Group leaders, please share with our expectant parents some information about your group, and contact information so that our expectant moms know whom to contact. What kind of supports or resources do you have for expectant parents? Do you have any events coming up? Let’s have a shout out from our favorite groups! Let our expectant parents know they are a part of our community, not just in cyberspace but in real life too.
Tags: down syndrome, down syndrome affiliate, down syndrome pregnancy, downsyndromepregnancy.org, local down syndrome group, prenatal support
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- You can make an online donation by credit card, and you will be directed to the University of Kentucky Office of Development. All donations are tax-deductible and receive an acknowledgement letter, which also serves for tax purposes.
- Click here to purchase a printed version of "Diagnosis to Delivery" from Woodbine House for $15 or "Your Loved One is Having a Baby with Down Syndrome" for $8.
We provide a free downloadable practical guide for expectant moms, Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome. We also host an interactive blog, which gives expectant parents a place to ask questions, voice concerns, and receive feedback.
We offer support to expectant parents who have received a prenatal Down syndrome diagnosis and are moving forward with their pregnancy. For expectant parents first learning about a diagnosis, please refer to your medical provider and Understanding a Down Syndrome Diagnosis distributed by Lettercase.org.
Please be advised that we are not medical professionals. All decisions about your care should be fully discussed with your medical care provider. This book is a resource and not a substitute for good quality medical care and advice.
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Local Down syndrome Organizations
Find your local Down syndrome organization with the National Down Syndrome Society (NDSS) Affiliate Finder. Just enter your location to find one near you.
I will start by taking off my “Down Syndrome Pregnancy” hat and putting on my local hat. I am the mom’s outreach coordinator for “KIIDS” (Knowledge and Information about Individuals with Down Syndrome), which is located in Southern New Jersey.
http://www.kiids.info/index.html
On behalf of all of our families and friends of the Down Syndrome Association of Greater Cincinnati, we welcome all you prenatally diagnosed moms. We would love to talk to you about your experience and help in any way we can. Martha, who is the staff that you would be talking to, is a grandma of Jason who has Down syndrome. Martha has talked with hundred of moms, dads, grandparents, siblings and friends about what you’re going through and is a HUGE HELP! So contact us. 513.761.5400. Looking forward to meeting you and your beautiful baby,
Janet
Exec Dir of the DSAGC
Hello! Our group is in the beginning stages as of this month. We started out as a group of moms reaching out to each other on this journey. We saw the need to reach others here in our community and nearby communities. I am the mother of a child with Down syndrome. The co-manager of our group blog is also the mother of a child with Down syndrome. We are here to help answer questions and provide support in any way possible to expectant or new parents. You can visit us at our website to contact us. It would be our pleasure to get to know you!
Down Syndrome of Louisville provides free life long educational programming for individuals with Down syndrome and their family members. This summer, we will open our state-of-the-art, brand-new, 18,000 sq. ft. facility to meet the demand for our services. The best information I received about Down syndrome when our daughter was born was from the home visit by DSL’s executive director, Diana Merzweiler and a parent volunteer. We then enjoyed weekly group play sessions and regular new parent meetings where we met other parents of new and expectant children. Feel free to contact DSL at 502.495.5088 or e-mail info@downsyndromeoflouisville.org. DSL is here for the entire lifetime of your child.
CONGRATULATIONS on your baby to be! The Down Syndrome Guild of Greater Kansas City serves over 1100 families in 37 counties in KS and MO. We work regularly with prenatally diagnosed couples and understand you may have some questions and concerns. We invite you to contact DSG so we can provide you a welcome basket full of resources, match you to other prenatally diagnosed couples and offer support through the remainder of your pregnancy. We look forward to welcoming your baby soon and serving your family for years to come.
Amy Allison
Executive Director
Down Syndrome Guild
of Greater Kansas City
amy@kcdsg.org
http://www.kcdsg.org
913-384-4848
Welcome from the Sunshine State! If you live anywhere in Florida, you have more than 20 DS support groups to turn to for local info and support…no matter what part of the state you live in…from Miami to the Panhandle and everywhere in between. If you need help finding your closest one, please feel free to email or call us.
The Down Syndrome Association of Central Florida (covering the metro-Orlando area and 7 surrounding counties) hosts the annual Florida Down Syndrome Conference: Learning with Families, Professionals and Advocates as well as many other events that you might want to avail yourself of.
First and foremost though, we have trained parent mentors who have been exactly where you are right now, so if you would like to connect with someone a little closer to home, I invite you to contact me (yes, I am a mom of a son with Down syndrome, too.) We also provide new parent information packets, books and DVDs to help you get started on this journey.
We have over 900 families in the area that we serve and support, including many who are diagnosed prenatally and we have a great DADS group that offers connections and support, too, unique to fathers (well, actually, they call themselves an “action group”–not a support group.)
You can learn more about our many programs and services throughout the year by visiting our website or facebook page.
Congratulations and we look forward to serving you and your family in the years to come.
Amy Van Bergen
Executive Director
Down Syndrome Association of Central Florida
204 N. Wymore Road
Winter Park, FL 32789
407-478-5621 407-619-3862 CELL
407-478-5698 FAX
http://www.dsacf.org
Congratulations on your coming baby and welcome to the Down Syndrome Partnership of Tarrant County! We offer New Parent Packets free of charge and also have Mom’s Night Out and DADS (Dads Appreciating Down Syndrome) groups that you are welcome to participate in even though your child has not yet arrived. If you would like to speak to the parent of a child with Down syndrome one-on-one, we can put you in touch with one of our members. Though “Tarrant County” is in our name, we serve families in surrounding counties including Denton, Johnson, Hood, Parker, and Wise, and even beyond. If you are in the area and need to connect, please contact us!
Jennifer Mearns
Down Syndrome Partnership of Tarrant County (Ft. Worth-Arlington and surrounding areas)
jennifer@dsptc.org
http://www.dsptc.org
817-390-2970
Congratulations on your baby and welcome to The Up Side of Downs of Northeast Ohio! We want you to know that you are not alone in your journey and we have almost 1000 families in the area that we serve that have experienced what you are experiencing right now. We know that it can be an overwhelming time, but we are here to offer support and hope.
We have a packet of information about Down syndrome and about our group that we would be happy to send to you, free of charge. Please contact me at lauriek@usod.org or you can call me at 216-702-3820. I would be happy to talk to you over the phone and/or match you up with a family in your area.
We have many things to offer in our group, such as Baby and Toddler groups in four locations, Mom’s Nights Out, New Parent Welcome Day in October, monthly education series and our Buddy Walk in August.
Please feel free to email or call, whatever is most comfortable and we look forward to hearing from you.
Laurie Kowalski
New Parent Support Coordinator
The Up Side of Downs
lauriek@usod.org
http://www.usod.org
216-702-3820
Congratulations! We would love to be a resource for you on your path to becoming parents! Through our Information & Referral Center, we operate a toll-free Helpline (800-221-4602) and e-mail service (info@ndss.org). Trained representatives respond to calls in English and Spanish from 9AM to 5PM Eastern Time, Monday-Friday.
Another great resource is NDSS’ site, http://www.ndss.org. Visit the New and Expectant Parent Section on the left side of the homepage. Download our new and expectant parent guide, A Promising Future Together, or we’d be happy to mail you a copy. Please call our toll-free Helpline or e-mail us at info@ndss.org with your address.
If you’re looking to speak with someone locally, NDSS has over 350 affiliate groups across the country, consisting of local parent support groups and other organizations that provide services to the Down syndrome community. Find your local affiliate by clicking the map on the right side of our homepage.
NDSS has ongoing programs year-round! Check out the initiatives of our Policy Center on our website, and visit http://www.buddywalk.org to learn more about the national Buddy Walk® program and to find a Walk in your area. Visit the My Great Story public awareness campaign at http://www.ndss.org/stories to read inspirational stories by self-advocates and their family members, friends, teachers, coworkers and many others. The My Great Story campaign is a wonderful way to share in other families’ experiences.
We look forward to getting to know you along this journey!
Vanessa Quick
Information and Referral Specialist
National Down Syndrome Society
vquick@ndss.org
http://www.ndss.org
212-763-4364
Congratulations on your expectant new arrival. We are a fairly new support group in the Heart of Texas. We are working on a new parent packet that we would love to share with new parents. We are here to support families in this new and wonderful journey.
The Down Syndrome Association of Northern Virginia is an active parent network and we are glad to support new and expectant parents in multiple ways. Please feel free to get in touch!
Heather A. Trammell
Director of Parent Support
DSANV
parenttoparent@dsanv.org
703-621-7129
http://www.dsanv.org