DS Pregnancy Book & Website Launched

Tue, October 05, 2010 10:53 AM | Anonymous member (Administrator)


Affiliates in Action is excited to announce an amazing new resource for Down syndrome affiliates across the country.  When DSAIA was created over four years ago, the hope was that bringing group leaders together would generate reliable resources and reduce duplication of effort.  Many of you have asked for accurate, quality products at low cost, especially in the area of new parent support.


Through AIA's Informed Decision Making Task Force (IDM-TF), every month chairperson Mark Leach hosts meetings with the experts in the area of prenatal support.  Through these discussions, an idea which started last summer grew into a plan. It then finally blossomed into a unique group, a ground-breaking book, and an extremely useful resource for groups across the country.


The majority of the Trustees of Down Syndrome Pregnancy, Inc. are members of DSAIA's IDM-TF, including the two authors of Diagnosis to Delivery: A Pregnant Mother's Guide to Down Syndrome.  This new organization and its materials will not replace the great work that affiliates do at a local level.  Instead, the website and the book will supplement your work with a very accessible national program.


Down Syndrome Pregnancy, Inc. is a New Jersey non-profit corporation whose purpose is to provide information and support to expectant parents waiting for the birth  of a baby with a diagnosis or increased chance of Down syndrome.  The organization was created to help expectant parents, and also to help the Down syndrome community prepare for the increasing numbers of prenatally diagnosed parents as new, non-invasive diagnostic prenatal testing for Down syndrome becomes available next year.


The website will include the following free resources:

1) The book Diagnosis to Delivery: A Pregnant Mother's Guide to Down Syndrome by  Stephanie Hall Meredith and Nancy McCrea Iannone.  A team of highly-qualified medical professionals has reviewed and provided feedback so that they could craft a reliable,

accurate resource.   The book features amazing photography donated by world-known

photographers Kelle Hampton and Conny Wenk.

2) A moderated blog with commentary.

3) Sample e-mails for pregnant moms to copy.

4) Many other resources under construction, including five booklets for expectant parents.

All of the materials are geared to non-political, honest, compassionate and informative support for those in post-diagnosis pregnancy or waiting until birth for a confirmed diagnosis.  Visit the website, download the book for free, and consider a donation - what a wonderful way to kick off Down syndrome awareness month!  Visit the website today at www.downsyndromepregnancy.orgCongratulations to Down Syndrome Pregnancy, Inc., for this much-needed resource.



Wisconsin Upside Down Moves the Chains


DSAIA Member Forms Partnership to Raise Money and Awareness

DSAIA member organization Wisconsin Upside Down has partnered with Packer Radio to begin their First Downs for Down Syndrome Program.  "I learned about First Downs for Down Syndrome at the first AIA conference that I attended in Phoenix a few years ago," explained Robbin Lyons, president of Wisconsin Upside Down.  However, this  pairing is organized a little differently than other First Downs programs in that the collaboration is done through the Packer Radio Network rather than the team itself.  It's a quite simple arrangement.  Before the game begins, an ad is aired announcing the program and its sponsor (United Healthcare) and explaining that $25 will be donated by the sponsor for each first down attained by Green Bay during the game.  A total is given at the end of the game and the program (and outcome)  is also reported during the next day's news on the station.  In addition, free tickets have been given to the group.


Lyons reported that in the first three games, the organization had already received $1,500. "We estimate that we could possibly receive $10,000 in donations from the program in the first year," said Lyons. The radio stations where the Packer Radio Network is housed worked with Wisconsin Upside Down to find a sponsor for the program.


 "It took us a year to find the right client/sponsor," said Lyons. "When the radio network contacted us with the possibility of United Healthcare sponsoring the program, I used training I got through DSAIA and discussed our membership in the organization with them.  They liked the fact that though we were a young organization, we had  access to such a wealth of training and programming. It definitely helped them to say yes to us!"

However, translating the program into an awareness vehicle was the greatest outcome of the program.  "The station has added our PSA to their lineup and our membership has seen a big spike," Lyons shared.  "We were getting one or two new members a month.  However, in the first week of the program we had five new members join.  In the first few weeks we had more than double that.  We have seen substantial increases in hits to our website. It's definitely a win-win!"



Down Syndrome Indiana Joins Trade Association


Down Syndrome Affiliates in Action is proud to welcome Down Syndrome Indiana into its membership.  DSI has been a repeat attendee at DSAIA conferences, offering incredible breakout sessions on topics like Diversity Outreach.  The organization serves a membership of over 1,600 individuals with programs and services ranging from New Parent Outreach to a tremendous Self-Advocate program.  Down Syndrome Indiana's executive director, Lisa Tokarz-Gutierrez, has already made plans to share her

valuable expertise to other DSAIA members when she and Sarah Cullen of the Massachusetts Down Syndrome Congress team up to present a webinar on Diversity Outreach in November. "I am very excited about the repository and have encouraged all my staff to use it, use it, use it!!!!," Tokarz-Gutierrez said. "DSAIA and its leadership have also been a huge resource and source of support and advice for me."


Joining DSAIA was a decision made by the DSI Board of Directors to continue to improve the organization, share valuable resources and save the organization dollars along the way.  Rob Morgan, DSI Board Treasurer, summed up one aspect of membership with a very succinct response to DSAIA President Joe Meares:  "I learned last night that the DSI membership to AIA was more than paid for by savings we will realized on Buddy Walk shirts.  Why didn't you tell us this in the first place!!!  This would

have saved hours of presentations and board dip!"



D.A.D.S. Work To Get 'Dads' Involved


Members of D.A.D.S. and DSAIA will be presenting on the National Down Syndrome Society's Monthly Affiliate Webinar on Policy Education for Fathers, scheduled for Tuesday, November 23rd at 12:00 pm Eastern.  Joe Meares, founder of D.A.D.S. and president of DSAIA, will present along with Steve Beck and Tom Milvert.  Beck is Vice-President of DSA of Northern Virginia and Milvert is a board member of Down Syndrome Indiana and leader of the Indiana GAC.  Both are also members of D.A.D.S. (Dads Appreciating

 Down Syndrome).  "NDSS is so pleased to host guest speakers from D.A.D.S. for the November Monthly Affiliate Webinar," said Beth Finkelstein, NDSS Director of Community Relations.


Meares explains the need behind this presentation, "Since May, I realized I'd asked the question, "Who knows anything about the ABLE Bill" to 250 fathers. SEVEN men  raised their hands, LESS THAN 3%!  I immediately had the idea for this webinar.  I don't think this alone will address the problem of our community's policy agenda getting into the hands of parents and I don't think it alone will become a trigger for action. But, I open every D.A.D.S. presentation with this comment: 'The attitude of the father becomes the attitude of the family'."  Meares sees tremendous value in a "Policy 101" for fathers.  "Especially with D.A.D.S. groups," he says, "I see policy as a great action piece.  And in a functional bucket model, policy absolutely

should resonate with fathers once the basics are outlined.  An example of the functional bucket model: Traditionally, 529 plans or other college savings vehicles fit in a fathers "bucket". Fathers in our community have to know about the ABLE bill and have to know about the explosion of post secondary educational opportunities available for our children."


Steve Beck is no stranger to policy issues.  He has spent countless hours working on getting the ABLE  Bill the support it needs to pass.  "Fathers are not very involved because it is not something they see as tangible they can affect," says Beck.  "But most laws passed in Washington DC need to be implemented at the state and local levels.  And advocacy at these levels is just as critical as at the national level."


During the webinar, the Kennedy Brownback Law, ABLE, IDEA, NCLB, Restraint and Seclusion, and Higher Education bills will all be addressed.  "I'd like to see fathers attending this webinar truly understand how these laws/bills directly affect our community and our children and how Dads can get involved," Beck said. The goal, according to Meares, is to have at least 100 fathers on the call.  And  he reminds organizations that everyone is welcome.  Whether your organization has a D.A.D.S. chapter or not, he hopes that groups all over the country will encourage their fathers in their organization to join the webinar. Past webinars can be viewed by visiting the NDSS website.




DS Community Loses Treasured Advocate


Lori Tullos Barta, 39, the 2008-2009 President of the Down Syndrome Association of Central Texas (DSACT), passed away due to complications following heart surgery in August. Lori was not only a extraordinary advocate for people with Down syndrome, but also a loving parent to three girls (one with DS).


She was instrumental in creating a variety of programs for DSACT including their Learning Program, Inclusive Congregational Initiative and Medical Outreach program.  Lori presented on DSACT's Inclusive Congregational

Initiative at the 2009 DSAIA conference.  Most recently, Lori was helping coordinate the Texas affiliates support for NDSC's booth at the annual conference for the National Society of Genetics Counselors.


Those who wish to give in Lori's memory can visit the DSACT homepage for more information at



Buddy Walk on Washington


NDSS Announces Date and Registration for Annual Event

The Buddy Walk on Washington has been scheduled for February 7-8, 2011.  NDSS hopes that the event will send a strong message from the Down syndrome community about  important national policy goals, including improvement for education, research,  healthcare and more.  Attendees can expect to meet and create positive relationships with policy makers, educate elected officials about the strengths and needs of their constituents with Down syndrome, and connect with other Down syndrome advocates

from around the country while learning new strategies for successful advocacy. 


To register or learn more, visit the NDSS website.



Cincinnati Creates New Brand for Adoption Program


The DSAGC's program to give information and support and help connect families who release their child with Down syndrome to those who want to adopt a child with Down syndrome has been in existence since the early 1980's.   Now, because of a generous grant from Penn Station and Pepsi, the program is getting an upgrade in its name, logo and tagline while still doing the same good work it always has. As of October 2010, in honor of Down Syndrome Awareness Month, the new name will be the "National Down Syndrome Adoption Network" with a tagline of "planning for a loving future."


"Because 95% of families are out of the DSAGC's nine county area of service, it has always served families across the country but now, it's going to look more like a national program" comments Janet Gora, Executive Director of the DSAGC  "With proper funding and supports, I could envision this program to spin off on its own in the coming years."


The expansion of the NDSAN also includes greater use of technology, online information and marketing.  In the next year, the Down syndrome community and the doctors that work with families should start seeing more materials from NDSAN explaining the program and offering help free of charge. The expansion efforts are led by a Steering Committee of local professionals including those who have adopted a child with Down syndrome through Robin Steele, the Director of NDSAN.


The look of the program may have changed, but the mission of NDSAN stays the same:to ensure that every child with Down syndrome is raised in a loving, caring home. For more information or to help support the expansion efforts, please contact Janet Gora, Executive Director of the DSAGC at



Star-Studded Event Celebrates Down Syndrome


Be Beautiful, Be Yourself was the theme of the annual JetSet Fashion Show held in Denver, Colorado on Saturday, October 2, 2010.  Hollywood stars Jamie Foxx, Quincy Jones and "Survivor" host Jeff Probst joined Denver Nuggets star Chauncey Billups and Mayor John Hickenlooper for the star-studded event aimed at raising money for the Global Down Syndrome Foundation, benefiting the Linda Crnic Institute for Down Syndrome.


Foxx escorted his little sister DeOndra Dixon, who has Down syndrome to the event. Dixon was there to walk the runway in fashions from Saks Fifth Avenue, and to present the Quincy Jones Exceptional Advocacy Award she won in 2009 to the 2010 winner, Karen Gaffney. Chairman and CEO of the Special Olympics Timothy Shriver was honored as well with the 2010 Quincy Jones Exceptional Advocacy Award, and musician Eric  Hutchinson closed out the night with songs from his debut album "Sounds Like This."


The money raised - $1.45 million gross - at this dinner and fashion show attended by the above folks and more than 1,200 other supporters goes to the Global Down Syndrome Foundation for its support of the Linda Crnic Institute.  It is believed to be the largest single fundraiser for Down syndrome.  Michelle Sie Whitten, executive director of the foundation and mother to Sophia (6 years old with Down syndrome), is a former presenter at the annual DSAIA conference.  DSAIA board members Amy Allison

(DSGKC) and Amy Van Bergen (DSACF) were on hand to volunteer for the event.

I want to tell you what WONDERFUL time I had at the conference. I learned so much and came away with lots of ideas for our organization. -Barb Waddle, The Upside of Downs of Northeast Ohio


Down Syndrome Affiliates in Action started as a conference bringing together outstanding leadership from Down syndrome organizations around the country. Learn More

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