DSG July August 2018 Connections

Volume 23 Issue 96 July/August 2018

CONNECTIONS

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

Governor Colyer Visits Is Your Family on the Right Path?
DSG to sign Bill Into Law
Did you know that less than 5% of high school graduates with Down syndrome
DSG lobbied for almost a decade to pass the are going on to college? Did you know that approximately 20% of high school
Federal ABLE Act. We also lobbied to help pass graduates with Down syndrome are going into the workforce. DSG is com-
the KS and MO State ABLE accounts opening. mi ed to changing those sta s cs and improving outcomes for our members.
One of the reasons some parents are re cent
to open ABLE accounts for their son or daugh- DSG is excited to announce that we will be launching poten ally life changing
ter is the Medicaid payback provision. program for school age children with Down syndrome in January 2019. We
have hired two new full me staff members who will help lead the launch of
our Pathways™ program. By registering for Pathways™ families will have ac-
cess to up to 50 hours per year of direct and indirect support from an Occupa-

onal Therapist, Speech Therapist and Board Cer fied Behavior Analyst to
guide skill development, foster independence and improve behavior.

IMPORTANT LAUNCH DATES

Pathways™ brochure mailed September 1
Online applica on opens Sept 15‐Nov 1
Informa onal mee ng October 2
Program start date January 1, 2019

Governor Colyer recently visited our office to Designed for children with Down syndrome ages 4-18, the Pathways™ Program
sing into law HB 2067 which repealed the Medi- will provide families with cri cal tools and resources to increase func onal
caid Payback provision for Kansans with ABLE adap ve skills, develop a vision for the future and set the stage for success
accounts. This is great news as it provides more beyond high school. Targeted interven ons and support will be provided
opportuni es for families to open and contrib- throughout the year by our highly skilled interdisciplinary team.
ute to ABLE accounts with confidence.
Space is limited to 50 families for the Pathways™ Program inaugural year of
service. Stay tuned and complete online applica on ASAP to be
considered for this program.

There are moments in life that you will always
remember, moments that have a profound
effect on your life. First kiss, driving your first
car, winning or losing a big game, gradua on,
losing a loved one, your wedding day, the
birth of a child, all leave a las ng impression
on us and shape us into the people we are.

I will always remember the day that my wife, Maura and I received our son Charlie’s prena-
tal diagnosis of Trisomy 21. U er shock. I remember thinking, “That could never happen to
us.” All of my dreams for Charlie’s future went up in smoke. We cried a er we received the
phone call. We were devastated for probably over a week.

Then something happened a er we started to tell family and friends about Charlie’s prena-
tal diagnosis. We were shocked by how many people we knew that have friends, cowork-
ers, acquaintances, etc. that are somehow involved in with the DS community. Our next
ins nct was to meet as many of these families as we could within the community and to
meet with the DSG.

Jo Ann Butaud Maura is a nurse and had the good fortune of working in the Opera ng Room at Children’s
Shawnee, KS Mercy Hospital. She was able to help many children with DS in various opera ons, so she
had a much be er grasp of DS than I did. I had outdated, preconceived no ons of what life
Mike Frazier with Down Syndrome was like. Is there a DS func onality spectrum similar to Au sm? Will
Overland Park, KS Charlie be able to a end the same school as his older brother, Chase? Will he need to live
with us as an adult? I know, embarrassing. That quickly changed as soon as we started to
John Melvin meet so many awesome families and incredible kids within the community!!
Overland Park, KS
I think I was most surprised by how normal every family’s lives were and how happy they
Joe Roos were. Each of these families was given the gi of having their lives brightened everyday by
Parkville, MO these excep onal children. Every parent I spoke with talked about how much compassion
their child with DS taught them and the siblings.
Chris Sorenson
Prairie Village, KS Fast forward a few months and we got to meet our perfect, Charlie for the first me! He
cried like a typical baby, slept like a typical baby, and ate like a typical baby. He spent a li le
Tom Wagstaff extra me in the hospital for the first month, but other than that everything was close to
Mission Hills, KS the same as it was for our first son.

Connec ons is a bi-monthly publica on of The last 15 months have been a blast! Charlie has some delays, but that means we get to
the Down Syndrome Guild of Greater Kan- enjoy the milestone moments so much longer than we did with his older brother! Charlie
sas City. Please contact the office at (913) and Chase get along famously and love to play catch together. Charlie is automa cally the
384-4848 if you have any ques ons about life of the party wherever we go (must get that from his mother), people absolutely fall in
the contents of this newsle er or would love with him. I love that our perfect son can brighten people’s days as much as he does on
like to contribute an ar cle. a daily basis.

Disclaimer: The informa on provided is done so I have grown so much as a husband, father and person over the last 18 months thanks to
through a variety of sources including names pro- Charlie and everyone we have met through the Down Syndrome Guild. I look forward to
vided by members of DSG, networking, referrals by con nuing to grow and mee ng more families and advoca ng for the Down syndrome com-
professionals, other agencies, mail adver sements, munity!
etc. DSG cannot a est to the quality or qualifica-
Submi ed by, Jeff Anderson: proud father of Charlie and Chase Anderson, lucky husband
ons of the individuals or organiza ons described. of Maura Anderson
We encourage you to be a wise consumer and ask
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 any type of endorse-
ment.

Learning Program Scholarships

DSG is partnering with the Down Syndrome Founda on of Orange County for an
online learning community based on The Learning Program™ which serves as a
pla orm for sharing strategies, resources and ac vi es to improve academic
outcomes for students with Down syndrome. LP Online™ equips par cipants
with the knowledge and tools to work effec vely with students with Down syn-
drome, and other students with visual learning strengths, in home and school
se ngs.

LP Online™ consists of ten online class presenta ons (live and on-demand), instruc onal handouts, downloadable re-
sources and ac vi es, demonstra on videos and opportuni es to reflect on topics and interact with other par cipants. LP
Online™ sessions support development of reading, comprehension and math skills, and address general topics related to
accessing curriculum, fostering independence, placement op ons, working with school teams and memory.

DSG is funding 40 scholarships to the online learning program classes. Complete the DSG online scholarship applica on by visi ng
nyurl.com/2018LPScholarship by August 1st. You will be no fied of your applicant status by August 5th and classes begin in Sep-

tember. When you apply for a scholarship you are agreeing to a end all 10 classes and work with your child on the program at least
10 hours per month using Learning Program™ materials.

Allen Crocker Educa on Series Helps Parents and Professionals

Dr. Crocker was a developmental pediatri- Dr. Allen Crocker the public. Topics include: medical up-
cian who worked at Children's Hospital dates, school and community issues, fu-
Boston for over 60 years. He was par cu- ture planning, prenatal diagnosis, skill
larly passionate about serving his pa ents development and more.
with Down syndrome. The Allen C. Crock-
er Speaker Series, named in his honor, is The talks are created to provide infor-
designed to provide quality informa on ma on for families but are also relevant
from experts on a range of topics related to providers and other community mem-
to Down syndrome. bers.

The talks are presented monthly at Bos- View archived talks online by visi ng:
ton Children’s Hospital and are open to nyurl.com/allencrockerseries

Create an online profile to help improve research fund-
ing and to be no fied about upcoming clinical trials

EASTLAND FRIENDS

We are taking the summer off! Be sure to stay connected to
DSG families by visi ng the DSG Discussion Forum on Face-
book.

Hope to see everyone at the DSG Family Day at Weston Red
Barn Farm on Sunday, September 9th. More details to follow.
For more informa on or to RSVP for events contact Laura at
[email protected]

CONNECTANDO

AMIGOS LATINOS FLINT HILLS

Proxima reunion, Julio dia 20, a las 6:00 pm recibiremos con Flint Hills DS Families pool party! Friday July 13, 2018 at North-
gusto al Dr. Cowden y Dra. Page Pomo en las oficinas de Down view Pool (510 Griffith Dr, Manha an, KS 66502) 7:15-9:30pm
Syndrome Guild para dar una plá ca sobre infecciones -
(diferencias entre las bacterias y los virus). Si esta interesado The pool is reserved for our group only during that me, so
por favor de confirmar antes del dia Julio 13 al numero 913- bring your whole family, extended family, friends, etc. Will
563-8951 Yadira Murguia o 816- 278-0219 Brenda Quintana, be a great me! (and probably hot!) All expenses (pool fees)
gracias paid by KC Down Syndrome Guild.

D.A.D.S Bring your own snacks and drinks—or bring some to share
and we will do “potluck” snacks RSVP to Brianna at bnel-
Texas Hold Em Tournament at the DSG office on Thursday, July [email protected]
19 at 6:30pm. Join fellow D.A.D.S members from around the KC
area for Texas Hold’em. Winner gets a $50 Visa gi card. Never
played Texas Hold’em Poker? Come anyway and we will teach
you. Joe’s Kansas City (formerly Oklahoma Joes) BBQ included.
DSG will provide Joes KC BBQ.

In August we will be hos ng a family picnic. More details to
follow! RSVP for DADS ac vi es to [email protected]

DOTTE FRIENDS JOCO FRIENDS

We are taking the summer off! Be sure to stay connected to March 4th Mom’s Night Out 3-6 PM join us at Stone Pillar Win-
DSG families by visi ng the DSG Discussion Forum on Face- ery in Olathe for a cork cra and wine tas ng. Full cost is $30
book. Hope to see everyone at the DSG Family Day at Weston person. DSG will pay $10 per mom.
Red Barn Farm on Sunday, September 9th. More details to fol-
low. Ques ons about DOTTE friends? Please contact Amy Lip- Aimee at [email protected] or Emily at [email protected]
nicky at 913-558-6078 or Do [email protected].

LAWRENCE/ TOPEKA RURAL MISSOURI

FRIENDS FRIENDS

The annual LTF family picnic will be held on 8-19-18 at Gage Park in We encourage families to nominate a World Down Syn-
the Westlake Shelter House from 11:30am – 2:00pm. This is the drome Day community champion by February 20th by vis-
same loca on that we held the picnic at last year. DSG will supply i ng kcdsg.org For more informa on about the group and
sandwiches, fixings and dessert and families should bring a side upcoming events please contact:
dish to share with all. [email protected]

Please let us know at me of RSVP if anyone needs gluten free
bread. RSVP for events to [email protected] or call (785)
506-8616

MID‐MO FRIENDS

Swimming Party at Liberty Park 1700 W. 3rd St. Sedalia Friday, July ST. JOSEPH FRIENDS
27th. 7:30-9 pm Please rsvp by Tuesday 24th so we can plan the
correct number of lifeguards. Join us Friday, July 13, 7 pm at the Saint Joseph Mustangs
game. Wild Cats cheerleaders (Special Olympics) will be
Bring your own drink and snacks. They will not be provided this me performing prior to the game. Contact Stephanie Mefford
Email Jill at [email protected] to RSVP of for more for ckets for your immediate family, 816-262-2827 or
informa on. This group serves Sedalia, Warrensburg, Whiteman [email protected]. Deadline for ckets, July 9. This
AFB and the surrounding areas. event is funded by DSG.

NORTHLAND BUDDIES RSVP to Stephanie Mefford, (816) 262-2827 or email
[email protected]
Bring the whole family to Springs Aqua c Center on SATURDAY,
July 28th any me between 11 am-8 pm. Please RSVP with number
of adults and children to [email protected].

The rest of our year is almost planned so stay tuned for more de-
tails coming soon! Hope to see everyone at the DSG Family Day at
Weston Red Barn Farm on Sunday, September 9th.

PEOPLE OF COLOR

Contact Morcie Whitley at 816-392-6558 for more informa on
on future ac vi es our community group will be hos ng. We’d
love to see your family at a future event!

TRI‐21

Tri-21 serves the Grandview Triangle, Raymore, Harrison-
ville area. We are currently seeking new volunteer leaders
to facilitate this group. Please contact Amy Allison at
[email protected] if you are interested in learning more
about managing this community group.

DSG College Scholarships for Students with Down Syndrome

DSG knows how fast college expenses can add up for students and their families! We are
going to award five lucky students with Down syndrome a $500 scholarship to help de-
fray expenses related to tui on, books, housing or meal plans. Kansas and Missouri resi-
dents with Down syndrome who are DSG members are eligible to apply for a scholarship.
Applicants must be enrolled in a post secondary program and complete the applica on
by August 10th.

Applicants will be no fied of their status by August 15th and scholarship funds will be
sent to recipients by August 30th to pay for fall expenses. Recipients will be asked to
share a few quotes and feedback on their college experiences for a future issue of Con-
nec ons. Apply for a scholarship online here: nyurl.com/dsgcollegefund

DSG Member Joins Cross First Bank as Mailroom Specialist

In the Spring, CrossFirst Bank approached DSG with the idea to hire an individual with Down syn- Grace dressed for
drome to help them with their mail. They have a new corporate office in Leawood, KS. The brand new success on her first
space was a blank slate to allow for an individual to come in and make the job their own. Grace
Walline, who resides in Leawood and had been looking for employment, seemed to be a perfect fit. day at the bank!
She was interviewed by CrossFirst, trained, and hired for the posi on.

Grace has not only dressed to impress with her stylish ou its, she excels at the posi on with her or-
ganiza onal skills and a en on to detail. CrossFirst Bank employees have commented on how they
“needed her organiza on skills in the mail room and enjoy seeing her smiling face each day as she
delivers the mail.” Grace’s job du es include collec ng outgoing mail from three different floors in the
building, sor ng the incoming mail and delivering it to individuals via her mail cart, and pu ng post-
age on outgoing mail via the postage machine.

Grace states that she “loves the independence” she has with the job. Grace has her own office to
work in and now, only a week into the job, is doing things completely independent. She has already
been invited to staff get-togethers, has good friends in the office, and enjoys being at work.

CrossFirst Bank knows how to be an inclusive workplace. DSG is pleased to learn that they are willing
to go above and beyond to support Grace and help her develop professionally. We look forward to
hearing more about Grace’s success at CrossFirst.

iCan Communicate Classes Teach Cri cal Skills to Teens

Many DSG teens have par cipated in the iCan Communicate classes to enhance their social communica on skills. These classes
focus on several fundamental skills such as gree ngs, saluta ons, eye contact, body language, reading emo ons, and conversa onal
turn taking. Each session lasts one and a half hours and builds upon the last. The most unique aspect of these classes is that each
student is assigned a peer communicator. As the Speech Pathologist teaches the lesson, the peers are facilita ng the lessons with
the students. This brings the lessons to life and helps to generalize them to everyday ac vi es.

Through the last 10 weeks, we have seen tremendous growth in all of the students. We have seen students who once sat quietly in
the back of the room begin to introduce themselves to new people. Students are listening to others and looking them in the eye.
Students are asking appropriate ques ons and stay on topic when talking with peers. But most importantly, we have seen the confi-
dence grow in each student as they realize that they can express their thoughts and use their voice to express themselves!



NEW to DSG Lending Library—‐Hello, My Name is Ken

A life lived, a journey taken, an ending no one like that his whole life. For me this was a heart- Purchase online at
could believe. breaking eye-opener, promp ng me to tell the Amazon.com or contact
world just how amazing my big brother was. DSG to check the book
Ken had Down Syndrome, and as he aged he
developed Alzheimer's. He was only 48. The It also became clear that there were gaps be- out from our library.
gene cs that caused his Down syndrome also tween what Ken needed for care, and what was
predisposed him to this disease. available. My hope is that his story will inspire
the changes we need in our healthcare systems
He lived a life full of love, compassion, accom- and other organiza ons to provide the level of
plishments, challenges and victories. Like most care, empathy, love and understanding re-
people with Downs, he brought more love into quired for those aging with Down Syndrome.
this world than many of us will ever achieve.
Within the pages of this book are some of the People with Downs are valuable members of
wonderful stories of his life. Each one a glimpse our society who contribute in incredible ways.
into who he was, each one ending with how Not all will develop Alzheimer's, but Down Syn-
Alzheimer's took that away. drome adults with Alzheimer's will become
more common as they too are living longer. We
So many people who met Ken a er Alzheimer's need to understand what that looks like and
had taken hold, assumed he must have been how to help them.

Come join us for a week long summer day camp, led by UMKC Music Therapy Clinic Therapists! The week long
camp is goal oriented focusing on the following areas: increasing socializa on and joint a en on, fostering crea-

vity and explora on while promo ng developmental and pre-academic play skills through music. We specialize
in working with children with special needs including Au sm, Sensory Processing Disorder, ADD/ADHD, develop-
mental delays, Down syndrome, behavior disorders/needs and other diagnoses. This camp will meet from 9 AM-
12 PM and costs $160 per student, per session.

DSG Welcomes Two New Team Members

Sarah Mai has a Master’s degree in Occupa onal Therapy and is joining the DSG team as our Director of
Family Services. Sarah has worked with families with children with developmental disabili es as an occupa-

onal therapist and advocate for 15 years, with experience serving individuals with Down syndrome from
two to fi y years of age. Sarah recently completed 4 years as the Execu ve Director of The Mission Project.
She was a school-based Occupa onal Therapist at Park Hill School District for a decade, where her prac ce
had a strong emphasis on assessment, early interven on, assis ve technology, sensory processing, behavior
management, and feeding. Sarah has had consistent goals in her career: to maximize the independence of
children and adults with disabili es, equip and educate families, and create evidence-based programs that
improve overall quality of life.

Betsy Sylvester, MS, CCC-SLP, is a Speech Language Pathologist. She received her Bachelor’s degree in
Fine Arts in Theatre from Baylor University and her Master’s of Science in Communica on Disorders from
Central Missouri State University. She has prac ced for 13 years with a variety of students including Deaf/
Hard of Hearing, Apraxia, and Down syndrome. Betsy has worked in mul ple se ngs including schools
and private prac ce. She is excited to join the DSG as the Director of Speech and Language Services. She
looks forward to building rela onships with families to enhance the communica on skills of individuals
with Down syndrome.

TIME Act Could Remove Barriers to Employment

The Transi oning to Integrated and Mean- wage as an incen ve to persuade employ-  Even though some employers claim to
ingful Employment (TIME) Act, officially ers to hire them. This provision remains in provide rehabilita on and training to
recognized as HR 1377, is bipar san legis- effect today and many workers earning workers with disabili es to prepare
la on introduced to remove a significant sub-minimum wages are employed in seg- them for compe ve employment,
barrier to employment opportuni es for regated workplaces. the ability to pay less than the federal
individuals with disabili es. minimum wage incen vizes said em-
Key Asser ons of the “TIME Act” ployers to exploit the cheap labor pro-
This legisla on would phase out 14(c) spe- vided by workers with disabili es.
cial wage cer ficates over a six-year period  The prac ce of paying workers with
that allows employers to pay individuals disabili es less than the federal mini-  Many employers with a history of pay-
with disabili es sub-minimum wages. In mum wage is an outdated provision ing special minimum wage benefit
2016, nearly 250,000 Americans with disa- that harkens back to a me when from philanthropic dona ons and pre-
bili es were legally paid, on average, less there were no employment opportu- ferred bidding status on federal con-
than $2 an hour. Some received as li le as ni es for individuals with disabili es. tracts, yet claim unsustainability of
30 cents an hour. workforce and profitability should
 Advancements in voca on rehabilita- they be required to pay federal mini-
Down syndrome organiza ons across the on, technology and training provide mum wage.
country are suppor ng this legisla on. It
was introduced in the U.S. House of Repre- workers with disabili es greater op-  That via the rules established under
senta ves by Congressman Gregg Harper portuni es than in the past. Sec on 14(c) of the FLSA, employers
(R-MS). It will help pave the way for equali- determine the special wage to be paid
ty in the workplace for people with cogni-  Employees with disabili es who are to an employee with disabili es
provided with proper rehabilita on through a complicated methodology
ve delays and other disabili es. Many of services, training and tools can be as that unfairly establishes a produc vity
them work in se ngs that fail to prepare produc ve as employees without disa- benchmark difficult for anyone to
them for integrated employment in the bili es. maintain. Furthermore, that the ina-
mainstream economy. bility of many employers to correctly
establish the wage pursuant to the
Despite the Americans with Disabili es Act rule has regularly resulted in employ-
and other laws to protect workers with ees with disabili es receiving even
disabili es, many struggle to find and keep less than the special minimum wage
jobs that pay a living wage. When the Fair than they should have received under
Labor Standards Act was passed, it includ- the regula on.
ed a provision to allow people with disabil-
i es to be paid less than the minimum

Link Between Sleep, Learning and People with Down Syndrome

It wasn’t long ago that dad’s snoring was a family joke. New I’m glad I didn’t wait to take Troy in for a sleep study. At 2-years
research is now showing that sleep problems can lead to seri- -old he had moderate sleep apnea. Troy got his adenoids and
ous issues, especially for our loved ones with Down syndrome. tonsils removed, which was enough to resolve his sleep apnea.
At almost 5-years-old he’s speech has taken off despite his
Evie is only 5-years-old, and already she’s experienced 7 sleep Apraxia diagnosis, although I’ll never know if that’s because we
studies “Her first was at 11 months because they were trying to were so proac ve in trea ng his OSA.
rule out pulmonary pressure issues before doing heart surgery.
She had mild apnea then,” says Evie’s mom Jen Alge. This amaz- Parents should con nue monitoring sleep issues even into
ing preschooler, who happens to rock an extra chromosome, adulthood. “One age group that’s not being studied is adults,”
was found to develop severe obstruc-
says Edgin. “OSA and other sleep issues
ve sleep apnea (OSA) in a follow-up has been shown to lead Alzheimers and
sleep study. cogni ve declined in typical adults. The
same is likely true for adults with Down
Surgery to remove her adenoids and syndrome. Although they may suffer
tonsils brought down Evie’s OSA levels these declines earlier than their typical
to a more moderate range. “A simi MRI peers.”
(which I highly recommend) showed
how obstructed her airway is, so we Edgin recommends that individuals with
started Evie on a CPAP (Con nuous Pos- Down syndrome repeat sleep studies
i ve Airway Pressure),” describes periodically throughout their lifespan.
Alge. Evie’s mom is a disability advocate “As people age and put on more weight
friend of mine, so I’ve heard her talk it can reoccur. Parents need to stay vigi-
about their countless sleepless nights. “She does wear it on lante as they age,” explains Edgin. Talk to your child’s doctor
average 7 hours a night, but that’s only because I’m in her and decide on a course of treatment that’s best. Not every
room 5-8 mes a night at least pu ng the mask back on.” treatment is meant for every child.

Research out of the University of Arizona links Obstruc ve For our family, surgical removal of aenoids and tonsils was
Sleep Apnea to cogni ve problems. “Addressing sleep disrup- enough to resolve Troy’s OSA for now. Evie’s mom, Jen, says
she hasn’t seen any difference in her daughter’s language and
ons may be an overlooked way to improve cogni ve out-
comes in the Down syndrome popula- behavioral outcomes a er using the
CPAP, but she s ll thinks the treat-
on,” says Dr. Jamie Edgin, lead research- ment has been worth it. “Evie’s always
er and professor of Psychology and Cog- been a smarty pants and she talks all
ni ve Science. The study found that indi- day long so I can’t credit the CPAP for
viduals with Down syndrome with OSA any changes there. I will say she is
had cogni ve, memory, language, and ge ng more air and isn’t gasping for
behavioral issues. breath or snoring with the CPAP on so
Edgin’s study of school aged kids found that’s a relief. The behavior changes
those with untreated OSA had a poor might be more long term given her
ability to learn new rules, and a 9-point age,” explains Jen Alge.
difference in verbal IQ scores compared
to their peers with Down syndrome with- Remember sleep is likely just one piece of the puzzle when it
out OSA. “A more recent study with pre- comes to cogni ve, language and behavioral issues. “Sleep is-
schoolers with Down syndrome found that those with OSA had sues alone do not fully explain the extent of language disrup-
fewer words and may limit how well they learn to communi-
cate,” explains Edgin. on in individuals with Down syndrome. We found that the
good sleep group with DS was also impaired in these areas in
It’s es mated that 50-100% of individuals with Down syndrome rela on to their typical peers,” explains Edgin.
have Obstruc ve Sleep Apnea (OSA), and most parents can’t
predict whether or not their child has it. This is true in our case. “It’s important to understand the link between sleep and learn-
I had no suspicion that my son, Troy, had OSA, but took him in ing problems, but it’s not the only thing people need to keep in
for a sleep study at 2-years-old anyway a er reading Edgin’s mind. In the end, language interven ons may be more benefi-
research. cial if done in conjunc on with sleep interven ons,” argues
Edgin.
The American Academy of Pediatrics recently lowered their
recommended age for comple ng a sleep study for children Originally published by Courtney Hansen at inclusionevolu-
with Down syndrome from 8-years-old to 4-years-old. “The on.com
earlier we detect the sleep problems the be er. There’s a push
in the medical community to decide how early and I argue it
should be earlier than 4-years-old,” explains Edgin. “A study out
of Indiana found that babies as young as 6-months-old showed
divergent sleep pa erns.”



NIH Funding for Down Syndrome Research Increased 65%

A er two decades of decreased or flat funding for Down syn- science, there are now many novel and exci ng research advanc-
drome research by the Na onal Ins tutes of Health (NIH), Con- es that can be applied to Down syndrome, including late-stage
gress has increased funding a whopping 65% for FY2017; from Alzheimer's drug candidates, gene therapies, digital medicines
$35 million to $58 million. and gene c and other techniques that can lead to a be er un-
derstanding of the underlying condi ons in Down syndrome."
House Labor and Health and Human Services Appropria ons
Subcommi ee Chair Tom Cole (R-OK), recently announced the Dr. Espinosa was elated by the news of increased NIH funding for
Fed's financial commitment. He said it was approved following a Down syndrome research. “This is a game-changer for so many
groundswell of bipar san support and lobbying by self-advocates scien sts eager to help people with Down syndrome and fasci-
and their family members. Cole said Dr. Francis Collins, the di- nated by the compelling science,” said Espinosa. “By understand-
rector of NIH, and his teams "have already begun the trans-NIH ing trisomy 21, we stand to improve the lives of millions of peo-
Down syndrome research ini a ve to address this incredibly ple with Down syndrome and hundreds of millions more with
challenging, but incredibly promising science." Alzheimer’s disease, cancer, and autoimmune disorders. We are
deeply grateful to Congress and the leadership at NIH.”
Despite being the most frequent cause of developmental delay
in the United States and the world, Down syndrome has been
one of the least funded gene c condi ons by the NIH in the last
20 years. Leading the grassroots advocacy were the Global Down
Syndrome Founda on and the Na onal Down Syndrome Foun-
da on.

Hampus Hillerstrom, from LuMind Research Down Syndrome
Founda on, said, "This addi onal NIH funding comes at a me
where the status of research has never been more promising:
the efforts of hundreds of researchers...are uncovering promis-
ing therapeu c targets. Also, based on the overall progress of

DSG App Coming Soon!

DSG is partnering with Mobile Up to of your finger ps. We will be hos ng a
launch a new organiza onal app this few contests to promote early adop on
summer. We know many of our mem- of the app so watch social media and
bers are spending more me on their download the app for a chance to win
phones and less in front of computers or cool prizes and to be up to date on the
ipads and we are excited to remain rele- latest and greatest happenings at the
vant and accessible to our members. DSG.

Once the app is ready, you will be able to The DSG app will be available for all An-
make a profile, receive updates on droid and Apple iOS devices. More infor-
events, get up-to-date educa onal infor- ma on will be announced in the upcom-
ma on, learn how to get involved, and ing weeks. Staying involved with DSG has
making a dona on will all be at the touch never been easier!

John’s Crazy Socks Make a Presiden al Impact

John Cronin is a 22-year-old man with Down syndrome who has loved crazy socks his en re life. In the fall of 2016, he asked his
Dad if they could open a business selling socks. His father Mark agreed and the two set to work. In December 2016, John’s Crazy
Socks was born. John and Dad set out not only to sell socks, but to show what people with intellectual disabili es can do. And they
built a business that Gives Back by raising money for chari es like the Special Olympics and the Na onal Down Syndrome Society.

John sent a box of socks to President Bush’s office in Houston. In March of this year, President Bush’s Office called looking for
some more socks. John was only happy to send another box of socks. “I sent him Down Syndrome Super Hero Socks because I de-
signed them and thought President Bush would like them.” Soon a er, John received a special package in the mail.

Dear John, Thank you so much for the generous gi . I am happy to see that you and I have the same taste in
fun, colorful socks…We knew that people with disabili es like Down syndrome are capable of doing amazing
things if they are given the opportunity. You are a wonderful example of what Americans can do despite the
challenges that they face. We are proud of all that you have accomplished.” President George HW Bush

“I loved it,” said John. “I couldn’t believe that I got a le er from President Bush.” President Bush also wore
John’s Crazy Socks to his wife’s funeral last month. It’s clear he is a great customer and believer in John’s prod-
ucts! johnscrazysocks.com

Can’t join us for focus group? Provide feedback online: tinyurl.com/dsgadultsurvey

COMMUNITY SUPPORT FOR DSG

Area Kentucky Friend Chicken Restaurants partnered with the DSG on coupon book
sales at the register this Spring. Customers were encouraged to pay $1 for a coupon
book which had $40 worth of savings. All 49 KFC stores in the Greater Kansas City
and St. Joe areas par cipated and KBP Foods presented a check for $22,105 to the
DSG to support our vital programs and services.

The KFC promo on will be back in the stores August 27-September 30. Watch for
our eblasts, social media posts and get out there and take your family and friends
out for some great chicken for a great cause! Thank you for suppor ng DSG.

Northland Elks Fund DSG Baby Baskets

Northland Elks Lodge 2376 recently provided a $2,000 grant to the DSG
to help fund our new parent welcome baskets. This lodge has supported
DSG for the past several years as they host a breakfast each fall raising
money for Ge ng Goin with Lauren’s walk team.

Brian Moore is a long me member and leader at the Elks Lodge. He is
also proud grandpa to Lauren and he loves helping raise awareness and
funds for the DSG. Elks members came to the DSG office and helped
pack up a few baskets and our shelves are now well stocked and we are
ready to welcome new babies in style!

2018 Step Up for Down Syndrome Walk Team Incen ves

A. Pick Your Tent Loca on at the Step Up ready when your team to arrives. Tents to E. Concierge Service at the Step Up Walk
Walk $500 Teams that raise $500 will be be dropped off at DSG on walk t-shirt pick $5,000 Teams that raise $5,000 will re-
able to reserve the spot where their per- up day, October 13. This level as includes ceive special concierge service. Your Step
sonal 10x10 pop up tent will be placed. everything listed above. Up Walk concierge will bring lunch to your
The team captain or a designated member team. Make a posi ve and stress free im-
of your team will be responsible for D. Fast Pass for Two $3,000 Teams that pact on your (and your guests) Step Up
se ng up the team tent. DSG will send a raise $3,000 will receive a Fast Pass wrist- Walk day experience with your private
link to the team captain so you can re- band for the individual with Down syn- concierge. No more wai ng in food lines.
serve your spot (parking lot row and stall). drome and a buddy to have fast access to Beverages (water), plates, napkins & uten-
all of the inflatables and mechanical rides sils will be delivered by the concierge.
B. Preferred Parking at the Step Up Walk offered. This level includes everything Lunch will arrive to your tent between
$750 Teams that raise $750 will be listed above 11:00am-12:00pm. Your concierge will
awarded three (3) preferred parking pass- dispose of all trash for your team. This
es for closer access to the event. Preferred level includes everything listed above
parking will be clearly marked in Lots B &
D. This level includes everything listed F. Professional Tent Set Up at the Step Up
above. Walk $7,500 Teams that raise $7,500 will
get a 20x20 tent for the day. This level
C. Tent Set Up at the Step Up Walk includes everything listed above
$1,500 Teams that raise $1,500 will have
their personal 10x10 team tent set up and

Thank You for Your Support!

High School
Football Fundraiser

Get your local high school involved in the DSG’s High
School football fundraiser. Players raise pledges based
on the number of first downs a team scores in each
game/season (or seek flat dona ons). Half the funds
raised stay at the school to help the football team and
the other half go to Down Syndrome Guild.

The program is designed to create awareness and pro- Host a Dress Down for Down Syndrome Day
vide addi onal resources to benefit individuals with to Benefit the Down Syndrome Guild
Down syndrome. while also raising money for the foot-
ball teams. We would like every high school in the Do you and your co-workers/friends like
greater KC Metro area to consider par cipa ng. Call the wearing jeans to work? Here is an easy way
Down Syndrome Guild office at 913-722-2499 for more to be comfortable all day AND to also help
informa on on how you can get your school involved. those with Down syndrome. Help spread
awareness and display the many gi s and
talents of individuals with Down syndrome
by hos ng a Dress Down Day! Call the DSG
at 913-384-4848 for more informa on.

16th Annual Tee Up for Down Syndrome Golf Tournament September 10, 2018

The Down Syndrome Guild will hold our 16th Annual Tee Up for Down Syndrome Golf Tournament, at Shadow Glen on Monday,
September 10, 2018. The tournament will feature breakfast for all golfers, shopping in the concept store, lunch on the course, spe-
cialty drink holes, hole contests with premium prizes, mee ng and playing against our self-advocates, and an a ernoon cocktail
recep on.

We are currently looking for hole sponsors, bag sponsors, teams and raffle items. Contact [email protected] if you would like more
informa on on how to get involved and support the golf tournament.

Non-Profit Org
U.S. Postage Paid

Olathe, KS
Permit No. 932

5960 Dearborn Street
Suite 100
Mission, Kansas 66202
913-384-4848
[email protected]