a robust employment program and explore opportunities to educate employers on the benefits of hiring individuals with Down syndrome.
  • Enhancing programming for teens and adults with Down syndrome
  • Collaborating with school districts to create positive educational outcomes
  • Recruiting, training, and monitoring a core group of volunteers
  • Expanding public awareness of Down syndrome through educational conferences and outreach
  • Enhancing information shared with our members on research on Down syndrome
  • Reaching out to the urban core and under-served areas
  • Increasing our legislative advocacy
  • Reaching out to physicians to ensure quality medical care and sensitive interactions when informing a family prenatally or post-natally that their baby has Down syndrome
Financials
Fiscal Year Start Jan 01, 2019
Fiscal Year End Dec 31, 2019
Projected Revenue $1,518,000
Projected Expenses $1,507,000
Endowment Value $589,000
Spending Policy N/A
Form 990s
2016 DSG 990
2015 DSG 990
2014 DSG 990
2013 DSG 990
2012 DSG 990
2011 DSG 990
2010 DSG 990
2009 DSG 990
2008 DSG 990
Audit Documents
IRS Letter of Exemption
Foundation Comments
  • FY 2017, 2016, 2015: Financial data reported using IRS Form 990.  
  • Foundation/corporate revenue line item may include contributions from individuals.
Detailed Financials
 
Revenue SourcesHelpThe financial analysis involves a comparison of the IRS Form 990 and the audit report (when available) and revenue sources may not sum to total based on reconciliation differences. Revenue from foundations and corporations may include individual contributions when not itemized separately.
Fiscal Year201720162015
Foundation and
Corporation Contributions
$282,625$731,305$259,423
Government Contributions$6,500$7,500$8,000
Federal------
State------
Local------
Unspecified$6,500$7,500$8,000
Individual Contributions------
$23,219$7$145
$45,746$58,387$74,304
Investment Income, Net of Losses$11,998$36,402$42,492
Membership Dues----$0
Special Events$600,661$4,969$11,838
Revenue In-Kind$96,785$5,000$0
Other--$380$784
Expense Allocation
Fiscal Year201720162015
Program Expense$600,468$582,583$610,895
Administration Expense$236,932$108,519$120,627
Fundraising Expense$136,341$6,400$817
Payments to Affiliates------
Total Revenue/Total Expenses1.001.201.22
Program Expense/Total Expenses62%84%83%
Fundraising Expense/Contributed Revenue------
Assets and Liabilities
Fiscal Year201720162015
Total Assets$1,904,707$1,800,566$1,646,715
Current Assets$1,290,208$1,273,252$1,148,122
Long-Term Liabilities$1,767$577$0
Current Liabilities$65,101$49,313$40,056
Total Net Assets$1,837,839$1,750,676$1,606,659
Short-Term Solvency
Fiscal Year201720162015
Current Ratio: Current Assets/Current Liabilities19.8225.8228.66
Long-Term Solvency
Fiscal Year201720162015
Long-Term Liabilities/Total Assets0%0%0%
Top Funding Sources
Fiscal Year201720162015
Top Funding Source & Dollar Amount -- --First Downs for Down Syndrome $500,000
Second Highest Funding Source & Dollar Amount -- --Anonymous $50,000
Third Highest Funding Source & Dollar Amount -- --Individual Donor $50,000
Capital Campaign
Currently in a Capital Campaign? No
Capital Campaign Anticipated in Next 5 Years No
Organization Comments
The Down Syndrome Guild fulfills its mission through funds obtained from fundraisers and grants throughout the year. A variety of fundraisers are held throughout the year to promote awareness and raise funds. The events are as follows: Private Cellar Wine Tasting and Auction, Tee Up for Down Syndrome Golf Classic, Step Up for Down Syndrome Walks, First Downs High School Football Fundraiser and Dress Down for Down Syndrome Days. The work of the DSG would not be possible without the financial support of the individuals, companies, organizations, and groups who are willing and ready to turn ideas into action and support our mission. We greatly appreciate those who support the DSG. We believe in prudently managing our financial resources, implementing innovative strategies, holding ourselves accountable for results and providing quality programs and services. All contributions are valued and recognized as integral to helping DSG fulfill our mission. For more information on how you can support the DSG, please contact 913-384-4848 or send an email to info@kcdsg.org
Other Documents
Organization Name Down Syndrome Guild of Greater Kansas City, Inc.
Address 5960 Dearborn Street
Ste. 100
Mission, KS 66202
Primary Phone (913) 689-2773
Contact Email stoll@kcdsg.org
CEO/Executive Director Dr. Jason Drummond
Board Chair Mr. Mike Frazier
Board Chair Company Affiliation Reece & Nichols
Year of Incorporation 1985