2015 ANNUAL REPORT

CELEBRATE DOWN SYNDROME

PLUS ONE : A UNIVERSAL SYMBOL FOR DOWN SYNDROME

In 2015, DSG’s Public Awareness Committee recognized that organizations supporting people with Down syndrome (DS) locally, regionally, nationally and internationally are all using different symbols. We saw this as an opportunity. The +1 symbol was developed to create greater awareness and acceptance for people with DS and to bring unity in messaging from DS organizations regard-ing people who share one common thing—one extra chromosome. We believe the +1 symbol will ultimately bring better outcomes to individuals living with DS and those who advocate to help them achieve their full potential. The symbol in its purest sense presents one extra chromosome. Yet the concept of “plus one” also conveys the need for inclusion. With this symbol we hope to generate an international sense of pride for what it means to live with DS or love someone living with DS. +1 gives self advocates, families, friends, healthcare profession-als and educators (our inner circle) something to rally around. Our committee is currently planning a national launch strategy to encourage influencers and organizations to be a part of what makes DS so awesome. We hope you will join us in promoting +1.

A RECORD BREAKING YEAR.

In 2015 Kansas City really stepped up and helped DSG break a world record. We are so proud to share that we are the first Down syndrome association anywhere in the world to raise more than $500,000 at the Step Up for Down Syndrome Walk. Our gratitude is immeasurable for all the team captains, walkers, donors, sponsors and volunteers who made history with us the day of the walk. Now our sights are set even higher!

DSG set a few other important records this year. Our staff delivered 57 welcome baskets to new or expectant parents, we provided more peer presentations, behavioral observations and attended more IEP meetings than in years past. We were also one of the few associations in the US to launch a formal employment program to help adults with Down syndrome achieve their dreams of getting and keeping a job. DSG launched our BCBA program which allows our members to access up to six sessions with a board certified behavior analyst to address behavior challenges. The newly launched program has already served 30 families and regularly has a waiting list.

The Just Like You Down Syndrome Film DSG co-produced with JLY Films has now been viewed over 360,000 times and has been translated into Spanish, and Portuguese. We are in discussions with Poland, Iceland and Russia to also translate the film. AMAZING!

DSG provided consulting services to several Down syndrome associations throughout the US in 2015. Leaders routinely seek DSG out for advice on modeling our innovative and life changing programs, how to handle staff or member issues, strategic planning, ensuring financial stability and launching awareness campaigns. The highlight of our year of collaboration would have to be seven colleagues from Russian Down syndrome organizations coming to Kansas City for two weeks to work with our staff and meet some of our wonderful partners. Their trip was funded by a State Department grant DSG helped them secure and part of this grant includes DSG staff going to Russia in 2016. It’s exciting and humbling to know that the work of the DSG is changing lives around the United States and will also impact people on the other side of the world in Russia.

While we have much to be proud of, there are still records out there to break! We’d like to have 15,000 people in attendance and raise $750,000 at the 2016 Step Up for Down Syndrome Walk. Increasing our conference and seminar attendance tenfold would be a dream come true. It would be amazing to have all students with Down syndrome taught in their home schools and receiving the appropriate accommodations and modifications to be successful. These records may seem elusive, but DSG is certainly up to the challenge and with your help and continued support, we can make and break new records together.

AMY ALLISONExecutive Director

TOM WAGSTAFFBoard President

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OUR OUTREACH BRINGS RESULTS

In 2015, DSG provided a variety of awareness presentations to churches, daycare centers, after school programs, civic organizations, youth groups, scout troops and adult service providers. We also provided training or consultation to several Down syndrome organizations across the US and internationally in Mexico, Iceland, Russia and Nigeria.

DSG formed a partnership with Children’s Mercy Hospital to have second year medical residents spend a day in our office. Doctors learn more about Down syndrome, ongoing medical and cog-nition research, best practices for working with patients and parents, reviewing the DS Healthcare Guidelines, and benefit by hearing personal stories from parents and self-advocates

Over 395 attendees packed the cafeteria and gymnasium to celebrate the 10th anniversary of World Down Syndrome Day. We also recognized 21 Community Champions for their amazing support, advocacy and care for DSG members and their families. 2015 winners included educators, physicians, coaches, paraprofessionals, therapists and martial arts instructors.

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WE GOT SOCIAL IN 2015!

• Just Like You – Down syndrome film, launched in 2012 reached 360,000 views on YouTube

• Facebook page likes 8,686 that’s 1,263 new followers from 45 countries in 2015

• We are now on Instagram (@kcdsg) and LinkedIn…in addition to Facebook and Twitter

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65 book bundles, each filled with four books and one DVD to help put accurate, up-to-date materials in the hands of educa-tors, therapists, professionals and parents.

57 new babies and their parents were welcomed to the Guild in 2015. They packed the office several times at New Parent and Extended Family Support Breakfasts which provide opportuni-ties to connect with other members, hear from parents of older children with Down syndrome and get information about local and national resources available to families.

35 families experiencing an expected or unexpected overnight stay at the hospital with their loved one with Down syndrome enjoyed a goodie bag of snacks, soda and $50 meal voucher to help with costs associated with their stay at the hospital. Our free Counseling Program helped 11 DSG families find the support they needed in 2015. The program continues to be a vi-tal service to our members and their families since its inception.

20 gifts of knowledge were provided through peer presentations to classmates of students with Down syndrome so they could learn how to be a good friend and build a better understanding about the medical condition.

We added NEW DSG Gear to our store! We have something for everyone -- T-shirts, baseball Tee’s, socks, tumblers and cell phone wallets were just a few of our newest items in 2015 which helped generate $17,000 in revenue!

360,000 Number of times our Just Like You Down Syndrome video has been viewed online at YouTube.

600 parents, educators, therapists and service providers attend-ed our seminar series.

3500 households receive DSG’s award winning Connections Newsletter which is chock full of tips, strategies, resources, sib-ling and parent perspectives and event information.

The Public Awareness Committe created the first ever universal symbol for Down syndrome.

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“Three cheers for Transition Bootcamp! I sat through it once already but needed to go back a second time to really make sure I understood the process and how my involvement is critical to my daughter’s success.”

“Our family is so grateful to DSG for all they have done to work with our school district. Staff did a peer presentation, they trained paras and they screened the Just Like You film at an all school assembly. Our daughter’s peers and teachers are more prepared to help her succeed thanks to the DSG!”

My wife and I look forward to the marriage retreat all year long. It’s the one weekend we get away and truly focus on each other. Thanks DSG!”

“Attending Smart Start classes really helped us prepare our son for Kindergarten and made the transition much smoother on our family.”

SHARING KNOWLEDGE

DSG’s Keys to Success Conference was attended by 225 parents, educators and professionals from six states. Topics covering the lifespan of individuals with Down syndrome were shared and attendees gave this inspirational day of learning rave reviews.

Our Seminar Series featured four topics each offered twice throughout the school year. Topics in 2015 included effective behavior strategies, promoting early childhood success, enhancing speech and communication and peer mentoring programs. Over 600 parents, educators, therapists and service providers from 35 school districts attended these highly rated seminars.

Through our Parents and Schools in Partnership Program we worked collaboratively with school districts who have named Down Syndrome Specialists. They receive training and resources from DSG to insure students succeed. Our quarterly breakfasts for specialists brought 35 school districts together to brainstorm creative solutions and address challenges educators face. DSG provides ongoing consultation, staff training, peer presentations and behavioral observations to assist educators to meet the needs of their students.

DSG’s award winning Inclusion Solutions Newsletter is now received by over 600 recipients. Tips for including and educating students along with updated resources and research are shared to ensure best practices are being utilized in the classroom.

DSG continued our Smart Start Pre-Kindergarten program with 14 families “graduating” in April. Parents feel they and their children are now more prepared to enter the school system with confidence having attended the Smart Start program. The program has now been replicated by several Down syndrome groups.

Transition Bootcamp was attended by 13 families who have teens with Down syndrome. The series of four classes helps parents better understand and participate in the transition process and teens better understand their role in being a self-advocate and preparing for adulthood.

The Mind Your Marriage retreat welcomed 43 couples who spent a romantic weekend at a local KC hotel after reconnecting through a series of activities facilitated by a motivational speaker. The retreat is a wonderful opportunity for respite and reflection for DSG parents.

DSG staff provided 30 behavioral observations and consultations, 20 peer presentations and attended 22 IEP meetings in 2015. We value our partnerships with families and schools and seek to provide resources and tools to help all students with Down syndrome achieve their full potential.

DSG sponsored four members attendance at the annual Buddy Walk on Washington hosted by NDSS. Our representatives met with legislators in KS and MO and requested their support on increasing research dollars, passing the ABLE Act and joining the congressional Down syndrome caucus.

PUBLIC EDUCATION

“I was a para for the SMS district and began volunteering for the DSG then. I love volunteering for such a wonderful organization and wanted to continue even after I moved on from the district. I only wish I could be available more often than I am.” – DSG adult volunteer

Dedicated volunteers donate time and talents to assist with over 100 DSG activities annually. In 2015, 11,000 hours were donated by volunteers at DSG Events, serving as a committee or board member, and working as interns in the office each week. We have 800 active volunteers and worked with 8 corporate groups in 2015 who provided administrative support within our office, participated in “Dress Down Days,” volunteered at all guild events, or collected in-kind donations for New Parent Welcome Baskets. While researchers calculate volunteer service at a rate of $23.07 an hour, the real value of our volunteers is priceless. We receive wonderful feedback from our volunteers who say it is a joy to help DSG fulfill our mission.

Our Volunteer Voice Newsletter is distributed to over 1000 recipients in the Greater Kansas City area who actively engage with us throughout the year. In addition to the hours of service, DSG volunteers serve as ambassadors within the community, helping to foster positive attitudes and creating awareness for people with Down syndrome and the mission of the DSG.

In 2015, DSG recognized Jon Bachura and Alyson Lewis as Volunteers of the Year for their dedicated service to the DSG.

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The 2015 Volunteers of the Year gave their time and talents to support DSG events and take our seminars online! Alyson has served on the prom committee and supported our teen and adult programs, in addi-tion to her daily dedication as a special education teacher. Jon, a DSG dad, has increased marketing strength and social media growth for DSG over the past two years. Most notably, he helped put our seminars online and expand our reach through social networking. We also welcomed 12 guests from around the globe who work with people with Down syndrome and visited with the DSG to learn about more resources, strategies and successful programs to implement in other countries.

The Down Syndrome Guild launched a new program in April 2015. Our Helping Individuals Reach Employment Dreams (HIRED) program offers adults with Down syndrome support to obtain and keep employment that best suits their skills and interests. With guidance from the individual with Down syndrome and their family, the DSG identifies potential career opportunities, goals, and interests while assessing the strengths and talents of the candidate. This allows us to set the stage for success and make a good employment match.

We then connect employers with capable employees to increase their profitability. DSG will provide support to employers and employees through ongoing training, workplace accommodations and evaluation to ensure the success of both parties. DSG provides team training to employers to support and identify on-the-job needs for the employee with Down syndrome. Ongoing support and job coaching services are available as needed to promote long term employment.

“Our dream for our daughter Aubree is to find competitive employment. She has had a few successful opportunities and the longest job was two years at a law firm, who unfortunately relocated over 50 miles away. Currently, we are working with DSG’s HIRED program. We are so appreciative for the help and look forward to Aubree finding a new job.” – DSG Parent

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FUTURE STARS

DSG provides opportunities for socializing, exploring employment opportunities and building independence through weekly activities at the Special Teens Achieving Real Success (S.T.A.R.S.) program. Over 150 teens between the ages of 12-18 can prepare for adulthood through a variety of activities focused on friendship, volunteerism, employment, and self-confidence, all while in a supportive and safe environment. In 2015, DSG provided 60 accessible events with an average attendance of 19 teens per event. The maturity, and growth in both social and prevocational skills observed in these teens is unmatched by any other programs in the area. We look forward to our teens graduating from S.T.A.R.S. and rolling into the adult and H.I.R.E.D. programs as we continue to provide lifelong activities and opportunities for our members.

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“STARS has really helped our daughter come out of her shell. It’s so important for her to have the opportunity to be around peers who have Down syndrome. We are so grateful for this program.”

“I love my friends at STARS! We get to do lots of fun activities and learn new things.”

GETTING WISER

In 2015, DSG increased frequency of adult activities to monthly events focused on fun and fitness. Adults attending ballroom dancing lessons, kick-boxing classes, painting parties and tried out their acting skills at a “murder mystery dinner,” -- just to name a few of the new events in 2015. These events are accessible to over 300 members ages 18 and older, with an average attendance of 39 adults at each event. With growing interest and more S.T.A.R.S. graduating into the Adult program, DSG looks forward to doubling the frequency of events in the next year!

“My daughter looks forward to attending DSG adult events. She has made some great friends through this program and we now make it a point to hang out with them out-side of DSG sponsored activities.”

ADULT EVENTS

“My sister loves attending DSG adult activities. He comes home super excited and asking when the next event will be.”

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Holiday Party 850 attendees

Down Syndrome Conference 225 attendees

Power Play Family Day 500 attendees

Easter Eggstravaganza 350 attendees

30th Anniversary BBQ 345 attendees

Weston Red Barn Farm 596 attendees

DSG Prom 750 attendees

Mother’s Day Luncheon 100 attendees

Mind Your Marriage Retreat 43 couples

Support Breakfasts 72 families

In 2015, DSG revenue was $871,291 which reflects a 9% decrease from 2014. We received $500,000 of our funding from First Downs for Down Syndrome.

Expenditures in 2015 were $749,296 with the following breakdown. We are pleased to report that only 18% of our funding is used for administrative expenses. This means 82 cents of every dollar is available to directly support our members.

DSG contributed $40,000 to our endowment fund in 2015. Our goal is to contribute 5% of unre-stricted revenue each year along with memorial bequests until our fund reaches one year’s operating expenses. We currently have $457,161 in our endowment fund which helps safeguard the future of the organization.

DSG is completely dependent on donations, grants and fundraisers to meet our operational budget. We are so grateful for the support we receive from individuals, corporations, foundations and groups who give generously to support our mission and help us turn ideas into action.

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Community Support

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Special thanks to the following for their extraordinary support in 2015:

First Downs for Down Syndrome Lucille and Bruce Lambert FoundationDyan & Abel Mojica Bridget & John MurphyPlatte County Board of Services Variety Children’s CharityIsle of Capri Casino Mitchem/Chase/Bratton familiesCPS Foundation Royals Charities

GAINING GROUND FOR A WINNING CAUSE

First Downs for Down Syndrome (FDFDS) is a non-profit 501(c)3 organization that teams with the Kansas City Chiefs Offensive Line to raise money for the Down Syndrome Guild, the Down Syn-drome Clinic- at Children’s Mercy Hospital, the University of Kansas- Adult Down Syndrome Clinic, the Lee Ann Britain Infant Development Center at Shawnee Mission Medical Center, the Mission Project, and the Kansas City Down syndrome community.

The 12th Annual Private Cellar Wine Tasting & Auction…was very successful with over 450 guests and raising over $195,600, making this year’s wine event the most raised.

Special guests included current Kansas City Chiefs Offensive Linemen- Jeff Allen, Zach Fulton, Eric Kush, former Chiefs players Shawn Barber, Jon McGraw, and our special prom couple- Carissa Myers and Chris Ringot. Cheers to this year’s event hosts, Bridget & John Murphy and honorary VIP, June and Larry Rouse.

Guests enjoyed sipping and bidding on unique wines from Kansas City’s foremost collectors, while enjoying the spectacular view from the 24th floor of the law firm of Shook Hardy & Bacon L.L.P.

First Downs Golf Tournament & Huddle Time Sports Auction…were both held at Shadow Glen Golf Club in Olathe, KS. The golf tournament included not only a fun day of golf at the beautiful Shadow Glen, but each golfer enjoyed shopping in the gift salon, food, drinks, hole contests with fabulous prizes, and a chance to win a car! Golfers had the opportunity to meet and play against celebrity golfers- Mike Maddox, Bud Stallworth, Will Shields, Casey Wiegmann, and special golfers Blake Docking and Chris Ringot also showed off their talents.

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Mike Frazier, President Reece & Nichols Real Estate

Tim Deves, Vice President Edward Jones

Chris Sorensen, Treasurer JE Dunn Construction

JoAnn Butaud, Secretary Evans & Mullinix P.A.

Tim Bratton Community Volunteer

Jimmy Jack Clayton Real Living Real Estate

Rod Crawford Glazers

Gordon Docking Kids TLC

Bob Fagan CBRE

Dr. Laurie Hornberger Children’s Mercy Hospital Down Syndrome Clinic

Rebecca Johnson Central Exchange

Mike Kulp KBP Foods

Doug Laird

Polsinelli Shughart, PC

Ryan Lilja Community Volunteer

John Melvin

U.S Bank

Tony Miceli KBP Foods

Larry Rouse

Community Volunteer

Sarah Tiedt Mariner Wealth Advisors

Tom Wagstaff, Jr. Wagstaff & Cartmell, LLC.

Kevin Walker CBIZ

At Huddle Time, golfers and Huddle Time guests bid on unique sports memorabilia and vacation get aways. Stephen St. John with Sports Radio 810 was the emcee, along with former Kansas City Chiefs- Tim Grunhard and Ryan Lilja. Guests enjoyed fabulous food, drinks and the opportunity to mingle with former Chiefs players! The Golf Tournament & Huddle Time raised over $206,800- a record breaking amount.

The 20th Annual Step Up for Down Syndrome Walk & Festival… was held on Saturday, October 17th at Berkley Riverfront Park. The Step Up Walk was an overwhelming success with over 10,500 people in attendance, 360 teams and not to mention, the event raised over $513,000! Walkers enjoyed a hot lunch courtesy of KBP Foods, treats, music from Happy Faces Entertainment, crafts, carnival games, LOTS of pumpkins, family/fellowship and festivities for every age group. Kansas City is very proud to be recognized as the largest walk in the Nation!

BOARD OF DIRECTORS

Additional 2015 fundraising activities by and for FDFDS include:

• KBP Foods & KC KFC Stores- annual coupon book sales drive (May & October 2015)

• 8th Annual Kentucky Derby Gala- in partnership with the Mission Project

• Summer Concert Series – in partner-ship with the Mission Project

• First Down High School Football Fundraiser

5960 Dearborn StreetSuite 100Mission, Kansas 66202

VISIT www.kcdsg.org CALL 913-384-4848 EMAIL info@kcdsg.org

Photo credits: thestudio56.com kelcimariephotography.com harveyhousephotography.com estudioinnovacion.com

NON-PROFIT ORGU.S. POSTAGE PAID

OLATHE, KSPERMIT NO. 932

MISSIONThe 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. DSG seeks to provide the entire community with information and education to broaden awareness and foster positive attitudes regarding people with Down syndrome.