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Para una version en Español, consulte nuestra pagina web www.dsagc.com
A Letter from Executive Director, Jim Hudson
I’m often amazed that some of the most powerful programming initiatives start as small ideas with big heart. Joanie
Elfers started working at the DSAGC in June of 2014 as our School Age Matters Coordinator. That fall when we
were doing some programming planning for 2015, she said that her sister, Debbie Schroeder, wanted to do a
cheerleading clinic for kids with Down syndrome. You see, Debbie had been a Bengals cheerleader at one point in
her life and she has a daughter, Payton, who has Down syndrome. She had always dreamed about bringing those
two passions in her life together.
At the time, I think Joanie and Debbie thought this would simply be a fun activity for a few nights to get kids moving
with great music and dancing. At the end of one of the practices, one of the kids (Ela Tuzun), asked “When’s my
game?” This sparked an idea in Debbie so, for 2016, she reached out to some cheerleading coaches she knew at
two high schools and asked if they would consider having the kids from the clinic come to one of their games and
perform a halftime dance/cheer with their basketball cheerleaders. In the winter of 2016, the kids performed at
LaSalle and Turpin High Schools and both times the energy and joy in those gyms was magical. The DSAGC kids
loved being center court, but another powerful byproduct emerged – we created a highly impactful inclusion
opportunity for those high school cheerleaders. And the crowds erupted and gave our kids standing ovations!
In 2017, Debbie lined up seven area schools to participate. One of the school’s cheerleaders even came to the first
practice at our office to help the kids learn their dance. Debbie also found official cheerleading uniforms and, with the
help of Payton’s grandmas, they put really cute DSAGC logos on the uniforms. Each time the kids performed, a very
positive message of who the DSAGC is and those we celebrate was organically being spread throughout the city.
This simple idea to do a few fun cheerleading clinics was never a part of our strategic plan outreach efforts yet,
heading into 2018, the DSAGC Cheerleading Team has 21 participants and will be performing for the Special
Olympics and at nine high schools throughout
Greater Cincinnati. The icing on the cake is that
this year’s team will be performing at Xavier
University’s Women’s Basketball halftime at the
Cintas Center on Sunday, January 7th at 2:00
pm.
Guarantees are tricky, but I guarantee that if you
want a joy-filled experience one day this winter,
you should come out to any of the games listed
in this in DS Press and cheer on our
cheerleaders. Thanks Debbie for coming up
with a simple idea that has had more positive
ripple effects beyond what we could have ever
imagined!
With Appreciation,
A Letter from Board President, Dave Eberly
Do you think human beings are tribal? I am not sure that is the right
word – tribal, but I think you know what I mean. I think we are tribal. I
think we are wired to support our “team”, to protect our own, to defend
our group. I think it is true in many walks of life: politics, sports, culture,
religion, ethnicity, etc. I know I am this way, personally – if I meet a
Pittsburgh Steelers fan, well, let’s just say I tend to think of him as guilty
until proven innocent, rather than the other way around.
You are of course wondering what in the world this has to do with the
DS Press or the DSAGC, I am sure. I bring this up because I recently
had the privilege and pleasure of attending the New Parent Breakfast
the DSAGC hosts every year. I truly love that event for all of the
reasons you’d expect – it is great to see new families interact with each
other, with the DSAGC, etc.
There is another reason I love the New Parent Breakfast in particular, and it is because I remember being in those
new parents’ shoes. My wife and I have a sort of long-standing, running joke between us – when we first had
Samantha, and we’d see or talk about another family with Down syndrome, we used to say that they were part of
“The Club.” At first, I confess, we used the term a little ironically as not many people choose to join this exclusive
Club willingly. We don’t even remember applying, quite frankly.
But a funny thing has happened over the years. We still refer to our friends being in The Club, but we do it without
irony. Being part of The Club – the DSAGC community – is a term of pride and joy. We may not have applied to
be in The Club, but in part because of the DSAGC and the bonds we have forged with our friends, we are happy
we’re members.
So, when I go to the New Parent Breakfast, I think of it as an initiation of members into our wonderful, exclusive,
weird Club. It is a Club unlike the other tribes or teams I root for. It is a lifetime bond of friendship and
togetherness unlike any other. I may quit the Bengals, or vote across party lines, but I will always be a member of
our community. Whether they know it yet or not, these new parents are now part of a new Club. I’m sure they are
scared and have a lot of questions. I’m sure they are wondering how they got there. But I’m also sure that they
are part of a team that they will root for, defend, and love for a lifetime.
Sincerely,
S u n M o n T u e W e d T h u F r i S a t
1
2 3 4 5 6
7 8 9 10 11 12 13
14 15 16 17 18
6:30 PM
Westside
Community
Group • Mom’s
Night Out
19 20
21
2 - 3:30 PM
21 Series
Communication
Devices
22 23 24
6:30 - 7:30 PM
Communicating
Through Music
and Movement
(ages 6 - 12)
25 26 27
28 29 30 31
6:30 - 7:30 PM
Communicating
Through Music
and Movement
(ages 6 - 12)
Please view our online calendar for details at www.dsagc.com/calendar.
JANUARY
presented by Sherry Lanyi, M.A., CCC/SLP
What is AAC? It is the acronym for Augmentative and Alternative
Communication. There are many examples of AAC Devices. How do you
know if your child would benefit from an AAC Device? What should you
expect from an evaluation and where should you go to complete an
evaluation? How do you determine which AAC Device would be best for
your child? What are the top AAC Devices that are most commonly used
and what are the pros and cons for these? Come to this parent workshop
and get answers to these questions. There will be 45 minutes of
presentation and 45 minutes of Q & A.
The afternoon will be hosted by Sherry Lanyi, M.A., CCC/SLP, who is a
Speech-Language Pathologist and the Coordinator of Speech Pathology
at the Perlman Center at Cincinnati Children’s Hospital Medical Center.
She has worked at the Perlman Center for over 20 years. She has
experience serving kids with a variety of diagnoses including CP, DD and
other physical conditions. She has provided service to patients with
complex communication needs in Early Intervention, Early Childhood and
school-age Tech groups. She specializes in the area of augmentative and
alternative communication, and completes comprehensive evaluations
and treatment for both children and adults who present with significant
communication deficits and difficulties with access. In addition to serving
patients, she also provides training, advocates for funding and supervises
a staff of eight speech language pathologists at the Perlman Center.
S U N M O N T U E W E D T H U F R I S A T
1 2 3
9:30 - 10:30 AM
Physical Therapy
(ages 0 - 2)
6 PM
DSAGC
Winter Dance
4
3 - 3:45 PM
Gymnastics
(ages 3 - 5)
5 6 7
6:30 - 7:30 PM
Communicating
Through Music
and Movement
(ages 6 - 12)
8 9 10
9:30 - 10:30 AM
Physical Therapy
(ages 0 - 2)
11
3 - 3:45 PM
Gymnastics
(ages 3 - 5)
12 13 14
6:30 - 7:30 PM
Communicating
Through Music
and Movement
(ages 6 - 12)
15 16 17
9:30 - 10:30 AM
Physical Therapy
(ages 0 - 2)
18
3 - 3:45 PM
Gymnastics
(ages 3 - 5)
19
20 21
6:30 - 7:30 PM
Communicating
Through Music
and Movement
(ages 6 - 12)
6:30 - 8 PM
21 Series
Puberty and
Sexuality
22 23 24
9:30 - 10:30 AM
Physical Therapy
(ages 0 - 2)
7 PM
Westside
Community
Group • Adults
Night Out
25
3 - 3:45 PM
Gymnastics
(ages 3 - 5)
26
6 - 7:30 PM
TEEN
Kitchen Skills
(ages 13 - 17)
27 28
6:30 - 7:30 PM
Communicating
Through Music
and Movement
(ages 6 - 12)
Please view our online calendar for details at www.dsagc.com/calendar.
FEBRUARY
S U N M O N T U E W E D T H U F R I S A T
1 2 3
9:30 - 10:30 AM
Physical Therapy
(ages 0 - 2)
4
3 - 3:45 PM
Gymnastics
(ages 3 - 5)
5
6 - 7:30 PM
TEEN
Kitchen Skills
(ages 13 - 17)
6 7 8 9 10
9:30 - 10:30 AM
Physical Therapy
(ages 0 - 2)
11
3 - 3:45 PM
Gymnastics
(ages 3 - 5)
4 PM
Westside
Community
Group • Annual
Pizza Party
12
6 - 7:30 PM
TEEN
Kitchen Skills
(ages 13 - 17)
13 14 15 16 17
3 PM
African American
Family Network •
Easter Family Fun
18 19
6 - 7:30 PM
TEEN
Kitchen Skills
(ages 13 - 17)
20 21 22 23 24
4 - 6 PM
321 Party
(ages 16 & up)
25
10 AM
WDSD 5K
26
6 - 7:30 PM
TEEN
Kitchen Skills
(ages 13 - 17)
27 28 29
6:30 - 8 PM
ADULT
Kitchen Skills
101
(Ages 18 & up)
30 31
Please view our online calendar for details at www.dsagc.com/calendar.
MARCH
World Down Syndrome Day is celebrated on March 21
(3/21) to symbolize the 3rd copy of the 21st
chromosome present in people with Down syndrome.
Highlights (Oct, Nov, Dec)
We had great participation in our Empowerment Classes this fall.
Classes included Gymnastics, Beginning Beats, Cheerleading and
Exposure to Art (pictured above).
We celebrated our annual Holiday Party at Oasis Conference Center in
Loveland, Ohio. Santa, Mrs. Clause, the Christmas tree ladies and a
dance mob all made an appearance. The party also had crafts, gifts and
awards. A fun time was had by all!
We welcomed new interns,
Rebecca Reed and
Natalia Garcia. We hosted our annual Holiday Party for adults with Down syndrome and their friends. There were a lot of great
costumes! If you are interested in more social opportunities for adults, visit www.dsagc.com.
Our Outreach Coordinator has
been busy advocating for our
community!
Through our 2017 Giving Tree program, we helped 51 families! This means 129 children will receive gifts this
Holiday season and their parents will receive a food gift card. A huge THANK YOU to our sponsors, monetary
donors and the Giving Tree committee (Jena Wells, Teresa Cracas, Laura Tuzun and Charlene Ware).
Also, THANK YOU to Target (Western Hills) for donating wrapping paper, Legos® for donating Lego sets and
Tracy Smith for donating diapers to families with children four and under.
Winter Dance Saturday, February 3
Newport Syndicate |18 E 5th Street Newport, KY
6 PM - 10:30 PM
*ages 15 & up
Our Annual Winter Dance has become one of our signature
celebratory events of the year! Attendees range from couples on
a date night to groups of friends, to teens and adults with Down
syndrome out with their social clubs. We encourage you to join us
for an evening of good food and drinks, dancing, and of course,
fun!
Your ticket to the dance includes admission, light appetizers,
buffet dinner, soft drinks, dessert and 2 drink tickets for beer or wine. You can purchase tickets at www.dsagc.com.
LET’S GET FANCY! Teens and adults with Down syndrome, we invite you to some pre-dance pampering.After
getting glam (hair, nails and make-up done by professionals), a limo will pickup participants and escort them to the
dance that evening. This pre-event takes place at the DSAGC office, 4623 Wesley Avenue, Suite A Cincinnati,
OH. Females arrive at 2:30 PM and males arrive at 4 PM. This is a FREE event, but you must RSVP to
EmmaG@dsagc.com. Limited space is available.
Empowerment Classes Physical Therapy (ages 0 - 2)
Saturdays | 9:30 - 10:30 AM Feb 3 - Mar 10
ABC Pediatric Therapy, 4325 Red Bank Road Cincinnati, OH
Physical Therapy is a therapist-facilitated, progressive-building gross motor program focused on core strength (abdominal and back). Each class builds on the previous one, so you don't want to miss out! This is a group therapy session. There will be one therapist and one PT intern floating around during the session to speak with every family. There will be weekly information sheets emailed to you as a follow up about the topic discussed in class.
At this time, you may ask the therapist about specific questions or concerns pertaining to your child. Each week, a different topic/technique will be discussed as a group and then you will have time to practice with therapists nearby! Due to safety concerns, we kindly ask that you keep siblings home during this class.
Gymnastics (ages 3 - 5)
Sundays | 3 - 3:45 PM Feb 4 - Mar 11
Richard E. Lindner YMCA, 2039 Sherman Avenue Cincinnati, OH
This is a 45-minute class with emphasis on movement education. Focus will be to: Vault) Run and jump off spring board with one jump; Bars) Hold front support and hanging tuck, pike and straddle on bar three seconds with minimal help and perform a chin-up hold with help; Beam) Mount beam and walk forward and sideways with help, jump off low beam and land on feet; Floor) Learn to do a forward roll down an incline to feet, backward roll down incline to feet with help, begin lunge and lever for handstand, perform monkey jump for cartwheel progression and hold a bridge position for 3 seconds. The exercises and activities will help children develop muscular strength, flexibility, balance, coordination and body awareness. There will be 2 YMCA gymnastics instructors for each class as well as many volunteers.
Communicating Through Music and Movement (ages 6 - 12) Wednesdays | 6:30 - 7:30 PM Jan 24 - Feb 28
DSAGC Office
The focus of this class will be on social and emotional learning objectives as well as communication using music and dance. The class will be taught by professional instructors from Dramakinetics.
Register at www.dsagc.com
21 Series Workshops
Communication Devices
January 21 | 2 - 3:30 PM DSAGC Hatton Foundation Community Room
Presented by Sherry Lanyi, M.A., CCC/SLP
What is AAC? It is the acronym for Augmentative and Alternative Communication. There are many examples of AAC Devices. How do you know if your child would benefit from an AAC Device? What should you expect from an evaluation and where should you go to complete an evaluation? How do you determine which AAC Device would be best for your child? What are the top AAC Devices that are most commonly used and what are the pros and cons for each? Come to this parent workshop and get answers to these questions. There will be 45 minutes of presentation and 45 minutes of Q & A.
Puberty and Sexuality
February 21 | 6:30 - 8 PM DSAGC Hatton Foundation Community Room
Presented by Amanda Tipkemper and TJ Nestheide
TJ Nestheide, who is on the Behavior Support Team for Hamilton County DDS, and Amanda Tipkemper, Autism Services Manager at The Children’s Home of Cincinnati, will be speaking about puberty and sexuality - the emotions/feelings/urges involved and how to explain puberty to your child with DS and how to work with the changes that puberty brings. They’ll be available to answer your specific questions.
Register at www.dsagc.com
TEEN Kitchen Skills (ages 13 - 17)
Mondays | 6 - 7:30 PM Feb 26 - Mar 26
DSAGC Office
Participants will learn basic kitchen and cooking skills from professional chefs while also interacting and communicating with same age peers!
ADULT Kitchen Skills 101 (ages 18 & up)
Thursdays | 6:30 - 8 PM Mar 29 - Apr 26
Bauer Marketing, 5508 Fair Lane Cincinnati, OH
This is our entry-level Kitchen Skills class. It can be repeated each year to strengthen skills in the kitchen. Participants will gain hands-on experience! A professional chef and his assistant will teach adults how to use tools and appliances to prepare meals and oversee participants as they create their very own dishes! Throughout the 5-week session, adults will also learn about kitchen safety and tips on healthy eating.
2017 Award Recipients
Volunteer of the Year
Clarissa Rentz became a DSAGC board member in 2016, but for years
she has been doing behind-the-scenes work to help us better understand
and figure out how to best support aging adults with Down syndrome in
our community. Starting back almost 20 years ago, Clarissa has been a
visionary in terms of recognizing the importance of supporting adults with
Down syndrome, especially for those who are experiencing cognitive and
functional changes associated with the aging process.
Through the years, she has written articles for the DSAGC and spoken at
workshops, but perhaps her most important contribution as a volunteer is
the collaborative/mentoring role she has taken on with Christy Gregg, our
Adult Matters Coordinator.
One of the projects Clarissa and Christy have been working on is an
Aging Binder and Baseline Assessment Tool. This is really ground-
breaking stuff! Now, some volunteer roles are more visible than others, but visibility doesn’t mean more important
or mission critical.
Advocate of the Year
Allie has been working in the mail department at Cincinnati Children’s Hospital
for 6 years and has progressively taken on more tasks, which now includes
some database work. Her most recent performance review came back a “5”,
which is the highest mark you can get at the hospital.
Allie is also a budding entrepreneur and artist. She started her own business
called “Allie Art.” She uses colored pencils and she fills intricate patterns with
bright hues to create graphic landscapes – each with unique qualities of
movement and emotion. After completing a design, the artwork is either
framed for display or turned into wearable art in jewelry and accessories.
In addition, last October she traveled to Washington D.C. to attend the National
Down Syndrome Society’s Leadership Summit, where she met fellow
advocates and entrepreneurs from across the country. She spent a day on
Capitol Hill advocating for laws that will better support employment for adults
with Down syndrome, and will also ensure that they are able to work and earn
income without losing their essential medical benefits.
She met with the staff of Senators Portman and Brown, and spoke directly with Congressman Chabot and
Wenstrup – she was even invited to sit in Congressman Chabot’s office chair where she told him that she would re-
design his business cards for him!
Clarissa Rentz
Allie Guard
Community Contributor of the Year
We value collaborating with other organizations who have a heart to
care for and support children and adults with Down syndrome. In the
fall of 2014, the Cincinnati Ballet and Cincinnati Children’s Hospital PT
Department started a program called Ballet Moves. The class was
designed to foster a love of dance and creative expression for kids with
special needs. It is led by Cincinnati Ballet faculty and supported by
experienced physical therapists. Because these classes are led by
such skilled and passionate professionals, the kids feel safe, their
confidence is being built up and real progress is being made with their
gross motor and social skills….not to mention the kids and teachers are
have a lot of fun!
Julie Sunderland, the Director of Education for the Ballet, has been the
heart and soul of this program.
“Julie truly loves our kids and believes in them so strongly and it shows
constantly in her interactions with all of them. Julie, Amy, Donna,
Michelle, and all the volunteers who spend their Saturday afternoons
dancing with our children because they see the so much potential and ability in them.”
Pamela A. Butler ‘Heart of Giving’ Award
This past year, we lost someone who was very dear to the DSAGC - Pamela Butler. In her honor, we started a new
award, the “Pamela A. Butler – Team Captain: Heart of Giving Award.”
Pamela embodied the spirit of giving. She not only gave of her resources, but she also gave her time and energy in
so many ways. She was a great aunt, whose love for her Dylan and all individuals with DS was ever-abundant in
the way she lived her life. Her Buddy Walk team, Team D.O.T., was a perennial Top 10 Team, she served on the
BW Committee for years and if felt like she was advocating and raising resources
on our behalf 365 days a year.
Pamela was selfless, generous, considerate, compassionate, hard-working and oh
so giving. So, in honor of Pamela we have chosen to give this award to Carl and
Linda Dragan, Team Captains for Ryan’s Racers.
Carl and Linda are grandparents to Ryan, who has Down syndrome. After Ryan’s
birth, they immediately jumped in and created a Buddy Walk Team to celebrate
him. In that first year, they were our top fundraisers!
Then they joined the Buddy Walk planning committee. Carl recruited a group of
friends and family, who are our grill team that flip and turn literally thousands of
burgers, hot dogs and chicken patties at the Buddy Walk. Linda is one of our most
familiar faces during t-shirt week and the tireless advocate for their team, Ryan’s
Racers. Each year, they host a bunco night and a corn hole tournament to
support their team. Pamela’s commitment to serve the DS community was
because of Dylan, but it allowed her to spread her wings and impact so many
other lives and families.
Ballet Moves
Carl and Linda
DSAGC in Washington D.C. By Mariclare Hulbert, DSAGC Outreach Coordinator
I was lucky enough to join the DSAGC in July and my job focuses on outreach
in many forms. I support our school, medical, employment, and government
outreach efforts. In early October, I traveled to Washington D.C. to represent
our organization at a Leadership Summit hosted by the National Down
Syndrome Society.
The two-day conference focused on the importance of employment for adults
with Down syndrome. I met and heard from so many fantastic, accomplished
individuals who contribute to their communities through jobs, advocacy,
volunteering, and a vibrant entrepreneurial spirit. The conference culminated
in a surprise dinner event, which was fully-staffed by adults with Down
syndrome. Men and women from all over the country showed off their talent
and professionalism as servers, bartenders, chefs, hosts and hostesses,
musicians, and artists. One of the servers at our table was Kayla McKeon, a
dynamic young woman who recently made history as the first registered
lobbyist with Down syndrome.
Another impressive young woman was Allie Guard. Allie is from Cincinnati and
has worked at Children’s Hospital for seven years. She works in the mailing
department and coordinates returned mail as well as data entry – this is all very important due to HIPAA privacy
laws. Her coworkers and supervisors have commended her hard work and she has been given new responsibilities
and high performance rankings.
In addition to her work at Children’s Hospital, Allie and her mom Sharon
also create and sell colorful art pieces through their company Allie Art
Designs. They sell these beautiful and bright pieces in shops, at a
number of regional art fairs, and even at the Buddy Walk!
I was lucky to be in Allie’s group as we visited elected officials from Ohio.
We spent a day together on Capitol Hill advocating for laws that will better
support employment for adults with Down syndrome, and will also ensure
that they are able to work and earn income without losing essential
medical benefits. We met with the staff of Senators Portman and Brown,
and spoke directly with Congressmen Chabot and Wenstrup. Allie was
able to share her personal story and tell these lawmakers how important it
is to support employment and a living wage for people with Down
syndrome. Everyone we met with was deeply impacted by Allie’s story --
she was even invited to sit in Congressman Chabot’s office chair and
redesign his business cards!
It was wonderful to meet advocates from all over the country. Ashley
Meier Barlow, DSAGC Board Member and mom of Jack, represented the
DSAGC and the state of Kentucky in meetings with Senators McConnell
and Paul, Congressmen Massie, Guthrie, and Yarmuth.
I am grateful for the opportunity to participate in this conference and to
deepen our relationships with advocates and elected officials. I hope this
work will continue to help our families for years to come!
Advocates, Allie and
Sharon Guard
DSAGC Outreach Coordinator,
Mariclare Hulbert
From NDSAN….
The National Down Syndrome Adoption
Network would like to extend blessings to ALL
families who contacted us in 2017.
Una Reflexión Por Marina Viña, Voluntaria Grupo Hispano DSAGC
Las decisiones tomadas en el pasado nos han llevado a dónde
estamos hoy, han moldeado lo que somos y nos han permitido
crecer y madurar como individuos.
Cuando se toma la decisión de crear una familia, las implicaciones
son más grandes de lo que imaginamos. Tenemos en nuestras
manos la posibilidad de abrir caminos y crear oportunidades para
nuestros hijos. Hacemos planes de la ruta a seguir y las metas
hacia donde llegar, midiendo cuidadosamente nuestras decisiones:
el preescolar que queremos para ellos, las clases de arte o música
que van a recibir, la escuela que van a atender. Todo para sentar
las bases de su éxito personal.
Cuando tenemos un hijo con capacidades especiales, las
decisiones que tomamos como padres y madres de familia no son
diferentes. Pero siento que somos más arriesgados, pues estamos
dispuestos a abrir nuevas puertas, probar nuevas ideas y abrir
nuevos caminos, todo para que nuestros hijos sean exitosos y
disfruten su travesía.
Mi esposo y yo tomamos la decisión de trasladarnos a vivir en Los
Estados Unidos. Tomamos la decisión, no solo pensando en el
éxito profesional que podríamos alcanzar, sino en las posibilidades que le podríamos abrir a nuestra hija Natalia.
Era una bebe cuando dejamos atrás nuestra familia y amigos, para empezar de nuevo en Cincinnati.
No fue una decisión fácil, pero no nos hemos arrepentido. Natalia disfruta intensamente a su familia en Colombia
cada año, cuando viajamos de visita, pero también le dan ganas enormes de regresar a Cincinnati, donde están
su hogar, sus amigos y ahora, su trabajo.
El apoyo y las herramientas que encontramos en DSAGC nos ayudaron a trazar el mapa para nuestra familia.
Tomamos la decisión de estar muy involucrados en la educación de Natalia y encontrar un balance adecuado
entre las actividades de recreación y su tiempo libre en casa. Escogimos el preescolar que debía atender y el
distrito escolar donde queríamos verla crecer. Participamos activamente en las reuniones de su escuela y
construimos un equipo sólido de trabajo con sus maestras.
Ahora, cuando Natalia se prepara para entrar en el mundo de los adultos, la apoyamos y guiamos en sus
decisiones para alcanzar sus metas de vida. De la misma forma que lo hacemos con su hermana. Como muchos,
hemos aprendido que las metas de nuestros hijos con necesidades especiales son muy parecidas a las de sus
hermanos.
No sabemos cómo será el mañana de Natalia. Hoy, vive y disfruta intensamente cada día; planea y crea lo que
será su siguiente día, y eso es lo importante. Paso a paso la apoyamos en su travesía.
Marina and her
daughter, Natalia
A Reflection By Marina Viña, Hispanic Community Group Leader
Decisions and choices taken in the past lead us to where we are now
and in part they shape who we are. The choices we have made on our
journey let us grow as individuals.
When you make the choice of having a family, the implications are
much bigger and broader than you have ever imagined. We have in our
hands the possibility of opening new paths and creating new
opportunities for our children. We plan the map and route to follow, the
goals we want them to achieve, measuring carefully our choices and
decisions: the preschool they should attend, the enrichment classes we
want them to be enrolled in, the school we want them to go. All to build
a safe nest for them to be successful.
When we have a child with special needs, the choices we make as
parents are not that different. But I feel we are more eager to take risks,
try new ideas and open a whole new way of doing things, just to see
our kids succeed and be happy in their journey.
My husband and I made the choice to move to the U.S. We made this
decision, not only thinking about our careers but also in the possibilities
we would be able to create for our daughter Natalia. She was a baby
when we moved to Cincinnati, leaving behind our family and friends, to
start a new journey.
It was not an easy decision, but we have no regrets. Natalia enjoys
immensely visiting her family in Colombia every year, but she is also
happy to come back to Cincinnati, to her home, her friends and now,
her work.
The support and the information we found in DSAGC helped us trace
the map for our journey as a family. We made the decision to be very
involved in Natalia’s education and finding the right balance between
keeping her busy after school and enjoying quiet time at home. We
chose the preschool we wanted her to attend and the school district
where we wanted her to grow. We participated very actively in her
school meetings and built solid work teams with her teachers to make
sure she was going to be successful.
Now, as Natalia gets ready to navigate the adult world, we support and
guide her in her own decisions along the journey she has planned. The
same way we do it for her sister. We have learned that the goals of
children with special needs are not that different from the ones of their
siblings.
We don’t know what tomorrow is going to look like for Natalia. But we
know that today, she lives and enjoys every minute of her day; she
plans and creates what her next day will look like, and that’s what
matters. Step by step we support her journey.
Our hearts are with the Malohn-Pollitt family. The family of five was killed in a car accident in November 2016.
They were part of our local Down syndrome community , as their oldest daughter, Hailieann, had Down syndrome.
The family lived in Alexandria, Kentucky and the children attended Grant County schools.
Samantha, 27 • Rodney, 26 • Hailieann, 9 • Brenden, 8 • Cailie, 6
Cecil Baker
Tommy Benedict, Individual with Down syndrome
Eleanore M. Brigger, great-grandmother of Caroline Hodapp
Pamela Butler, great-aunt of Dylan Tomlin
Maggie Campbell, individual with Down syndrome
Mark Collins
Corinne Comarata
Dale Cordie, grandmother of Teddy Kremer
Peggy Creamer, mother of Michael Creamer
Ken Czillinger, brother of Tom Czillinger
Danika Fern Dapper, individual with Down syndrome
Eileen Dean, grandmother of Robert Hunt
William Eckhoff, grandfather of Carmen Eckhoff
Theodore J. Fleming, great-uncle of Devin Fleming
Katherine Gray Flynn, grandmother of Brody Flynn
Randy Gray, grandfather of Georgia Rellahan
Edgar William “Bill” Gregg
Martha Grimm, great-grandmother of Gracie Tate
Edward M. Haake
Sue Hayes, grandmother of Emily Hayes
Stephen Heilman, uncle of individual with Down syndrome
Dawn M. Heitfeld
Carl Heitkamp
Marion Eileen Kistner, individual with Down syndrome
Albert Knollman
Kyle Kohler
John Matusak
Rita McCloy, grandmother of Sam McCloy
Mary Ann Meyers, great-aunt of Kaitlyn Gonzalez
Jackie Moore, individual with Down syndrome
Rox Panetti, indivudal with Down syndrome
Leonard Partusch, grandfather of Hannah Castle
Hailieann Pollitt, individual with Down syndrome
Alberta Raphael, aunt of Gloria Raphael
Martha “Marty” Reser, great-grandmother of Ella Morgan
Jimmy Ritter, individual with Down syndrome
Antoinette Titchener, individual with Down syndrome
Billy Joe Tollett, grandfather of Leightyn Tollett
Brianna Ware
Jeffrey Ziegler, individual with Down syndrome
Memorial Donations October 2016 - December 2017
If you’d like to set-up a memorial or donate in memory of someone, please contact Amie Smith at amies@dsagc.com.
AREA SPECIFIC GROUPS
SPECIAL INTEREST GROUPS
BIRTH YEAR GROUPS • 2011 - 2017
A Community Group is designed to create opportunities for families that
have children with Down syndrome to network and share common
interests, concerns, challenges and information. They do this through
community events, informational meetings and Facebook groups. All of
our community groups are led by service-minded volunteers with the
help of our Community Groups Coordinator, Amy Iten.
Butler/Warren
Serving families in Butler and Warren counties
BACH
Serving families in Brown, Adams, Clinton, Highland and surrounding
counties
Eastside
Serving families in the Cincinnati Eastside area and downtown Cincinnati
K.I.D.S.
“Kentuckians Interested in Down Syndrome” serves families in Northern
Kentucky
Westside
Serving families in the Cincinnati Westside area and downtown
Cincinnati
African American Family Network (AAFN)
Serving families by providing information, support and networking
D.A.D.S.
Discussion and networking on the aspects of being the father of a
child with Down syndrome
Hispanic Family Group
Social and educational opportunities for Spanish-speaking families
*please contact Marina at 513.490.2834
DSAGC Teen Club
Serving teens ages 13—18 through social opportunities and
networking
Grandparents
Get connected with other grandparents and share stories about your
grandchildren
Community Groups
P - 513.761.5400 F - 513.761.5401
4623 Wesley Avenue, Suite A
Cincinnati, OH 45212
www.dsagc.com
www.facebook.com/dsagc
The DS Press is published four times a year. The purpose of
the DS Press is to share current information about various
topics relating to Down syndrome and to publicize the activities
of the DSAGC. The DSAGC does not endorse, recommend or
support any particular regime, therapy or treatment. We
welcome articles from parents, professionals and other
interested parties.
Jim Hudson jimh@dsagc.com
Executive Director
Andy Baker andyb@dsagc.com
Bookkeeping Assistant
Kerin Caudill kerin@dsagc.com
Event Manager
Emma Daniels emmad@dsagc.com
Adult Matters Engagement Coordinator
Joanie Elfers joanie@dsagc.com
School Age Matters Coordinator
Amy Fleming amy@dsagc.com
Development Associate
Emma Ganiban emmag@dsagc.com
Program Assistant
Natalia Garcia nataliag@dsagc.com
Self-Advocate Intern
Christy Gregg christyg@dsagc.com
Adult Matters Coordinator
Mariclare Hulbert mariclareh@dsagc.com
Outreach Coordinator
Amy Iten amyi@dsagc.com
Community Groups Coordinator Kari Kester karik@dsagc.com
Donor Relations Manager
Rebecca Reed rebeccar@dsagc.com
Self-Advocate Intern
Amie Smith amies@dsagc.com
Office Coordinator
Lisa Steele lisa@dsagc.com
Business Manager
Sally Tilow sally@dsagc.com
Grant Coordinator
Stephanie Thompson stephanie@ndsan.org
NDSAN Director
Krissy Vinson krissyv@dsagc.com
Volunteer & Communications Coordinator
Jena Wells jenaw@dsagc.com
Early Matters Coordinator
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