Over the course of the last couple of months, Down syndrome affiliates have reached out on a national level to medical providers (ahead of the Sequenom test) by exhibiting at American College of Obstetricians and Gynecologists (ACOG) conferences across the United States. Groups coordinated efforts and funding to exhibit at conferences in Kansas City (MO), Plano (TX), Naples (FL), Philadelphia (PA), and Detroit (MI). The exhibitors were able to distribute Understanding a Down Syndrome Diagnosis booklet, Delivering a Down Syndrome Diagnosis booklet, downsyndromepregnancy.org flyers, Brighter Tomorrows flyers, National Down Syndrome Adoption Network flyers, and other timely information such as articles on the latest in Down syndrome research.
"My favorite phrase was 'I did not know that!", related Rosa Rocha of DSA of Houston. " I kept hearing it over and over again as attendees learned of all the great available resources for them and their patients." Nancy Iannone (downsyndromepregnancy.org) remarked that conversations with doctors at their booth were 'wonderful'. Likewise, Amy Van Bergen of DSA of Central Florida reported that she heard comments such as "We don't usually see you here at these events...so glad you are" and "Thank you for being here". A couple of the exhibiting groups even had an opportunity to have a discussion with representatives of Sequenom. DSAIA worked with several individuals (including Stephanie Meredith, Mark Leach of DS-Louisville and Nancy Iannone of downsyndromepregnancy.org) to create a "training" webinar to assist groups on being effective exhibitors as they participated in the conferences.
Affiliates and other organizations that participated in the effort are listed below:
Bringing Up Down Syndrome - Southern New Jersey
Celebrate Down Syndrome
Children's Hospital Philadelphia T21 Program
Down Syndrome Association for Families
Down Syndrome Association of Austin
Down Syndrome Association of Central Florida
Down Syndrome Association of Central Oklahoma
Down Syndrome Association of Delaware
Down Syndrome Association of Houston
Down Syndrome Association of Memphis & MidSouth
Down Syndrome Association of West Michigan
Down Syndrome Guild of Greater Kansas City
Down Syndrome Guild of Southeast Michigan
Down Syndrome Indiana
Down Syndrome Pregnancy
Down Syndrome Society of Wichita
Greater Clear Lake Families Exploring Down Syndrome
Knowledge & Information About Individuals with Down Syndrome
National Down Syndrome SocietyNetwork 21 - Central New Jersey
Red River Valley Down Syndrome Society
Major news was announced this week of a new prenatal test for Down syndrome that will impact our community. In response, DSAIA shared a resource with our members including a member communication and press release. DSAIA encouraged organizations to issue a similar press release to their local communities and membership, tailored to reflect their organization's capabilities. One capability that every DSAIA member has is access to the Repository which holds the tools for effective, responsible medical outreach. Should you have questions or need further information, please contact DSAIA Board Member Mark Leach, chair of DSAIA's Informed Decision Making Task Force. Mark can be reached at 502.938.4864 (c) or by e-mail at email@example.com. If you are a DSAIA member and did not receive the communication, please contact DSAIA Executive Director Deanna Tharpe at firstname.lastname@example.org or 701.425.7129.
Cincinnati Celebrates 30 Years at their Annual Buddy Walk
On September 10th, the Down Syndrome Association of Greater Cincinnati celebrated individuals with Down syndrome at their annual Buddy Walk while also celebrating thirty years as an organization. According to Janet Gora, DSAGC Executive Director, several of the founders were present to lead the walk and also were featured in the "Founders' Tent" where families could visit with them about the early days of the organization and view an organizational timeline. "Most of the founders are still involved with the organization," Gora said.
This year's DSAGC walk brought approximately 10,500 people out. Gora explained that along with the 30th AnniversaryCelebration, they also increased the number of fundraising teams recognized from ten to thirty this year. On the Friday after the walk, eight Buddy Walk committee members (some self-advocates) visited their major sponsors personally to deliver a special piece of artwork, Buddy Walk shirts, candy and other gifts. "We hand-delivered the gifts to thank our sponsors and to plant the seeds for their continued support next year," said Gora.
DSAIA invites you to share your walk stories (and lessons learned) with us so that we may collect these experiences to share with others.
Down Syndrome Consortium Holds Inaugural Meeting
Pictured here: Deanna Tharpe (DSAIA), Michael Harpold (DSRTF), Jon Colman (NDSS), David Tolleson (NDSC), Michelle Livingston (GDSF), Bob Schoen (Research DS)
The National Institute of Health has joined with organizations interested in Down syndrome to form a consortium that will foster the exchange of information on biomedical and biobehavioral research on the chromosonal condition. The inaugural meeting of this group was held on the NIH campus on September 29 with members of the NIH Down Syndrome Working Group and representatives from prominent Down syndrome and pediatric organizations.
"The idea is to have an open channel of communication
between the NIH and those organizations intimately involved with Down syndrome," said Yvonne T. Maddox, deputy director of the NIH's Eunice Kennedy Shriver National Institute of Child Health and Human Development, the agency that will chair the new consortium. "The consortium will allow NIH to inform the Down syndrome community of advances in the field, ongoing studies, and potential avenues for future research. In turn, those who work in Down syndrome research and patient care can share their experiences and ideas for potential research opportunities with NIH."
A focus of the consortium will be the implementation of the NIH Down syndrome research plan. The consortium will meet two to three times a year.
Is Your Group Ready to Celebrate?
Down Syndrome Awareness Month is here! As your organization begins to celebrate, are you still searching for new, exciting (additional and easy) ways to promote awareness of Down syndrome in your community? DSAIA invites you to watch the DS Awareness Day/Month Ideas webinar which is located in the DSAIA Repository. The webinar (recorded last year) features Janet Gora of DSA of Greater Cincinnati and Mark Leach of Down Syndrome Louisville and explores 21 low-cost and 21 no-cost ideas for promoting awareness locally.
In addition to the webinar, DSAIA members will also find a number of items in the Repository under Awareness Materials. Visit the Events/Fundraising section to find both templates and ready-to-print materials. Be sure and send us your stories about your own awareness activities so that we can share your success (and great ideas) with others!
New Study on Down Syndrome Shows Positive Attitudes
Three studies have just been published in the American Journal of Medical Genetics regarding attitudes of family members and individuals with Down syndrome. Brian Skotko, Sue Levine and Rick Goldstein reported feedback from 2,044 parents/guardians, 822 brothers/sisters, and 284 people with Down syndrome around the country reported that Down syndrome is far more positive than many healthcare professionals describe. Followng is a short list of results:
As you know, international discussion is mounting over the forthcoming noninvasive prenatal tests for Down syndrome. The Down syndrome community has been dedicated to providing accurate, up-to-date information about Down syndrome for expectant parents. Now, we have the largest and most comprehensive information to share about Down syndrome. Read more about how your organization can utilize this information. You can read the complete results of the study here.
DSAIA 2012 Registration To Open Soon
Make your plans now to attend the 2012 DSAIA Annual Leadership Conference which will be held in Washington, D.C. February 29-March 3. The event is planned in conjunction with NDSS' Buddy Walk on Washington. Event attendees who register for the DSAIA conference will automatically be registered for the NDSS activities as well! This partnership will allow Down syndrome leaders to participate in both the Day on the Hill advocacy event and important leadership training.
Visit the Conference section of the DSAIA website to learn more about registration options, sponsorship opportunities and speakers. Registration officially opens October 15th with discounts for DSAIA members and early registration.
Three studies have just been published in the American Journal of Medical Genetics regarding attitudes of family members. Brian Skotko, Sue Levine and Rick Goldstein reported feedback from 2,044 parents/guardians, 822 brothers/sisters, and 284 people with Down syndrome around the country reported that Down syndrome is far more positive than many healthcare professionals describe. Followng is a short list of results:
As you know, international discussion is mounting over the forthcoming noninvasive prenatal tests for Down syndrome. The Down syndrome community has been dedicated to providing accurate, up-to-date information about Down syndrome for expectant parents. Now, we have the largest and most comprehensive information to share about Down syndrome. Read more about how your organization can utilize this information.
What can you do now?
1. Download this press release regarding these articles. Please feel free to use this information in your communications to your members.
2. Contact your local media. These studies present a unique opportunity for your organization to share the real stories with your local reporters. Finding families whose stories resonate with the reported statistics is a wonderful way to generate local media attention. Please consider forwarding the attached press release to your media contacts.
3. Share the research. The journal has kindly made the articles accessible to everyone, even those who do not have a subscription. Please feel free to direct your members to the following links:
4. Contact your local physicians. Now you have the research to help secure meaningful meetings with your area physicians. Send the journal articles to your local obstetricians, geneticists, genetic counselors, midwives, neonatologists, and pediatricians. And, then ask them if you could meet with them to tell them more about your group. Ask about opportunities for your families to present their stories at Grand Rounds or other healthcare gatherings.
5. Contact your local medical, nursing, and genetic counseling schools. Ask if you could sponsor a "journal club" where students discuss the papers, and you bring along family members and self-advocates to add their perspectives.
6. Legislative efforts. Please feel free to reference the work in any legislative efforts that are targeted toward improving the lives of people with down syndrome.
Affiliate Brings Smart Start Home To Tennessee Families
The Down Syndrome Association of Middle Tennessee attended a session hosted by the DSG of Greater Kansas City at the 2011 DSAIA conference where they shared information on the Smart Start Pre-K Program developed and rolled out in 2010. "I brought the information back and presented it to the Executive Committee," explained Sheila Moore, DSAMT Executive Director. "They took immediate action to get it started including adding it to the current year's budget."
Board member Meghan Burke, a Special Education instructor and sister of an individual with Down syndrome, began the job of organizing the program. The program has met with great response from families and is already at full capacity. DSAMT was able to access all the materials DSG uploaded to the repository and launch the program immediately to help their members. "Having the materials to begin the program made it easy to go from an idea in February to a program implemented by September," said Moore. DSAMT is adept at utilizing ideas from DSAIA's conference. The group implemented Kansas City's DS Specialist Program last year and hosted 200 educators at a recent training.
Watch DSAMT's Sheila Moore promoting their Smart Start program during a My Special Child segment on WSMV. You can review the Smart Start powerpoint slides and supporting materials in the DSAIA Repository.
Back To School Tools
This can be a stressful time of year for families as they cope with new teachers, new campuses or even school for the first time. Here are a few resources you can share with your families as they head back to the classroom:
More resources can be found in the DSAIA Repository including the Back To School Tools webinar.
Affiliate Group Creates Their Own Educator's Manual
The Down Syndrome Network of Montgomery County Education Committee has worked for over a year to compile a guide that contains information about Down syndrome, curriculum modification, inclusion, behavior strategies, Universal Design for Learning, and useful reading, writing and math programs. The goal of creating the guide was to streamline individual resources into a product that would be provided on a district-wide level on behalf of the group. This directly aligned with their goal to become the school district's "go to" resource for Down syndrome.
DSNMC board member Heather Sachs explains that DSAIA played a large role in the creation of the guide. "Aside from providing the inspiration to develop this guide, we reproduced some content and obtained ideas from specific groups' websites," explained Sachs. "In particular, the Down Syndrome Association of Central Texas' educator manual was extremely useful. We were blown away by the helpful attitudes of DSACT members and other participants who we met at the past few AIA conferences. Everyone with whom we spoke about this project at AIA encouraged us and offered to provide material."
DSNMC plans to give one printed and bound guide to every elementary school in their local school district. They have also made this guide available as a PDF for download on their website and have placed a copy in the DSAIA Repository to provide DSAIA members with an opportunity to share it with educators in their area or to create their own.
V.I.P. Offer: Wild Apricot Discounts
Website/Member Management/Event Registration
DSAIA has partnered with Wild Apricot to give our affiliates a 20% discount off annual subscriptions to their services. Wild Apricot provides easy-to-use website software, membership/donor management and online event registration modules. The web-based software can be used as a stand-alone website or integrated into an existing website.
For more details on the Wild Apricot VIP Offer, please download the flyer. An Wild Apricot Software Overview webinar is scheduled for September 14th at 3 pm EDT for those interested in learning more about the product. A complete listing of VIP Offers can be found on the DSAIA website.
Louisville Celebrates Its New Facility
DSAIA Member, Down Syndrome of Louisville (DSL) will hold the Grand Opening of its new facility on September 18, 2011 at 2 pm. The 18,000+ sq. ft. Lifelong Learning Center is the culmination of DSL's $3.8 million capital campaign. DSL's capital campaign was presented at this year's conference, and the presentation is available in the DSAIA Repository. All are welcome to attend the Grand Opening and to stop by for a visit when your travels bring you to Louisville.
The Down Syndrome Network of Arizona moved past the traditional meeting format in order to overcome attendance issues a few months ago by using webinars in lieu of an in-person meeting. "Our group thought that a webinar on a popular topic like 'behaviors' would make it more accessible for parents, teacher, para-professionals and therapists," explained Laura Chapnek, DSNAZ Past-President. "One of the criticisms we receive is distance (too far east, not convenient for those in the north or west).
Budgeted dollars for a speaker went farther due to not having to book a venue or provide refreshments. Forty attended the first session and 21 attended the second. "We are planning to incorporate webinars for our 'Parents & Schools in Partnership Program'," said Chapnek. "I believe that we should embrace any technology that is going to help those who work with individuals with Down syndrome to have a better quality of life."
DSNetwork's advice to those contemplating using webinars in their organization? Make sure you do a practice webinar, view the presentation slides early to make sure it is a good use of your funds and the audience's time, and look for cost-saving webinar software (such as GoToWebinar) through sites like Techsoup.
Spread the Word to End The Word at Your Awareness Walk
Help educate the attendees at your walk on the hurtful impact of the R-word. Contact your local Special Olympics chapter(s) and ask them to set up a Spread the Word tent at your upcoming walk. With a small investment of a few hundred dollars at the R-word store, your group can purchase banners for everyone to sign and stickers for those who sign the pledge. If you are tech savvy and have internet access at your walk, we encourage you to have the pledge site pulled up on several computers so attendees can sign on right then and there! You can also purchase/sell t-shirts and have door prize drawings for R-word gear for those who sign the pledge. Visit the Resource Page for additional ideas.
Every attendee who joins a DSAIA webinar between now and December 31st will have their name entered in a random drawing to win an i-Pad. The more webinars you attend, the more chances you have to win! The winner will be drawn and notified on January 2, 2012 and the i-Pad will be shipped by January 10th. Upcoming webinars can be found on our website .
(Note: this promotion does not apply to downloading webinars post event from the DSAIA Repository.)
New VIP Book Discount Program Announced
Phronesis Publishing Offer
DSAIA and Phronesis Publishing are making sharing printed resources cost effective for our affiliates. This V.I.P. Program offers a discount of up to 55%, available through December 31, 2011. Consider the selections offered at the Phronesis website for your awareness walk or educational conference. Download the flyer for more details.
Is Your Organization Covered?
No matter how large or small your group, insurance is sure to be a top priority. But are you covered fully and with the right insurance for your organization's programs and events? DSAIA has partnered with Johnston Fiss Insurance to assist in the review and purchase of insurance products for our members. You'll receive a no-obligation review as well as be eligible for discounts through two respected companies. Watch our informative two-part series "Are You Covered?" online today and download the flyer for more details on the offer.
DSAIA is looking for help with our Member Services and Member Education Committees. We invite you to consider joining one of these committees to provide valuable feedback as we develop additional VIP programs, webinars and solicit documents for the repository. Committees meet monthly via conference call so your time commitment would be 15 hours per year to help DSAIA.
Member Services Committee
Member Education Committee
With the lack of information on current employment status for adults with Down syndrome, Libby Kumin, Ph.D., CCC-SLP, has crafted a survey to collect this information. The survey will collect employment data such as job locations and job descriptions. The goal is to use this information to not only document the current situation but also advocate for job training programs, funding and more variety in job choices.
The survey is designed for adults with Down syndrome age 18-50 (and their parents if applicable). Find the survey online through December 31, 2011.
Down Syndrome Groups Partner to Provide Information to Medical Community
Several organizations collaborated to host an exhibit booth at the National Association of Woman's Health, Obstetric and Neonatal Nurses (AWHONN) Convention which took place in Denver June 25-29th. Over 2,500 attendees from across the country were in attendance; a group of professionals which are on the frontlines for giving a diagnosis in the delivery room and will soon be the professionals presenting prenatal diagnosis when the new blood tests become available. DSAIA, NDSS, DSG of Greater Kansas City, DSA of Central Oklahoma, Mile High DSA and other private donors funded an exhibit booth to provide accurate and up-to-date information on Down syndrome to attendees. The partnership purchased 500 Delivering a Down Syndrome Diagnosis books from Lettercase to supplement the hundreds donated by the National Down Syndrome Society in order to distribute them during the convention.
Around the country, more affiliates are joining the effort as Down Syndrome Indiana, the Down Syndrome Association of West Michigan and the Down Syndrome Guild of Southeast Michigan will coordinate to cover the District V conference in Detroit this October. Local organizations interested in getting involved in the effort are encouraged to contact DSAIA Board Member (and Informed Decision-Making Task Force Leader) Mark Leach for information on upcoming dates and locations.
Learn from more than 10 years of focus group research with nonprofit constituents and donors how to captivate and engage your audience in this 1 1/2 hour webinar brought to you by DSAIA on Wednesday, August 3, at 9:30 am CDT/10:30 am EDT.
Jay Wilkinson is the founder and CEO of Firespring, a marketing and internet services company with more than 3,000 clients on 5 continents. He has educated thousands on topics ranging from marketing to technology to the internet. He has appeared on CNN and other new programs discussing how emerging technologies affect nonprofits and is considered a leading authority on the proper use of the web as a tool to enhance the core mission of any enterprise. This webinar is open to non-members as well - register today!
One-Hour Nonprofit Consultation: Free to DSAIA Members
JPS Nonprofit Strategies Offer
Is your organization grappling with a difficult board issue, an internal management challenge or just not sure how to move to the next level? DSAIA is partnering withJane Page-Steiner, President of JPS Nonprofit Strategies, to offer our members a one-on-one confidential consultation. DSAIA affiliates can now schedule a one-hour clinic with JPS at no cost. The clinics are designed to assist affiliate leaders with their organizational opportunities and challenges and can be scheduled by completing the form included in the VIP Flyer. Offer good through June 30, 2012.
Save On Calendar Printing & More
DSAIA affiliates can take advantage of 14 V.I.P. Offers including discounted calendar printing from PrintPelican. Groups can save an additional 15% on online orders in addition to any current discounts available through the company. The minimum order is 5 calendars (most with free shipping) and includes the use of their online calendar design software. Complete details on the offer are available by downloading the Print Pelican VIP Flyer. A complete listing of V.I.P. offers can be viewed on the DSAIA website.
It's not too late to register to attend the NDSC's 39th annual convention in San Antonio! Their "Deep in the Heart" convention takes place August 5-7 at the JW Marriott Hill Country. While registration has closed for the Youth and Adults Conference, Brothers and Sisters Conference and Kids' Camp program, registration is open until July 15 for the General Convention and pre-conference sessions. Affiliate leaders might consider registering for Affiliates LEAD, a pre-conference especially for them.
DSAIA invites those attending to stop by and visit our exhibit booth while you're there! We'll have drawings for prizes and special guests at our booth throughout the convention. For more information about the convention itself, please visit the NDSC website at http://www.ndsccenter.org/, or call Affiliate Relations Director, Sue Joe, at 800-232-6372.
Using technology for functional and education purposes with individuals with Down syndrome has become a hot topic, but one DSAIA member is doing more than talking. The Down Syndrome Association of the Valley (DSAV) just donated iPads to 21 of its members with Down syndrome. The idea came about when DSAV received a $5,000 grant from Ronald McDonald House to be used in their LAMP (Literacy Arts & Math) Program. "We saw an article on how iPads were being used to help children with special needs," explained Kelly Donadio, co-founder of DSAV, "and knew it was a great fit."
The manager of the nearest Apple store was excited to help with the project. The group created an application and invited their members to apply for one of the initial 14 iPads, with the stipulation being that they would commit to use it for academic purposes. After 18 applications came in, DSAV's leadership allocated more money to the project. The total number of iPads given out was 21. "It is just a coincidence," said Donadio, "we never planned on that number."
Members ranging in age from 3 to 21 are using their new iPads in a number of ways. While younger recipients are using learning apps, a 21-year-old recipient is making it a more integral part of his life. "He used a 3-ring binder for keeping his schedule and such, but now he is in the process of converting it all to the iPad," Kelly told us. "And he is also using it socially to connect with his siblings who are away at college."
Trio Tours to Spread the Word
On May 9, Waynesburg University students K Scarry (from Herndon, Virginia), Sarah Blais (from Attleboro, Massachusetts) and Sam Civitate (from Pittsburgh, Pennsylvania) began a 75-day summer road trip, crisscrossing 35 states to promote the Spread the Word to End the Word campaign and advocate for full inclusion for individuals with intellectual and developmental disabilities (IDD).
During their journey, K and Sarah will offer presentations on
the need for an inclusive society to a variety of groups, including students and campers, Boy Scouts, religious organizations, government officials, and community leaders. They hope to educate their audiences about the innumerable talents and abilities people with IDD possess, and teach them to see their peers with disabilities the same way they do - as classmates, as colleagues, as friends, and most importantly, as equals.
Additional information about the campaign, including instructions on how to take the pledge, is available at www.r-word.org. For a complete itinerary of the tour, visit the STW website.
The Down Syndrome Guild of Greater Kansas City offered an amazing resource to other DS groups this past week. The group posted a video which chronicles one family's journey before, during and after heart surgery. A local photographer was granted permission to go into the surgical suite to photograph the entire procedure start to finish. Parent reactions and post surgery follow up are compiled into a photo video montage. The award-winning video is being shown in some children's hospitals. Although, some images are graphic, they are all tastefully done.
This is a stressful time for parents and the goal of the video was that some anxiety may be alleviated if they can view the process from start to finish. The group is pleased to share this link with their affiliate friends as they think many of your members could also benefit from viewing the video.
As your organization plans your fall awareness event, let DSAIA's VIP Tools assist in your efforts.
Event Registration. Looking for an easy and effective online registration program? EZ Event Solutions has been providing Online Fundraising Site services for the last four years and is proud to offer these services to DSAIA members at a 10% discount. For a complete detail of rates and services, download the flyer.
T-Shirt Discounts. DSAIA has partnered with Rule4 to offer our members incredibly low prices on quality screenprinted T-shirts. This offer is a great way to save on your event costs with prices as low as $2.60 per shirt! Find out more about colors and pricing by downloading the informational flyer (complete with price chart).
Webinars. You'll find easy-to-implement ideas to improve the effectiveness of your awareness walk in DSAIA's Walk the Walk webinar. Explore other informative webinars like the Six in Sixty Series and Creating Powerhouse Publications in the Webinar Archive.
Affiliates nationwide are working with Lettercase to distribute complimentary copies of "Understanding a Down Syndrome Diagnosis" to obstetric medical providers at district American Congress of Obstetrics and Gynecology conferences across the country. The complimentary booklets are funded through a generous grant by the National Down Syndrome Society and the Kennedy Foundation.
Watch an informative presentation on the ethics of prenatal testing which features Dr. Brian Skotko, Patricia Bauer and Mark Leach.
DSG of Greater Kansas City is collaborating with the DSA of Memphis, DSA of Central Oklahoma, Down Syndrome Society of Wichita, and DSA for Families to staff an exhibit booth at the ACOG District VII Conference in Kansas City, MO. The DSA of Central Florida will lead affiliates providing a booth at the District IV conference in Naples, Florida, and the DSA of Central Texas and DSA of Houston will host a booth at the District XI conference in Plano, TX. More affiliates from other districts are also expected to join the effort. A webinar for training exhibitor volunteers will be offered prior to the conferences. Trained parents and self advocates will be working at the booths to hand out local resources and the medically approved gold-standard Lettercase booklets to provide accurate information on the realities of life with Down syndrome.
For more information about ACOG district conferences, visit: http://www.acog.org/from_home/Misc/districtMeetings.cfm, and to find out which ACOG district covers your area, go to: http://www.acog.org/ACOG_Districts/. If you would like to participate in this effort, please contact Stephanie Meredith at email@example.com.
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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