July August 2019 Connections

Volume 24 Issue 102 July/August 2019

CONNECTIONS

Building a network for individuals with Down syndrome, their families and the professionals who serve them.

COUNTIES PARTNER KC Step Up Walk Saturday October 26th
ON PATHWAYS
Save the date and plan to join us for one of the largest celebra ons for people
EITAS mission is to support individuals with with Down syndrome in the world! This family fes val is fun for all ages and
developmental disabili es and their families in sure to put a smile on your face. Make a team to celebrate your loved one with
Jackson County, MO with services that respect Down syndrome and help raise funds to support DSG’s vital programs and ser-
their choices, increase their opportuni es, vices serving families across the lifespan.
encourage their independence, and assist their
inclusion in all aspects of the community. IMPORTANT DATES

DSG applied for a community grant to help Online registra on OPEN NOW
provide financial assistance to our Jackson
County families enrolled in the Pathways T-shirt deadline 5 PM Sept. 25th
Program. We were thrilled to receive funding
through EITAS and appreciate their strong T-shirt pickup 9AM-1 PM Oct. 19th
enthusiasm for our newly launched program.
Top fundraising deadline 1 PM Oct. 19th
Visit: eitas.org
Step Up Walk Oct. 26th

Online dona ons close Dec. 1st

ONLINE REGISTRATION OPEN: MY.KCDSG.ORG/STEPUP

DSG also applied for a grant through Pla e Contact [email protected] for more informa on on making a team, spon-
County Board of Services for the Develop- sorship opportuni es or to request promo onal materials to help you meet
mentally Disabled. PCBS mission is to devel- your fundraising goals! We can’t wait to step up for Down syndrome at
op tools and provide resources that assist Arrowhead Stadium on October 26th.
people to lead the life of their choice. They
provided DSG with generous funding to help
Pla e County residents access Pathways.

Visit: pcbsdd.org

Jo Ann Butaud Deborah Kass Confessions from a Dad of a Child With DS
Bob Fagan Mike Kulp
Amy Fauss John Melvin I parent a child with Down syndrome, and I have
Mike Frazier Joe Roos four true confessions:

1. I am scared. To be honest, I am scared of the
future. I enjoy our day-by-day life, but I do fear the
future. Will my son make friends? I am scared I
can’t protect him from the hurts that lie ahead
when others treat him different. I am scared he will
never experience an independent life. I am scared I
will either push him too hard or not hard enough to
meet his goals. I am scared I won’t be the father he
will need later on in life. I am scared he won’t find
the love of his life. I enjoy everyday as it is but I am
scared of the future.

2. Some mes, I compare my child to yours.

It is really hard to not compare my child to yours when all we want to do as parents is brag
on our children. So when your 1-year-old takes his first steps, I can’t help but compare my 2-
year-old just learning to pull himself up. When your toddler starts talking, I can’t help com-
pare my son who is frustrated because he can’t communicate with me. When your child can
do simple tasks such as drink from a cup, I can’t help but not compare my son who s ll drinks
from a bo le. I know we should never compare our children to others because they are all
different, but to say I don’t would be a lie. When my 2-year-old is s ll in the baby class at
preschool while your kids all leave him behind, it is hard not to compare.

3. Some mes, I blame myself for his delays.

Unfortunately, the hardest thing for me as a father is to have to swallow that my wife has to
work as well. I would love to be able to have my wife stay home and work with my son to
meet his milestones, but we can’t. Between medical bills, mortgage, car payments, credit
cards, and everything else, we both need to work. I am a director of a Children’s shelter and
unfortunately that does not cover all of our needs. I work a second job, but I also want some

me to spend with my family. I o en blame myself when I see my son struggling because my
wife has to work. As a husband and father, this is hard to get over.

4. I learn more from my 2‐year‐old than he learns from me.

Connec ons is a bi-monthly publica on of I have fears, I have guilt, I get jealous, I feel shame — but Jamison just has love. He doesn’t
the Down Syndrome Guild of Greater Kan- fear the future because he is just happy to be alive. He doesn’t get jealous of other kids, he
sas City. Please contact the office at (913) just loves doing things his way on his schedule. He does not shame us for working, but he
384-4848 if you have any ques ons about smiles when we pick him up reminding us of his love for us. Jamison has uncondi onal love
the contents of this newsle er or would and it shows. I may feel like a failure of a father, but when I hear him scream, “Dada” and he
like to contribute an ar cle. crawls to my leg, I know Jamison is content just the way things are.

Disclaimer: The informa on provided is done so Originally published on The Mighty at h ps://themighty.com/2019/04/confessions‐dad‐
through a variety of sources including names pro- down‐syndrome/ Reprinted with permission from proud dad Jamie Scher
vided by members of DSG, networking, referrals by
professionals, other agencies, mail adver sements, Are you a ending DSG DADS events? Great way to meet other fathers and share any con‐
etc. DSG cannot a est to the quality or qualifica- fessions you may want to get off your chest! Visit dadskc.org or email john‐
[email protected] or [email protected] our group leaders to learn about upcoming ac vi‐
ons of the individuals or organiza ons described.
We encourage you to be a wise consumer and ask es.
ques ons in order to make your own independent
evalua on of u lizing the services described. We
share informa on about research projects but in
doing so, it is not reflec ve of endorsement.

TSA Cares Helps Alleviate Travel Woes

TSA Cares is a helpline that provides travelers with disabili es, medical condi ons
and other special circumstances addi onal assistance during the security screen-
ing process.
Call 72 hours prior to traveling with ques ons about screening policies, proce-
dures and what to expect at the security checkpoint. Travelers requiring special
accommoda ons or concerned about the security screening process at the air-
port may ask a TSA officer or supervisor for a passenger support specialist who
can provide on-the-spot assistance.
TSA will provide families with a no fica on card iden fying the health condi on or disability that will alert screeners that the process
may be a bit different for this traveler.
Contact TSA Cares at 855‐787‐2227 to let them know your travel dates and needs ahead of me!

DSG Pillars Promote Lifelong Learning

DSG recently revamped all of our programming based upon our newly developed Pillars which promote lifelong learning. We
know if our program team focuses on addressing these pillars that we will see be er long term outcomes for our friends with
Down syndrome. We encourage families to also focus on skill development in these six areas as they will help foster independ-
ence and promote greater opportuni es for inclusion at school and in the community. We will have ar cles addressing each pillar
in future issues of connec ons. Our therapy team will outline ways to embed these pillars into your everyday lives and ac vi es
you are already engaging in so your loved one with Down syndrome is learning important skills in contextual se ngs.

Research Study Examines Gaps in Clinical Care for People with DS

Par cipate in research to help close the gaps in health care access! The purpose of the survey
is to iden fy gaps in clinical care for people with Down syndrome and to build a concrete un-
derstanding of how to fill these gaps. No one will be asked to provide their name or the name
of their family member with Down syndrome. This study is being supervised by Dr. Heidi Ber-
ger at Simpson College and Dr. Anne Kohler at Colgate University.
Visit nyurl.com/clinicalgapsds to take the survey!

D.A.D.S

July/August mee ngs not decided at me of publica-
on prin ng. Check dadskc.org or email john-

[email protected] for more informa on.

JOCO FRIENDS

July/August mee ngs not decided at me of pub-
lica on prin ng. Email [email protected] for
more informa on.

CONNECTANDO EASTLAND FRIENDS

AMIGOS LATINOS July/August mee ngs not decided at me of publica-
on prin ng. Email [email protected] for
Tema sera sobre la caminata, se acerca la fecha y hay que
prepararnos. Porfavor de confirmar a Yadira Murguia 913-563 more informa on.
-8951 o a Brenda Quintana 816-278-0219
NORTHLAND BUDDIES

July/August mee ngs not decided at me of publi-
ca on prin ng. Follow Northland Buddies face-
book page for more details on upcoming events.

ST. JOSEPH FRIENDS

NO
events provided at me of publica on. For more informa on
on St. Joseph friends please contact Stephanie Mefford, (816)
262-2827 or email [email protected] You can also follow
the St. Joe facebook group by searching St. Joseph Down Syn-

LAWRENCE/ TOPEKA FLINT HILLS

FRIENDS Flint Hills Families Group Poolapalooza Friday July 19, 2019
Time: 7:15-8:45pm Northview Pool, Manha an KS
Birth – three playgroup for babies with DS on the first Tues. of Contact Brianna Nelson-Goff to RSVP or to learn more infor-
each month from 9:30‐10:30am at TARC in our Children’s Play- ma on about the group at [email protected]
room. Families can come in through the main doors or through
the playground doors. For informa on about LTF Friends DOTTE FRIENDS
please contact Wendy at 785-506-8616 or at toplaw-
[email protected] Bring the family and join us July 25th in Parkville, MO. for
a round of mini golf and ice cream at 7:00 p.m. RSVP to
If you have a teenager with DS be sure to check in with ju- Amy at Do [email protected]
[email protected] as DSG is now hos ng teen events once a month
in Topeka or Lawrence and we’d love to have your teen join us!

My Brother With Down Syndrome Improved My Life

My brother will turn forty, in May. He They embrace their brother and en- normally bring me great frustra on,
has Down syndrome. Having a sibling joy his uniqueness. All through the as I try to control and improve on all I
with special needs has enriched my teenage years, Brian went with his can. But when I’m with my brother, I
life in ways that Easy Street never younger sisters to Youth Group; on am presented with the fortunate op-
could. There are unique challenges mission trips; to camp. We didn’t ex- portunity to lower my unrealis c ex-
that come with this reality and un- pect this, but the girls just did it. In pecta ons and uncover great joy.
paralleled joys as well. And I would- recent years, all three daughters And oh this is good for my try-hard
n’t trade either—both have their have had their brother come to their soul.
place in the development of a well- homes to stay. In one home, he’s the
rounded soul. resident uncle; in the others’ places, The heartbreaks I experience when
he hangs with the singles crowd and Brian is made fun of, make me a
I don’t know how my parents juggled experiences big city life.” more compassionate human, and less
it all, but I don’t remember being machine-like. The unknowns about
resen ul; they supported and loved We had a choice as a family, we his future, cause me to be less an-
each of us individually and as a could try to e up everything in a dy noyed by his quirks and more thank-
whole. My asser ve, a en on- bow and constantly be frustrated, or ful for me spent together. The way
seeking behavior probably was drain- we could face the unknown, togeth- he picks out just the right card to li
ing to my parents, as I now realize er…ge ng stronger as we walked this my spirit, a er five seconds of
how full their plate was, but they winding path as a team. “looking” at the Hallmark store, nev-
graciously and sacrificially invested in er ceases to amaze me.
the four of us. As a first born girl, and recovering
perfec onist, the imperfect and un- Let me assure you, my brother is a
When Brian was born, and in those predictable gi to me. In my brother’s presence, I
early years, my mom was concerned feel freed from the need to measure
about the effect on the rest of the up. I don’t have to impress him (but
family, in having a child with special man, I hate disappoin ng him).
needs. She didn’t want us girls to feel
burdened, deprived, or resen ul. Reprinted with permission from
But looking back, my mom said, “I Ka e Reid. Ka e is an author, speak‐
needn’t have worried; each of the er and singer Visit ka ereid.com to
girls has more than risen to the chal- learn more
lenge.

“WHAT IS MOYAMOYA DISEASE?” many readers may be asking
themselves. This rare disease is significantly more common in
children with Down syndrome. Understanding symptoms and
early detec on could save a life.

It is a rare blood vessel disease caused by blocked arteries in the As a result, many people with moyamoya disease experience
brain. The name “moyamoya” is derived from a Japanese term strokes, just as Erin did. All types of strokes share symptoms such
meaning “puff of smoke,” because the tangle of vessels o en re- as headaches, seizures, visual disturbances, one-sided weakness,
sembles a small puff of smoke. Occurring in approximately 1 out of slurred speech, involuntary movements, and cogni ve impairment.
every 100,000 people, moyamoya disease can be fatal if le undi- Some common strokes that occur with people who have mo-
agnosed and untreated. It is es mated that people with Down syn- yamoya disease are TIAs, ischemic strokes, and hemorrhagic
drome are 26 mes more likely to develop the disease, compared strokes. TIAs occur when blood flow to the brain is interrupted
with the typical popula on. It is important for parents of children briefly but then resumes, which is why they are o en called “mini-
with Down syndrome to know the warning signs and next steps if strokes.” Ischemic strokes occur as a result of a blood clot com-
their child is diagnosed. pletely blocking an artery that supplies the brain with blood. Hem-
orrhagic strokes — major brain bleeds — may occur if blood ves-
Maria Dellapina, from Burton, Ohio, is the founder of the award- sels or collaterals burst.
winning adap ve eyewear company, Specs4Us. Her daughter, Erin
Farragher, happens to have Down syndrome. When Erin was 16 The reason people with or without Down syndrome develop mo-
years old, she began experiencing unusual symptoms of shaking , yamoya disease is unclear. It’s thought that gene cs may play a
fain ng, and muscle aches. “Erin called out to me, I turned around, role, as several muta ons to the gene RNF213 are associated with
and she was shaking all over and fell to the ground,” recalls Del- moyamoya disease. Infec on or inflamma on may also be involved
lapina. Ini ally, Dellapina thought her daughter had experienced a in its development, according to the Na onal Ins tutes of Health
mini-stroke, but Erin bounced back quickly. (NIH).

However, Erin’s symptoms con nued to occur — more headaches, PREVALENCE AND THE IMPORTANCE OF EARLY DETECTION
more muscle aches, and poor balance. In Dellapina’s search for “In the United States, it was thought moyamoya disease occurred
answers, she received an email from a parent, who, based on his in 0.1 per 100,000 people,” says Gary Steinberg, M.D., Ph.D., Chair
experience with his daughter, advised Dellapina to look into mo- of Neurosurgery, Director of the Stanford Moyamoya Center, and
yamoya disease, a term with which she was unfamiliar. Growing Founder and Co-Director of the Stanford Stroke Center. “More
increasingly concerned with Erin’s “off” behavior over the next few recent studies have shown the incidence may be 0.5 or closer to 1
days, Dellapina decided to take Erin to the emergency department per 100,000 because it’s been under-recognized in the U.S.”
at a local hospital. “When I pulled into the parking lot, Erin started
throwing up,” Dellapina recalls. “The physicians thought Erin had While the disease is rare in the general popula on, people with
the flu. They even laughed when I men oned moyamoya.” Down syndrome are 26 mes more likely to develop the disease
than typical people, according to Dr. Sacho. The reasons for that
Not convinced, Dellapina took Erin to another hospital in Cleve- discrepancy are also unclear, though signs seem to point to ge-
land. A CT scan revealed Erin had suffered from a stroke. In fact, it ne cs. He adds that, in Down syndrome, there’s something about
was just one of several strokes and transient ischemic a acks the triplica on of chromosome 21 (the defining characteris c of
(TIAs), also called “mini-strokes,” that Erin had apparently experi- Down syndrome) that predisposes this popula on to moyamoya
enced throughout her young life. Later, at Cleveland Clinic, an MRI disease.
and angiogram led physicians to diagnose Erin with moyamoya
disease. The disease can be more difficult to detect in children with Down
syndrome than typical children, which may explain why, on aver-
LEARNING ABOUT MOYAMOYA age, children with Down syndrome are diagnosed with moyamoya
Any me families receive an unexpected diagnosis, it can be very disease nearly two years later than typical children. According to a
overwhelming and scary. Knowing the facts and what to expect can 2015 study by researchers at Boston Children’s Hospital, children
help ease some of that fear. Moyamoya disease occurs when the with Down syndrome are usually diagnosed at age 8.4 versus 6.5
internal caro d arteries at the front of the neck that supply the for typical children. A delayed diagnosis can allow moyamoya dis-
brain with oxygenated blood gradually narrow, says Raphael ease to progress to a more advanced stage.
Sacho, M.D., F.R.C.S., Assistant Professor of Neurosurgery at the
Medical College of Wisconsin. As those vessels narrow, the two Con nued on next page >>>>>>
vertebral arteries at the back of the neck compensate by develop-
ing small blood vessels called collaterals. This causes a tangling of
blood vessels in the brain, restric ng blood flow.

“Collaterals take over the func on of the internal caro d arteries
over me,” Dr. Sacho explains. “That, in itself, can cause problems
because the collaterals can be small, thin, and not used to taking
so much blood. They can burst and cause bleeding.”

What is Moyamoya Disease….con nued

Today, Madie is back to being ac ve in her community. She is Unfortunately, strokes and TIAs had already significantly damaged

training to become a cer fied Zumba instructor and plans to mar- Erin’s brain by the me she had surgery, which did not succeed in

ry her boyfriend next year. “Madie hasn’t had any symptoms since ending the strokes and seizures. Now 19, she receives hospice

two weeks a er her most recent surgery in October 2018,” says care while Dellapina focuses on giving her the best quality of life

Madie’s mother, Mary Beth Freckmann. “Dr. Sacho [who per- possible.

formed the surgery] really believes this will give

her a very long life.” For 25-year-old Madie Ehlers of Wisconsin, treat-

ment has, so far, been successful. Born with

Dellapina believes an early diagnosis likely Down syndrome, she was diagnosed with mo-

would have made a significant difference for her yamoya disease in late 2013 at age 20. Like Erin,

daughter, who, she now believes, showed signs Madie experienced flee ng stroke-like symptoms

of TIAs as early as age 11. In 2016, Erin under- and was ini ally misdiagnosed. She has had three

went pial synangiosis surgery — the typical surgeries since spring 2014 — two on the le

treatment for moyamoya disease. The proce- side of her brain and one on the right, and her

dure involves surgeons crea ng new blood ves- symptoms have disappeared.

sels to supply the brain. It’s believed these new

blood vessels can do the job be er and have a lower risk of Reprinted with permission from the Global Down Syndrome

burs ng than the collaterals. Once the new vessels are func onal, Founda on. This ar cle originally appeared in a recent issue of

pa ents both with and without Down syndrome enjoy a normal Down Syndrome World Magazine. Learn more about GDSF or

life expectancy, Dr. Steinberg says. “That is why it’s so important their magazine by visi ng: globaldownsyndrome.org

to diagnose and treat promptly,” he says.

Keys to Success Conference August 17th in Columbia Missouri

Parents, educators, therapists, administrators and service providers are invited to join us
for a great day of learning on Saturday August 17th at the Stoney Creek Conference Cen-
ter. Our presenters will cover topics such as behavior, reducing prompt dependency, im-
proving fine motor skills, enhancing speech, communica on and social skills, fostering
independence and the transi on to adulthood.

Our keynote speaker will be self advocated Elijah Mayfield who will share informa on
about his childhood, gradua ng from high school, working and learning to drive a car.
Elijah received the Self-Advocate of the Year award from the Na onal Down Syndrome
Society (NDSS) in Washington D.C. for his ongoing efforts to improve the daily lives of
individuals with Down syndrome.

Registra on opened June 15th. You can download the brochure and register online by
visi ng: kcdsg.org/dsg‐central‐missouri Fees are $55 for one a endee and $100 for two
a endees. Lunch is included with your registra on fee.

How to Write Social Stories

A social story is a simple and effec ve tool for teaching
kids how to do certain things, handle problem behav-
iors, master social skills, and navigate new or unfamil-
iar social situa ons.

Social stories can be wri en about prac cally anything
that your child may be struggling with from problem
behaviors, such as anger or bi ng, to daily living skills,
such as how to brush your teeth or use the po y, to
unfamiliar events, such as how to act at a wedding.

A good social story teaches the child what the ex-
pected behaviors are, as well as the expected respons-
es. It also describes, in detail, what the situa on,
event, or skill requires. Using lots of visuals and famil-
iar language allow the child to create a script in their
heads related to that place, skill or event.

Social stories are wri en for children with disabili es to help 10. Social stories should describe exactly what behavior is ex-
describe an unfamiliar event or situa on or to explain social situ- pected of the child by wri ng direc ve sentences in a posi ve
a ons and expected behaviors. They can also be used to teach manner (i.e., avoid the words "do not" if at all possible.)
rou nes or targeted skills in easy to follow steps. Below are 11. Keep language and vocabulary simple. Avoid metaphors,
some helpful ps when crea ng a social story. idioms, or other abstract concepts.
12. Write the social story from the perspec ve of the child and
1. Make the tle of the social story clear and concise. in present tense. It will help them relate to the story!
2. Only write about one topic per social story.
3. Pictures aid in comprehension and help the child see what If you are trying to teach your child a skill or how to a end a
certain things look like (e.g., picture of a den st chair). specific event or go to a loca on in the community google
4. Use a simple format by limi ng the text on each page search that skill/event and the words social story to find sample
5. Use simple colors, fonts and pictures as much as possible stories you can purchase, print freely or model from!
6. Break down the event/skill into smaller tasks or meline.
7. Include exact scripts or phrases for the child to use
8. Include descrip ve sentences, which answer the WH
ques ons like when, who, what, where, why, and how.
9. Social stories should also describe how the child should feel
or react to the certain event or skill. Example: It is okay for me
to cry at a funeral.

Applied Behavior Analysis Strategies Help Curb Unwanted Behavior

The DSG therapy team is going live! Facebook Live that is! On the likely to give him social a en on when he was smiling (access to
broadcast, 3.21 Live!, the team will be discussing a variety of top- social a en on).
ics including social skills, independence, self-advocacy, and other
topics that are relevant to you and your self-advocate’s daily lives. Your child may clean up his room because in the past you were
You can view 3.21 Live! by liking DSG’s Facebook page and looking likely to give him some of his favorite ice cream a er he cleaned
out for the event invite. his room (access to tangibles).

Broadcasts are scheduled for the last Friday of every month at Your child may suck her thumb when she is red because in the
12:30 PM. You can join the therapy team during the live broad- past it made her body feel calm enough to fall asleep (sensory/
cast to get your ques ons answered in real- me or you can view automa c).
the broadcast a er it occurs. Just simply look on DSG’s Facebook
page and find the post. If you are unable to join the team live, you So next me that your self-advocate engages in a behavior that
can always email ques ons or comments to [email protected]. you do not want to see again, take a step back and try to figure
out what need he is trying to meet. Think about what you need to
Most recently the team discussed applied behavior analysis (ABA) teach him so that he can get his needs met in a more appropriate
strategies that can be implemented in any environment (school, way. Looking at behavior through a func onal lens can o en low-
home, and community) to make your self-advocate more success- er frustra on and help parents see what skills need to be taught.
ful. Before you can implement the strategies discussed, there is For more informa on, go to the DSG Facebook page and view 3.21
some basic ABA terminology that you should know: Live! past broadcasts.

Submi ed by, Megan DeBoom, MS, BCBA, LBA

 Behavior – anything that a person does that is observable and
measurable

 Antecedent – anything that occurs right before a behavior

 Consequence – anything that occurs right a er a behavior

 Reinforcement – a consequence that increases the likelihood
of a behavior occurring again in the future

 Punishment – a consequence that decreases the likelihood of
a behavior occurring again in the future

Keep in mind that reinforcers and punishers are not universal.
What decreases one individual’s behavior may not decrease an-
other individual’s behavior. Reinforcers and punishers may not
always have the effect that you intend for them to have. As an
example, if you give your child a verbal reprimand every me he
hits his sibling, but your child con nues to hit his sibling, your ver-
bal reprimand may be ac ng as a reinforcer instead of a punisher
as you intended.

This brings us to the four func ons of behavior –Escape/avoid,
access to social A en on, access to Tangibles, and Sensory/
automa c. An easy way to remember this: Everybody EATS. All
humans engage in behavior to escape/avoid something, to get
a en on from someone, to get something, or to meet a sensory
need. Humans only behave in ways that work. Let’s look at some
examples:

Your child may cry when it is me to brush her teeth before bed
because in the past you were more likely to let her skip brushing
teeth if she cried (escape/avoid).

Your child may smile at you because in the past, you were more

2019 Kansas City Step Up Walk Incen ves

Your Step Up Walk Team Page & Story $300

All Step Up Walk teams that raise $300 will have their indi-
vidual with Down syndrome life story professionally wri en
for their Step Up walk team and social media pages. The lev-
el also includes a personalized email template, video edi ng
service, copywri ng service to help frame your child’s story,
thank you message and vanity URL. The last day for team’s to
receive this incen ve level is September 25, 2019.

Preferred Parking at the Step Up Walk $750 OFFICIAL KANSAS CITY
WALK LOGO AND SHIRT
All Step Up Walk teams that raise $750 will be awarded
three (3) preferred parking passes for closer access to the Tables & Chairs Ready for You $10,000
event. Preferred parking will be clearly marked in Lots B &
D. This level includes everything listed above. All Step Up Walk teams that raise $10,000 will receive (6) six
foot tables and 36 chairs. Tables and chairs will be set up
Tent Set Up at the Step Up Walk $1,500 under your tent and ready for you the morning of the walk.
This level includes everything listed above
All Step Up Walk teams that raise $1,500 will have their
personal pop up team tent set up and ready when your DSG City Wide Exposure! $15,000 +
team to arrives. Tents will need to be dropped off at DSG
on walk t-shirt pick up day, October 19. This level as in- All Step Up Walk teams that raise $15,000 + will receive city
cludes everything listed above. wide, marquee exposure alongside the DSG brand! DSG will
also host a photo shoot for your individual with Down syn-
Fast Pass for Two $3,000 drome. Professional photos taken will be featured within
DSG printed and online marke ng materials for 2020. This
All Step Up Walk teams that raise $3,000 will receive a Fast includes but is not limited to the following:
Pass wristband for the individual with Down syndrome and a . The Step Up Walk brochure for 2020, DSG annual report, DSG
buddy to have fast access to all of the inflatables and me- website, DSG programming publica ons
chanical rides offered. This level includes everything listed
above . The overall top fundraising team will be represented on
the front of the 2020 Step Up walk brochure

Concierge Service at the Step Up Walk $5,000 . Your team(s) will start/lead the 2019 Step Up Walk

All Step Up Walk teams that raise $5,000 will receive special Top Team Awards:
concierge service. Your Step Up Walk concierge will bring
lunch to your team. Make a posi ve and stress free impact Top fundraising and team with the most registered walker
on your (and your guests) Step Up Walk day experience will s ll receive a vinyl banner, custom printed with your
with your private concierge. No more wai ng in food lines. team name to display proudly during the walk. The banner is
Beverages (water), plates, napkins & utensils will be deliv- yours to keep.
ered by the concierge. Lunch will be served to your tent
between 11:00am- 12:00pm. Your concierge will dispose of Categories include the following:
all trash for your team. This level includes everything listed
above . Top new team (new in 2019) that raises the most money
. Top pre-exis ng team that raises the most money
Professional Tent Set Up at Walk $7,500 . Top new team with the most registered walkers
All Step Up Walk teams that raise $7,500
will get a 20x20 tent for the day. This level . Top pre-exis ng team with the most registered walkers.
includes everything listed above

Thank you DC’s Dance Instruc on and the Yellow
Rose Gala for this generous contribu on!

Host a Dress Down for Down Syndrome Day
to Benefit the Down Syndrome Guild

Do you and your co-workers/friends like
wearing jeans to work? Here is an easy way
to be comfortable all day AND to also help
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Help spread awareness and display the
many gi s and talents of individuals with

17th Annual Tee Up for Down Syndrome Golf Tournament

DSG’s 17th annual golf tournament will be held at Shadow Glen on Monday, September 9, 2019. The tournament will feature
breakfast, shopping in the concept store, lunch on the course, specialty drink holes, hole contests with premium prizes, mee ng
and playing against some of our amazing self advocates with Down syndrome and an a ernoon cocktail recep on as we recognize
the top scoring team. We are currently looking for hole sponsors, bag sponsors, teams and raffle items. Contact ff[email protected]
if you would like more informa on on how to get involved and support this great event.

5960 Dearborn Street Non-Profit Org
Suite 100 U.S. Postage Paid
Mission, Kansas 66202
913-384-4848 Olathe, KS
[email protected] Permit No. 932