October - December 2019

Down Syndrome Research Symposium

Inside This Issue:

Hosted by DSACOSaturday, November 2, 2019 | 8:30 a.m. - 12:00 p.m.Marriott Columbus University Area3100 Olentangy River Rd. | Columbus, OH 43202

Join us in this unique opportunity for individuals with Down syndrome, their families, caregivers and professionals to learn about new Down syndrome biomedical and clinical research opportunities. The Research Symposium will feature Dr. Stephanie Sherman, who is a professor in the Department of Human Genetics at Emory University in Atlanta, Georgia. Her research is focused on identifying genetic and environmental risk factors associated with the causes and consequences of Trisomy 21. She and her colleagues across the U.S. have established a large clinical research program to identify biological pathways that are perturbed in Down syndrome with the goal to identify possible clinical and therapeutic interventions. Dr. Sherman will give an overview of research in Down syndrome and the new advanced tools that will help answer significant clinical questions. She will also highlight a nationwide research study that is helping to understand what causes the extra chromosome 21 to be present, and why some children with Down syndrome are more likely than others to have certain medical problems.

Additional topics will include: » Policy initiatives to improve Down syndrome medical care and research, Vince Randazzo, NDSS

» The INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) and updates on DS-Connect, Lisa Kaeser, National Institute of Health (NIH)

» LIFE-DSR Study, Hampus Hillerstrom, LuMind IDSC » Acid Reflux Parameters in Infants with DS, Dr. Steven Ciciora, Nationwide Children’s Hospital

» Hypoglossal Nerve Stimulator (a possible alternative to C-Pap), Angie Duggins, Cincinnati Children’s Hospital

» Memantine, an FDA-approved Alzheimer’s disease drug on enhancing the cognitive abilities of adolescents and young adults with DS, Dr. Alberto Costa, Case Western Reserve University

» Repetitive & Restrictive Behaviors/Anxiety Disorders, Laura Simon, The Ohio State University

» Sexual Health Education Barriers, Liz Schmidt, The Ohio State University » Resistance Training & Cognition, Emily Phillips, The Ohio State University

Registration is $10 per family. Free on-site childcare will be provided for those who request it no later than October 20th. Please visit dsaco.net for registration information.

Stay Connected with DSACO

DSACO: Down Syndrome Association of Central Ohio

@DSACO_Cbus

@DSACO_Cbus

Keeping Up is a publication of the Down Syndrome Association of Central Ohio (DSACO).

K E E P I N G U PAwareness | Acceptance | Inc lus ion

DSACO in the Community

Advocacy Efforts

Medically Speaking by Dr. Murugu Manickam

Fall & Winter Programming

Upcoming Events

Activity & Resource Groups

Page 22 0 1 9 Keeping Up | October - December 2019

Get involved with us! Whether you’re new to DSACO or if you’ve been around for all of our 35 years, there are plenty of opportunities to engage, connect, and learn.

3) Our cover story is all about DSACO’s Research Symposium on Saturday, November 2. Its topics will range from sleep apnea to Alzheimer’s disease and everything in between. You won’t want to miss speakers from the National Institutes of Health, National Down Syndrome Society, and researchers from around the region as they share their latest work and how you can get involved both locally and nationally.

2) Throughout the rest of 2019 we have multiple health, safety and recreational opportunities for the whole family. Events include Law Enforcement LowDOWN (see page 6 for an opportunity near you), Phlex Fitness (Mike Nicholson’s Hip Hop class), and Goldfish Swim School.

1) Don’t forget, applications for DSACO scholarships are due at the end of the year. We offer financial assistance for individuals with Down syndrome to engage in their community—but these funds are available only if you apply, so don’t delay! More information can be found at dsaco.net/scholarships.

President & CEODown Syndrome Association of Central Ohio (DSACO)

STEPHANIE LEPPERT is DSACO’s new Outreach & Advocacy Associate.

Stephanie will be planning for a variety of programs and events, and will help promote advocacy, attend meetings and participate in public speaking.

Some of her interests include participating in Worthington Special Olympics basketball, power-lifting and soccer. She is also a volunteer helper for the gymnastics team.

Stephanie also enjoys dancing, reading books, traveling, spending time with her family and friends, shopping, playing the piano, using the computer, talking on the phone with her friends and singing.

She lives in Worthington with her mom and dad. She enjoys visiting her sister, Madeline, in San Diego and visiting her brother, Christian, in South Carolina.

3-2-1 Update

DSACO Welcomes New Staff Member

Kari Jones with her brother, Alex, at the 2019 DSACO Golf Classic on July 15 at The Country Club at Muirfield Village.

OUTREACH & ADVOCACY ASSOCIATE:

Family Health Care Survey

We have created a health care survey to assess the quality of medical care that our families receive—and now we need YOUR input! We are interested in how you (as parents) and your medical team follow national guidelines for Down syndrome. This information will help us in identifying ways to improve the communication of these health care guidelines. The completion of this survey will ultimately assist DSACO and your medical team in providing the highest levels of medical care, education, and support to individuals with Down syndrome and their families. We hope that you take time to fill out the survey and to help improve the lives of our loved ones with Down syndrome!

To complete the survey, please visit:dsaco.net/research-opportunities

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DSACO in the Community

(1) On September 18 and September 19, Abbott Nutrition sent volunteers to assist with Buddy Walk T-Shirt sorting & counting at the DSACO office. (2) DSACO invited Resource Group Leaders and Board Members to see a private screening of The Peanut Butter Falcon on August 21 at Gateway Film Center. (3) Some of DSACO’s moms utilized DSACO’s Conference Scholarship and attended the National Down Syndrome Congress Convention in Pittsburgh, PA from June 27 - 30. (4) DSACO Program Coordinator, Kim Baich, attended the Association of Women’s Health, Obstetric and Neonatal Nurses (AWHONN) Conference in Cleveland on September 12. (5) Members of the DSACO team, along with Spanish-speaking volunteers, hosted a Latino Family Picnic on August 17, 2019 to enhance DSACO’s Latino Outreach

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3 4 5

Purchase your 2020 Faces in the Community Calendar!DSACO’s 2020 Faces in the Community calendar is now on sale! Purchase your calendar today online at dsaco.net/calendar or visit the DSACO office. Calendars are $10/each and can be shipped for an additional fee.

DSACO would like to thank all of the generous photographers for their time and resources, photographing DSACO’s families at no cost this past summer. Thank you to all of the families that submitted photos for the 2020 Faces in the Community calendar - we had an incredible response and more photos submitted than in years past! We hope you enjoy the 2020 Faces in the Community calendar!

*Please note, DSACO had an impressive number of photos submitted. Unfortunately, not all photos that were submitted could be selected.

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The Conference Scholarship Fund of the Down Syndrome Association of Central Ohio is designed to assist members who wish to attend conferences of subject matter that will be informative and useful to them and/or their family.

Funds may be used for conference registration, travel expenses to/from the conference (no rental cars) or lodging and will be distributed on a reimbursement basis.

Any adult individual with Down syndrome and immediate family members residing in DSACO’s service area is eligible to apply for funding to attend local, regional, state and national conferences whose subject matter is relevant to the education of the individual. The program is based on a first come, first serve basis within eligibility guidelines.

For more information about the Conference Scholarship Program and other DSACO Scholarships available, please visit dsaco.net/scholarships or call DSACO at 614.263.6020.

Scholarship Spotlight

In June, I attended the National Down Syndrome Congress convention in Pittsburgh. Over the long weekend, I attended a research session about developments with Alzheimer’s, multiple breakout sessions on topics such as reading and math instruction for the early years, IEP law, and using music to teach a variety of concepts. In addition to the educational component, I got to see stars from Born This Way and hear a few self advocates speak (Megan Bomgars and Amy Bockerstette). I admit I was a little star stuck!

Since this year’s conference was so close to home, an added benefit was the fact that so many central Ohio moms attended, giving us the chance to spend our down time bonding and getting to know each other better. My traveling trio was made up of all moms of boys born in 2015, so we have a lot in common! It was fun exploring the city with these women!

This conference was definitely worth while and I know I’ll make it a priority each time it comes back to the area. - Jen Dramble, DSACO mom

Conference Scholarship Program

I really enjoyed the NDSC conference this year. I felt like I got some good information to use in the workshops. There were so many topics that I wanted to hear about that it was hard to decide which to attend. My favorite workshop presenter was David Stein, the author of Supporting Positive Behavior in Children with Down Syndrome. He gave some great ideas about behavior management.

I was inspired listening to Amy Bockerstette talk about her life and viral golf video during the keynote address. I also liked connecting with the other families and sharing stories about our kids. I definitely want to go back again! - Melissa Bowersock, DSACO mom

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Programming for Families

African American Outreach EventSunday, October 20, 2019 | 2:30 - 4:30 p.m.Martin Luther King Branch - Columbus Metropolitan Library1467 E. Long Street | Columbus, OH 43203

Join us for our next gathering! This event will feature Dr. Barbara Jones Warren, Professor of Clinical Nursing at The Ohio State University College of Nursing. She is also an Affiliate Faculty for the Kirwan Institute for Race and Ethnicity at The Ohio State University and has a private practice at Orleans Psychological Services, LLC. where she provides psychotherapeutic, evidence-based interventions for individuals, couples and families. She will present information on health care disparities. Please plan to come and be a part of our discussion.

Appetizers will be served and childcare will be provided.

The event is FREE, but registration is required. Please visit dsaco.net/AAO for more information or to register. For questions, please contact Gail Hubert at 614.263.6020 ext. 1055 or ghubert@dsaco.net.

New Parent BrunchSaturday, November 16, 2019 | 10:00 a.m.Mozart’s Cafe | 4784 N. High Street | Columbus, OH

DSACO is pleased to host our annual New Parent Brunch for babies born in the last 13 months, their parents and siblings. Come enjoy a complimentary brunch, meet other new families, and learn more about the programs and resources available through DSACO.

For more information or to register, please contact Carey Eash at ceash@dsaco.net or 614.263.6020 ext. 1025.

DSACO’s Lunchtime WebinarDSACO will continue to host bi-monthly webinars to address a wide variety of topics.

WEBINAR DETAILS:Wednesday, November 13, 2019 | 12:00 - 12:45 p.m.Topic: Updates on Down Syndrome Research

Can’t make the Research Symposium? Kim Baich, DSACO’s Program Coordinator of Medical Initiatives, will discuss what is happening in the world of Down syndrome research. Learn about local, regional and national studies currently taking place. Information on national organizations that are committed to Down syndrome research will be shared.

Webinars are free, but registration is required to obtain the link. Please visit dsaco.net/lunchtimewebinar to register.

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Programming for Families

Law Enforcement LowDOWNFree Family EventGenerously sponsored by

Join DSACO and get to know the men and women who work hard everyday to keep us safe! Members of your local law enforcement are excited to meet all our families! Our Law Enforcement LowDOWN events will help teach the basics of safety while also providing a chance to meet a local police officer, get a tour of a police cruiser and the station, and even get to meet one of the police dogs from the K-9 unit! There will be food and beverages along with prizes available for all who attend. All ages are welcome to attend.

Please join us at the upcoming Law Enforcement LowDOWN events, and be on the lookout for future special events near you!

Registration is FREE, but required. For more information and to register, please visit dsaco.net/lawenforcementlowdown or contact Caitlyn Lowe at 614.263.6020 ext. 1020 or clowe@dsaco.net.

DSACO’s Post-Secondary Scholarship Opportunity

Thanks to the generous support of The GLOW Foundation, DSACO will again be offering college scholarships to assist siblings, parents, cousins, or other relatives of individuals with Down syndrome who are planning to pursue careers in which they will positively impact the lives of individuals with Down syndrome. People with Down syndrome who are enrolled in a college program are also eligible and strongly encouraged to apply!

Since its inception in 2004, more than $125,000 has been awarded through DSACO’s Post-Secondary Scholarship Program. You don’t want to miss out on this opportunity!

SCHOLARSHIP DETAILS:

The scholarship funds may be used to pay for incurred education expenses such as coursework, tuition, or materials purchased for

academic needs (PC, books, etc.). The award can be used for any expense approved by the institution.

The application will be available at dsaco.net/postsecondaryscholarship beginning November 1, 2019. Completed applications must be received no later than January 31, 2020 at 5:00 p.m. 

Scholarship recipients will be awarded and recognized at DSACO’s World Down Syndrome Day Celebration on March 21, 2020.

• Network Night with Muskingum County Sheriff’s Office Tuesday, October 8, 2019 | 6:00 - 7:30 p.m. Muskingum County Board of DD 1304 Newark Road | Zanesville, OH 43701

• Trick or Treat with Hilliard Police Saturday, October 12, 2019 | 10:00 - 11:30 a.m. Hilliard Police Department 5171 Northwest Parkway | Hilliard, OH 43026

• Pumpkins and Pickerington Police Sunday, October 20, 2019 | 11:00 a.m. - 12:30 p.m. Pickerington Police Department 1311 Refugee Road | Pickerington, OH 43147

• Delaware County Sheriff’s Office Sunday, November 17, 2019 | Time to be determined Delaware County Sheriff’s Office 7991 Columbus Pike | Lewis Center, OH 43035

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Programming for Individuals with Down Syndrome

Improv ClassesMondays, October 14 - December 9, 2019 | 6:30 - 8:00 p.m.Class Acts Backspace | 1266 Virginia Ave. | Columbus, OHFee: $100 for 9-week session | Ages 16+DSACO’s Ann Barbour Performing Arts Scholarships are available!

DSACO received so much positive feedback after our initial one-day Improvaganza that we just had to keep this incredible program going! Rob Snow and company will be launching a full session of improv classes for individuals with Down syndrome, ages 16+ right here in Columbus! Data reflects the positive impact of this program in areas such as eye contact, listening skills, quick thinking, voice projection, and teamwork.

Class size is limited to 15 participants – first come, first serve. Pre-and-post data will be collected. Please check your calendars carefully before registering as attendance at all classes is required. More information and registration can be found at dsaco.net, or by contacting Marge Barnheiser at 614-263-6020 ext. 1035 or mbarnheiser@dsaco.net.

Fall Session of P.A.L.S.Tuesdays, October 15 - November 19, 2019 | 6:30 - 8:00 p.m.DSACO Office & Cornerstone DeliFee: $10 for 6-week session

P.A.L.S. is a weekly series of fun meetings for individuals ages 14-23. Led by a licensed Social Worker, P.A.L.S. gives teens and young adults an opportunity to network with peers, develop skills for adult life, and discuss topics that are relevant to them in this stage of life – all while having a great time!

Discussion topics are determined by the group and may include: having a disability, social appropriateness, the art of conversation, setting goals, healthy eating, gaining independence, and how to deal with grief and loss.

DSACO Recreation Scholarship Reminder:

The end of 2019 is quickly approaching, so don’t forget to apply to access the DSACO Recreation Scholarship for this year!WHAT IS THE DSACO RECREATION SCHOLARSHIP?The DSACO Recreation Scholarship is a financial award for individuals with Down syndrome to participate in recreational activities. A maximum award of up to $200 can be used annually.

WHAT IS THE CRITERIA FOR THE SCHOLARSHIP?To use the scholarship, all applicants must live in one of the 23 counties within the DSACO service area. Within 30 days of completion of the recreation program, the scholarship application along with the receipt must be mailed into DSACO. * Completion of the program is required for the scholarship.

***Please Note: Household Income is not a determining factor in eligibility! We encourage all families to apply and benefit from this opportunity!***

If you have questions about the Recreation Scholarships, please contact Caitlyn Lowe at clowe@dsaco.net or by calling the DSACO office at 614.263.6020.

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Programming for Individuals with Down Syndrome

DSACO’s Jump Start Swim ClinicNovember 18 - 22, 2019Goldfish Swim School Lewis Center7838 Green Meadows Dr. N. | Lewis Center, OH 43035All sessions will be 30 minutes long between 4:00 - 6:00 p.m.

Make a splash with DSACO at Goldfish Swim School!

Come swim with us at the DSACO Jump Start Clinic! Goldfish Swim School offers Jump Start Clinics for introductions to swimming and are hosting an exclusive clinic just for DSACO! Dive into the fundamentals of water safety and the basics of swim lessons during this week-long clinic.

Spots are LIMITED, register for yours today! For more information and registration, please visit dsaco.net, or contact Caitlyn Lowe at clowe@dsaco.net or 614.263.6020 ext. 1020.

Hip Hop Fitness Class with Mike NicholsonSunday, October 27, 2019 | 4:30 - 5:30 p.m.Phlex Fitness858 Morrison Road | Gahanna, OH 43230

Join DSACO for a Hip Hop class offered by Phlex Fitness! Phlex Fitness is known for its fun environment and all-inclusive group classes. This class is open to those who are 8 and up, and all fitness levels are welcome. Parents and siblings are invited to participate as well, but all must register to participate!

**Opportunities to win exclusive prizes for all who register and attend!

This program is FREE, but registration is required.

Be sure to reserve your spot no later than Friday, October 25th. Please register at dsaco.net. For questions or more information, please contact Caitlyn Lowe at clowe@dsaco.net or (614) 263-6020 ext. 1020.

Columbus Crew SC Soccer ClinicTuesday, October 8, 2019 | 6:00 - 8:00 p.m.MAPFRE Stadium | 1 Black & Gold Blvd. | Columbus, OH 43211Ages 7+ and siblings

Come join DSACO and the Columbus Crew SC for an exclusive soccer clinic and pizza! Learn basic soccer skills and essentials of the game during this evening of fun with the Columbus Crew. No Prior soccer experience is required, all skill levels are welcome!

We are inviting all individuals with Downs syndrome and their siblings to participate. All participants must be ages 7 and up. This is a FREE family friendly event! Pizza will be provided after the clinic.

Please register no later than Friday, October 4th at dsaco.net/event/soccerclinic. For questions, please contact Caitlyn Lowe at 614.263.6020 ext. 1020 or clowe@dsaco.net.

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Medically Speaking: by Dr. Murugu Manickam

Everyone has a vitamin they should be taking according to the vitamin’s label- senior vitamins for those over 65, vitamins for pregnancy, vitamins for women, vitamins for children and so many more. There are those that advocate for a special vitamin for individuals with Down syndrome of course. Historically, one of the most notorious, was a vitamin that was peddled in the 1970s as a cure for Down syndrome because it showed that some patients had some cells that showed only 2 copies of chromosome 21 after taking it - in fact this is something that naturally happens over time. So, should your loved one with Down syndrome take a special vitamin?

The answer is not so black and white. For one thing, vitamins are not regulated by the Federal Drug Administration (FDA), which means they do not need to be vetted to a high scientific rigor that medications do. Multiple studies have shown that vitamins are fairly inconsistent in the amount of vitamins provided. There are some national groups that are very reputable, but there are some that are just rubber stamping approval. A reputable national group is, Current Good Manufacture Practice.

Our bodies are able to handle vitamins fairly efficiently, and anything we don’t need, we urinate out. As long as we are not “mega-dosing” vitamins, our bodies can handle the water soluble vitamins (B vitamins, Vitamin C, and most others) very well. Fat-soluble vitamins such as Vitamin A, Vitamin D, Vitamin E, Vitamin K are a little harder to get rid of and can cause toxicity from overdose. These are definitely ones that you want to supplement carefully.

Most dieticians will tell you that if you or your loved one eats a well balanced diet, you should get plenty of vitamins for normal growth and development. It is important to distinguish between a dietician who has an undergraduate/graduate degree and board certification versus a nutritionist, which do not have true credentialing or standardized training (unless also as a dietician).

One of the follies of the field of nutritional supplements is the cost - the special vitamin pills are often not significantly different than the standard vitamins and can cost up to 10x more. Specialized forms of vitamins are not necessary - methyl B12 is no different from regular B12, despite claims (as a geneticist, we take care of children with real B12 disorders and know this area well). The evidence in balanced, well-designed clinical studies show no significant benefit for individuals with Down syndrome. This has been independently studied extensively and despite anecdotes, helping with cognition, behavior and lifespan, none have provided a benefit. Even in the realm of overall medicine, only with a few conditions, have vitamin supplements really been found to be beneficial (specifically for the eye). Fish oils and Vitamin D (in those with normal Vitamin D levels) are two that are remedies for everything without evidence.

In general, though, the risks associated with supplementing with standard dose vitamins are minimal (mega-doses should never be done without a specialist’s involvement). If you or your child do not eat a balanced meal, whether because of Celiac disease or self-restriction, vitamin supplements are absolutely indicated. For everyone else, any excess vitamins are just being peed out, and therefore it is not money well spent.

Vitamin supplements and Down syndrome

Page 102 0 1 9 Keeping Up | October - December 2019

Nuestro RinconcitoEl pasado 17 de agosto se llevó a cabo el Picnic para familias Latinas de DSACO, durante algunas horas las familias disfrutaron de manualidades, juegos de mesa y una buena charla entre amigos, en donde además tuvimos la oportunidad de conocer nuevas familias.

Nuestro fotógrafo Kyle Mckay estuvo presente para captar momentos divertidos entre los niños y adultos asistentes al picnic, además de una fotografía familiar. Tuvimos la oportunidad de escuchar sus necesidades y experiencias, en lo personal estoy muy agradecida con su asistencia, fue un gusto conocerlos.

Queremos invitarlos a los próximos eventos de DSACO entre los cuales destacan:

Simposio de Investigación sobre el Síndrome de Down el próximo 2 de noviembre de 2019. No pierdan la oportunidad de escuchar a presentadores nacionales y locales que nos compartirán la información mas reciente acerca de la investigación sobre el Síndrome de Down.

Durante el Simposio se ofrecerá servicio de guardería a las familias que lo soliciten, además DSACO ofrece cubrir el costo de inscripción en caso de que no estén en condiciones de realizarlo, por favor no duden en contactarme para más información, o si lo desean pueden visitar dsaco.net

Fiesta Navideña 2019, por supuesto no puede faltar la reunión navideña de este año, que se llevara a cabo en Star Lines Polaris el 7 de diciembre de 9am- 12pm, estaremos compartiendo la información próximamente.

Vanessa Armentavarmenta@dsaco.net | 614.263.6020 ext. 1060

Mamás Latinas de DSACO

Que importante es saber que nuestros hijos son atendidos por profesionales de la salud y que además ellos siempre estén actualizados.

Se han diseñado lineamientos de atención medica que ayudan a definir los estándares de atención de calidad para las personas con Síndrome de Down. Estos incluyen información sobre los tipos de condiciones médicas que las personas con Síndrome de Down pueden padecer, así como sugerencias para la intervención temprana, dieta alimenticia, el ejercicio y otros problemas que pueden o no surgir, además por supuesto de las pruebas de detección.

Creo que es importante conocer estas guías primero para estar informados y también porque nos ayudan como padres a saber que necesitan nuestros hijos y poder comunicárselo a nuestros médicos.

Queremos invitarlos a la próxima platica sobre este tema:DOMINGO 17 DE NOVIEMBRE 20192:00- 4:00 p.m.

Para más información por favor comunícate con Vanessa Armenta al 614.263.6020 ext.1060 o por correo electrónico a varmenta@dsaco.net

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DSACO Holiday Party

Don’t miss DSACO’s annual Holiday Party this year! Join us for music, bowling, holiday crafts, face painting and breakfast at Star Lanes Polaris. Bring the whole family for a fun morning! Santa and Mrs. Claus will be there to meet with all the kids. Parents, please bring one, small wrapped gift per child, if you’d like Santa to give a gift to your child.

Please register at dsaco.net/holidayparty before November 29, 2019. If you have any questions, please contact Katie Garcia at kgarcia@dsaco.net or 614.263.6020 ext. 1040.

Upcoming Events

Join us at our new location and experience an event unlike any other! The Dancing with Our Stars Gala highlights 40 adults with Down syndrome performing professionally, choreographed dance routines for the viewing pleasure of all guests. In addition, guests are treated to delightful hors d’oeuvres, dinner and dancing; all while raising funds for the Down Syndrome Association of Central Ohio’s programs and services.

Sponsorship opportunities are available. For more information, please visit dsaco.net/gala or contact Evanthia Brillhart at ebrillhart@dsaco.net or 614.263.6020 ext. 1015.

2020 Dancing with Our Stars Gala - Save the Date!

Saturday, February 1, 2020The Ohio State University Airport - Hangar 42160 W. Case Road | Columbus, OH 43235Cocktail Hour begins at 6:00 p.m.

World Down Syndrome Day Celebration & Fashion Show

Save the date for DSACO’s 2020 World Down Syndrome Day Celebration! Join us as we celebrate inclusively with the community at-large at Polaris Fashion Place. Featuring the Proud to Be Me Fashion Show, food and fun it’s a celebration you will not want to miss!

More information can be found at dsaco.net/wdsd.

Saturday, March 21, 2020Polaris Fashion Place1500 Polaris Pkwy | Columbus, OH 43240

Saturday, December 7, 2019 | 9:00 a.m. - 12:00 p.m.Star Lanes Polaris8655 Lyra Drive | Columbus, OHFee: $10 per family, includes breakfast, bowling & shoe rentals

510 E. NORTH BROADWAY, 4TH FLOOR | COLUMBUS, OH 43214 | 614.263.6020 | DSACO.NET

Kari Jones President & CEO kjones@dsaco.net 614.263.6020 ext. 1000Amanda Johnson VP of Programming & Strategic Partnerships ajohnson@dsaco.net 614.263.6020 ext. 1010Marge Barnheiser Director of Public Policy & Adult Services mbarnheiser@dsaco.net 614.263.6020 ext. 1035Evanthia Brillhart Director of Marketing & Events ebrillhart@dsaco.net 614.263.6020 ext. 1015Katie Garcia Marketing & Events Coordinator kgarcia@dsaco.net 614.263.6020 ext. 1040Kim Baich Program Coordinator of Medical Initiatives kbaich@dsaco.net 614.263.6020 ext. 1030Carey Eash Program Coordinator of New Parent Outreach ceash@dsaco.net 614.263.6020 ext. 1025Gail Hubert Program Coordinator of Minority Outreach ghubert@dsaco.net 614.263.6020 ext. 1055Caitlyn Lowe Program Coordinator of Health Services clowe@dsaco.net 614.263.6020 ext. 1020Vanessa Armenta Program Coordinator of Latino Outreach varmenta@dsaco.net 614.263.6020 ext. 1060Stephanie Leppert Outreach & Advocacy Associate sleppert@dsaco.net 614.263.6020 ext. 1065Barbara Leman Office Manager bleman@dsaco.net 614.263.6020 ext. 1005

Keeping Up is a publication of the Down Syndrome Association of Central Ohio (DSACO), reporting items of interest relating to Down syndrome. DSACO does not promote or recommend therapy, treatment, institution, or professional system. Any editorials are the opinion of one person and not meant to represent the exclusive opinion of DSACO. DSACO is a 510(c)(3) nonprofit organization. Contributions are fully tax-deductible.

Advocacy Efforts

DSACO’s New Grassroots Advocacy Network

Earlier this year, DSACO established our first Public Policy Committee. The purpose and function of the Public Policy Committee is to heighten awareness regarding issues related to disability, educate and engage legislators on issues that impact the disability community, and grow grassroots support for relevant legislation.

At a recent meeting, the committee held a robust discussion of possible action items to help better engage DSACO members in advocacy efforts. It takes a village to accomplish change. We know that all of our families advocate for their loved one with Down syndrome in many ways. We also know that legislative advocacy is not everyone’s “cup of tea”. With that said, we often hear that many of our members – whether parents, grandparents, siblings, self-advocates, or friends – would get involved in legislative advocacy more often if they had just a little guidance.

DSACO has decided to take a few steps to help make getting involved at a grassroots level easier to do and easier to understand.

The first of these supports is to establish a means of identifying those members who would like to be made aware of relevant legislation and are open to being part of a grassroots effort to effect change. This core group will receive monthly e-blasts with updates on relevant legislation and possible action items. This group will also be given access to templates and scripts for communications (e-mail, letter, and phone) to legislators to use in response to action alerts regarding important issues that will impact the Down syndrome community. Members will be asked to complete a survey to determine their topic interests and their comfort zone regarding level of engagement with legislators. Members will choose how they want to be involved at any given time. This will help DSACO to better engage with members who are committed to following through with communicating with legislators about a specific bill at key times.

Are you interested? We hope so! DSACO members can “opt-in” to our new Grassroots Advocacy Network by visiting dsaco.net/advocacyinitiatives or by contacting Marge Barnheiser at mbarnheiser@dsaco.net.

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Resource & Activity Groups

D.A.D.S. GroupDads get a chance to get to know each other and learn a bit from one another in a social setting. The mission of D.A.D.S. is to assist and support, through fellowship and action, the fathers and families of individuals with Down syndrome.

MONDAY, OCTOBER 7, 2019 | 6:00 p.m.Miller’s Ale House | 1201 Olentangy River Rd. | Columbus

MONDAY, NOVEMBER 5, 2019 | 6:00 p.m.Miller’s Ale House | 1201 Olentangy River Rd. | Columbus

MONDAY, DECEMBER 2, 2019 | TIME TBDThe Scarlet Room | 2212 Tuttle Park Place, Suite 210 | Columbus

Group Contact:Brian Stumpo bstumpo@columbus.rr.com

To be added to the D.A.D.S. Group email list, please contact Brian at bstumpo@columbus.rr.com.

DSACO D.A.D.S.

M.O.M.S. Resource Groups (Mothers Offering Mothers Support)

WESTERVILLEJoin us on the 1st Thursday of the month at 6:30 p.m.October 3 | Rusty Bucket | 400 Polaris Parkway | WestervilleNovember 7 | BRU Burger | 691 N. Cleveland Ave. | WestervilleDecember 5 |Winking Lizard | 496 Polaris Parkway | WestervilleGroup Contact:Mandy Peterson mandy_6862@yahoo.com 740.501.8206

MARIONJoin us on the 2nd Saturday of the month at 7:00 p.m.El Campesino | 1834 Marion-Waldo Road | MarionGroup Contacts:Chelsea Johnson chelseamjohnson1217@gmail.comAshley Teets ashleyt@peacockwater.com

POWELLJoin us on the 2nd Tuesday of the month at 7:00 p.m.Gallo’s | 240 N. Liberty Street, Unit A | PowellGroup Contacts:Susie Jones susiejones429@yahoo.comKim Vega kimvega@gmail.com 617.512.3392

SOUTHEASTJoin us on the 2nd Wednesday of the month at 6:00 p.m.Red Robin | 1720 Hill Rd. N. | PickeringtonGroup Contact:Courtney Frost bcfrost816@yahoo.com 614.307.0232

SOUTHWESTJoin us on the 2nd Thursday of the month at 6:30 p.m.Local Cantina| 3937 Broadway | Grove CityGroup Contact:Dona Holmstrom dmhkmh@gmail.comJerica Brunstetter jericabrunstetter@gmail.com

NORTHWESTJoin us on the 3rd Tuesday of the month at 6:30 p.m.October 15 | Ten Pin Alley | 5499 Ten Pin Alley | HilliardNovember 19 | Rusty Bucket | 3901 Britton Pkwy. | HilliardDecember 17 | The Goat | 4265 Brooklands Dr. | HilliardGroup Contact:Liz Loehrer douearit@gmail.com 614.208.8426

CENTRALJoin us on the 3rd Thursday of the month at 6:30 p.m.Bexley Giant Eagle Market District (upstairs)2250 Main Street | BexleyGroup Contact:Angela Buddendeck cookieparty@yahoo.com 937.313.1306

DSACO MOMS If you are interested in being added to the M.O.M.S. Facebook group and receiving invites to the group get- togethers, please request at info@dsaco.net.

DSACO Moms have the opportunity to share stories, needs, concerns and ideas.

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Resource & Activity Groups

Little Buddies Parent Resource Group - WorthingtonParents of infants and toddlers ages 0-3 with Down syndrome welcome. Pizza and childcare will be provided.

Join us on the 4th Monday of the month from 6:30 - 8:30 p.m.Location unless otherwise indicated:

Worthington United Methodist Church600 High Street, Worthington

MONDAY, OCTOBER 28, 2019Jenny Gorman Speas, Special Education Advocate & Owner at Ohio Student Advocacy | Understanding the Special Education Process

MONDAY, NOVEMBER 25, 2019Dr. Jojo Strickler, D.S.S., Pediatric Dentist, Hilliard Pediatric Dentistry | Down Syndrome and Dental Health: What You Need to Know

DECEMBER - NO MEETING

Group Contacts:Jenny Gatchell jennygatchell@icloud.com 614.595.6195Carey Eash ceash@dsaco.net 614.315.7010

Little Buddies - Down Syndrome New Parent Support

Little Buddies Parent Resource Group - Grove CityParents of infants and toddlers ages 0-3 with Down syndrome welcome. Refreshments and childcare will be provided.

See you in 2020!

Weekend Play GroupInfants, toddlers & preschoolers with Down syndrome and siblings are welcome to attend.

Join us on the 2nd Saturday of the month from 10:00 a.m.-noon

SATURDAY, OCTOBER 12, 2019Miller County Gardens | 2488 State Rt. 37 W. | Delaware

SATURDAY, NOVEMBER 9, 2019We Rock the Spectrum | 1250 E. Powell Rd. | Lewis Center

DECEMBER - SEE YOU AT THE DSACO HOLIDAY PARTY

Group Contacts:Erin Peebles erinmpeebles@gmail.com 614.353.8026Kim Fryfogle kimberleyfryfogle@gmail.com 614.746.4201

Weekday Play GroupInfants, toddlers & preschoolers with Down syndrome and siblings are welcome to attend.

Join us on the 3rd Friday of the month from 10:00 a.m. - noon

FRIDAY, OCTOBER 18, 2019Fancyburg Park | 3375 Kioka Ave. | Upper Arlington

FRIDAY, NOVEMBER 15, 2019Bexley Public Library | 2411 E. Main Street | Columbus

FRIDAY, DECEMBER 20, 2019We Rock the Spectrum | 1250 E. Powell Rd. | Lewis Center

Group Contacts:Chrissy Bailey ctriskett@gmail.comBeth Gelfius bethbuckeye@msn.com

Page 152 0 1 9 Keeping Up | October - December 2019

Resource & Activity Groups

School-aged Social GroupSocial group for school-aged kids with Down syndrome, ages 5-12 years old.

SUNDAY, OCTOBER 27, 2019 | 2:00 - 4:00 P.M.DSACO Office | 510 E. North Broadway | Columbus

Join us for an afternoon of fun and education! Parents will learn from Melanie Slavens, a Registered Dietitian/Nutritionist with a Master’s of Science in Nutrition. She currently specializes in early childhood nutrition and works for the Franklin County Board of Developmental Disabilities as part of the Help Me Grow program. The kids will enjoy a magic show with special guest Magic Nate.

RSVP with the number of family members attending to Andrea or Mary by October 21, 2019.

Group Contacts:Andrea Bartosch andreabartosch@live.comMary Elliott columbuselliotts@gmail.com

DSACO School Aged Group

Southeast Play GroupChildren ages 8 and under with Down syndrome and siblings are welcome to attend.

Join us on the 3rd Saturday of the month from 10:30 a.m. - 12:00 p.m. unless otherwise indicated.

SATURDAY, OCTOBER 19, 2019 | 11:00 A.M.Get Air | 1075 Hill Rd. N. | Pickerington

SATURDAY, NOVEMBER 16, 2019Pickerington Library | 201 Opportunity Way | Pickerington

DECEMBER - SEE YOU AT THE DSACO HOLIDAY PARTY

Group Contacts:Renee Wolfe reneewolfe0812@gmail.com 740.412.0765Courtney Frost bcfrost816@gmail.com 614.307.0232

Southeast Playgroup - DSACO

Adult Stamping ClubThis social group works on paper crafting skills to create one-of-a-kind greeting cards to give to family and friends.

Join us on the first Wednesday of the month from 6 - 8 p.m. Location unless otherwise indicated:

Urban Coffee Meeting Room7838 Olentangy River Road, Columbus

WEDNESDAY, OCTOBER 2, 2019

WEDNESDAY, NOVEMBER 6, 2019

WEDNESDAY, DECEMBER 4, 2019

Group Contact:Sue Leppert sdlbuckeye@aol.com 614.354.0658

RSVP to Sue Leppert no later than a week prior to each session.

Upcoming EventsOCTOBER

Law Enforcement LowDOWNTuesday, October 8 | 6:00 - 7:30 p.m.Muskingum County Board of DD

Columbus Crew SC Soccer ClinicTuesday, October 8 | 6:00 - 8:00 p.m.MAPFRE Stadium

Trick or Treat with Hilliard PoliceSaturday, October 12 | 10:00 - 11:30 a.m.Hilliard Police Department

Pumpkins and Pickerington PoliceSunday, October 20 | 11:00 a.m. - 12:30 p.m.Pickerington Police Department

African American Outreach EventSunday, October 20 | 2:30 - 4:30 p.m.MLK Branch - Columbus Metropolitan Library

Hip Hop Fitness ClassSunday, October 27 | 4:30 - 5:30 p.m.Phlex Fitness

NOVEMBER

Down Syndrome Research SymposiumNovember 2 | 8:30 a.m. - 12:00 p.m.Marriott Columbus University Area

Down Syndrome Research WebinarWednesday, November 13 | 12:00 - 12:45 p.m.

New Parent BrunchSaturday, November 16 | 10:00 a.m.Mozart’s Cafe

Law Enforcement LowDOWNSunday, November 17 | Time TBDDelaware County Sheriff’s Office

DSACO’s Jump Start Swim ClinicNovember 18 - 22Goldfish Swim School - Lewis Center

DSACO Office Closed for ThanksgivingNovember 28 - 29

DECEMBER

DSACO Holiday PartySaturday, December 7 | 9:00 a.m. - 12:00 p.m.Star Lanes Polaris

DSACO Office Closed for HolidaysDecember 25 - January 1

The mission of the Down Syndrome Association of Central Ohio is to support families, promote community involvement and encourage a lifetime of opportunities for people with Down syndrome. Our vision is for people with Down syndrome to achieve their fullest potential in an accepting and inclusive community.

510 E. North BroadwayColumbus, OH 42314

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