Posts Tagged ‘Lettercase’

Moms Make a Difference!

June 10, 2013 in Blog, Book

We’re so excited to share that we reached our fundraising goal so that we can send copies of “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome” to all prenatal genetic counselors nationwide in July! We are so thrilled that one family who used both Lettercase and Down Syndrome Pregnancy launched this campaign, and we appreciate all of you who joined in this effort with your stories and your donations to make this happen. We’re also grateful to the National Society of Genetic Counselors for their support in providing us with the contact information for the genetic counselors, and we appreciate Woodbine House as they print our books! We’ll keep you posted via Facebook and Twitter and share photos of our mountain of books as we prepare for shipping.

Preparing for World Down Syndrome Day 3/21/2013

March 11, 2013 in Events, Resources

On March 21 (3/21), the Down syndrome community will be celebrating World Down Syndrome Day. This date is significant because it represents three copies of the 21st chromosome, and you can find out more at World Down Syndrome Day (international website). Some families take this opportunity to share information about Down syndrome with their local communities, schools, churches, doctors, or friends and family. Ideas include offering presentations, sharing materials about Down syndrome, posting links on social media, or enjoying reading a new blog — whatever is most comfortable.

School presentations: Down Syndrome Pregnancy offers a range of presentations for schools that can be helpful in preparing older siblings and their friends for the birth of a baby with Down syndrome.

Medical Presentation: Down Syndrome Pregnancy also offers a short 15-30 minute presentation for volunteers to share with medical providers on the best practices for delivering a Down syndrome diagnosis.

Prenatal Down Syndrome Resources: While all of our materials are available for free, some expectant parents like to make sure that their medical providers have printed resources on hand in case another family in the office receives a diagnosis of Down syndrome. You can order print copies of “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome” and “Your Loved One is Having a Baby with Down Syndrome” from Woodbine House, and you can order “Understanding a Down Syndrome Diagnosis” and “Delivering a Down Syndrome Diagnosis” from Lettercase.

Blogs:

You can also see a range of blogs that have a positive connection to Down syndrome at Down Syndrome Blogs by the T21 Writer’s Alliance. The blogs are organized by category so that you can select which blogs would be most interesting to you.

Video and Social Media:

In the past few months, the Down Syndrome Guild of Greater Kansas City has released a wonderful short film featuring people with Down syndrome and their friends discussing Down syndrome, friendship, and proper language. This is another great tool to share with friends and classrooms to introduce Down syndrome:

The International Down Syndrome Coalition also shared a World Down Syndrome Day video this past week that features images of people with Down syndrome and features the song “Who I Am” written and sung by Sarah Conant.

Materials in Spanish

February 1, 2013 in Resources, Spanish, Support


For our Spanish-speaking expectant parents, and for relatives who speak Spanish, there are a variety of Spanish language materials and resources:

The Lettercase booklets have both English and Spanish text:
http://lettercase.org/

Recently this website was recommended by a group leader: http://www.down21.org/web_n/index.php?option=com_content&view=section&id=8&Itemid=37

Another resource is Brighter Tomorrows – materials are available in both English and Spanish:
http://www.brightertomorrows.org/

Also, the NDSS has information in Spanish:
http://esp.ndss.org/index.php

The NDSC has information in Spanish as well:
http://www.ndsccenter.org/espanol/

Additionally, there are a lot of Down syndrome groups in many Spanish speaking countries. Families may find it useful to take a look at the Gifts website for websites of groups in their countries of origin (countries listed alphabetically):
http://giftsds.segullah.org/down-syndrome-links/international-links/

“Babies with Down Syndrome” is available in Spanish:
http://www.woodbinehouse.com/main.asp_Q_product_id_E_978-1-890627-99-7_A_.asp

Canal Down21.org

Revista Síndrome de Down

Libro de lectura y escritura

“Síndrome de Down: Vida adulta”

Down Syndrome Pregnancy News and Gratitude

October 31, 2012 in Blog, News

Stephanie Meredith (left), Nancy Iannone (middle), and Heather Trammell (right)

For the past two years, Down Syndrome Pregnancy has operated as an independent 501(c)(3) charity serving expectant parents nationwide under the wonderful guidance of Nancy McCrea Iannone as the Executive Director. Nancy has been unfailingly generous, kind, and dedicated in this work—along with the amazing Down Syndrome Pregnancy Board of Trustees: Melissa Kline Skavlem, Amy Geoffrey, Sarah Hartway, Heather Trammell, Kelle Hampton, and Lisa Cape Lilienthal. Under their leadership, this work has grown to support over 75,000 online visitors in the past two years, and nearly 3300 copies of the booklet, “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome,” have been distributed nationwide.

Given the success and responsibility of this effort, Down Syndrome Pregnancy is now being absorbed by the University of Kentucky’s Human Development Institute (HDI), which currently administers both Brighter Tomorrows (an online resource for new and expectant parents) and the Kennedy Foundation’s nationally recommended diagnosis booklet, “Understanding a Down Syndrome Diagnosis.” Together, all of these resources will complement each other to provide comprehensive support for new and expectant parents nationwide.

Missy, Nancy, and Amy will continue to moderate the BabyCenter Down Syndrome Pregnancy board, and they will continue to provide guidance and consultation for the Down Syndrome Pregnancy website and resources. However, the program will now have the additional support of HDI as a distinguished University Center for Excellence in Developmental Disabilities, and the website will be managed by Stephanie Meredith, the Medical Outreach Director at HDI, who has also been part of Down Syndrome Pregnancy from the beginning as the co-author with Nancy of “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome.”

Please take a moment to share what Down Syndrome Pregnancy has meant to you over the past two years, and please also consider making a donation today so that we can continue growing the program to help more and more expectant parents.

AP story on new prenatal testing; DSP mentioned

June 15, 2011 in Blog, Book, Medical Provider, News, Resources

This week AP reporter Malcolm Ritter wrote a thoughtful story on the upcoming non-invasive diagnostic prenatal testing and the related ethical concerns. Mr. Ritter quoted our own Nancy McCrea Iannone, and mentioned Down Syndrome Pregnancy as a resource for those planning to deliver a baby with Down syndrome. Ethical concerns of various experts, including Dr. Skotko, were explored, and for our expectant parents ready to learn more about these issues it is worth reading.

Particularly insightful was the reporter’s choice to open and close the story with the personal experience of Down Syndrome Pregnancy “graduate” Erin Witkowski. While the larger ethical concerns are important for us as a society, Erin’s story illustrates that, at heart, testing choices are very personal, and influence the “story” of each and every family. We respect the individuality of each family’s path and are proud to serve those families who have joined the Down syndrome community in the prenatal stage.

As we contemplate ethical issues, it is imperative that we applaud the efforts and successes of those involved in ensuring that every expectant couple receiving a diagnosis also receive up-to-date, unbiased, and medically approved information. We urge all stakeholders in prenatal testing to embrace the diagnosis booklets authored by Stephanie Meredith and distributed through Lettercase. A product of the historic “consensus group,” the Lettercase booklets received approval from representatives of the national Down syndrome groups and many major medical groups. These booklets are the gold standard for prenatal Down syndrome diagnosis, and anyone invested in informed decision-making should support these booklets.

Down Syndrome Pregnancy, Inc. provides that vital second stage of support, ensuring that those expectant couples choosing to welcome a child with Down syndrome have as much information and support as possible.

AP story HERE
Lettercase website HERE
Dr. Skotko’s website HERE
Community member reaction HERE

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