Down Syndrome Affiliates in Action News

DSAIA Digest May '12: What Makes Your Readers Click

Down Syndrome Affiliates in Action (DSAIA) — Tue, 01 May 2012 16:53:55 GMT

What Makes Your Readers "Click"

In a recent analysis of their newsletter, Madison Area Down Syndrome Society found what stories generate the most interest to their readers. It is harder and harder to compete with the amount of information that your members are bombarded with on a day-to-day basis, so knowing which stories are more likely to pique their interest is a vital bit of information.

So, what did MADSS find? Looking at a year of click-throughs, they found that the majority of "opens" were on human interest or inspiring stories about people with Down syndrome. Next on the list were family and personal accounts of living with a child/family member with Down syndrome and parenting a child with Down syndrome. Other topics are listed in order below:

Medical research (the recent pre-natal article got quite a few hits)
Volunteer opportunities
Government bills associated with disabilities
Maintaining good health for people with Down Syndrome
Recommended area providers for MADSS members

While interest seems to mainly be in stories about other people, MADSS' newsletter volunteer Alyssa Skiba noted that members are also interested in what the government is doing to help people with disabilities and how parents/family members can contribute to the healthy growth of their children.

Thanks to MADSS for sharing their research. Want to learn more about what makes a great newsletter? Read this interesting article about how to avoid the most common newsletter mistakes.

Are You Covered?

Your board members are

volunteers who often make difficult decisions. That is why your organization should have Directors and Officers (D&O) insurance to protect them. The question is not "can you afford it" but rather "how can you not?" Board members can be sued individually or as a group over a variety of reasons. Can your organization withstand a lawsuit and the costs involved?

Not having such insurance can make it difficult to attract and retain good board members, who simply cannot afford to serve if they run such risk to their personal assets. Some professionals are unwilling or unable to serve on a board without D&O insurance.

Learn more about coverage for both D&O and General Liability insurance by watching our two-part series entitled "Are You Covered?" in the DSAIA Repository. For discounts on insurance for your group, be sure and download the V.I.P. Insurance Discount Offer.

Self-Advocate Leadership A Top Priority

DSAIA Board Members (from left to right): David Egan, Joe Meares & Doris Erhart

Including self-advocates in the board room successfully is the goal of the newly formed Self-Advocate Leadership Committee. The committee, co-chaired by DSAIA board members Doris Erhart and David Egan, presented sessions at the 2012 DSAIA Conference and is now hard at work developing resources and training for affiliates.

The committee has already started compiling items to be included in a "toolkit" for boards. The toolkit's purpose is to give groups the necessary resources to make self-advocates a productive member of the board. Following the formulation of the toolkit, the committee plans to present a training webinar and present breakout sessions at the 2013 conference in Cincinnati.

"While we have a good starting number," explains Doris Erhart, "we still need committee members with a wide range of backgrounds. We would like to have affiliate board members both with and without Down syndrome as well as those from groups who do not have a self-advocate on their board." If you are interested in joining the committee, contact Doris Erhart or David Egan today.

Down Syndrome Affiliates in Action

P.O. Box 2122

Bismarck, ND 58502

701.425.7129 info@dsaia.org www.dsaia.org

DSAIA Digest: April 2012

Down Syndrome Affiliates in Action (DSAIA) — Wed, 11 Apr 2012 20:47:27 GMT

DSAIA Board Member Speaks at United Nations

David Egan, board member of both Down Syndrome Affiliates in Action (DSAIA) and Down Syndrome Association of Northern Virginia (DSANV), had the opportunity to speak at the United Nations on World Down Syndrome Day. "David is a phenomenal speaker," said Deanna Tharpe, DSAIA Executive Director. "His presentation at the U.N. was full of positive images, real issues, and a call to action. It was a delight to watch him and know that his message was being heard by so many around the globe."

David Egan @ The United Nations: World Down syndrome Day 03/21/2012

It was the first time the United Nations has recognized the March 21st event. "For too long, persons with Down syndrome, including children, have been left on the margins of society," UN Secretary-General Ban Ki-Moon said in a message to mark the World Day. For decades the UN has worked to ensure all persons are given the rights they deserve, and in doing so, they adopted the Convention on the Rights of Persons with Disabilities in 2006.

Ban applauded the global partnership of those who gathered to bring awareness and help bring initiation to World Down Syndrome Day, saying that "let us each do our part to enable children and persons with Down syndrome to participate fully in the development and life of their societies on an equal basis with others. Let us build an inclusive society for all."

David was in good company as a great number of self-advocates and professionals spoke during the event. To watch the entire podcast, click here.

Quarterly Town Hall Meeting Planned

Down Syndrome Affiliates in Action is intent upon creating opportunities for our members to give us feedback in the form of questions, comments or suggestions. Continuing on our "Town Hall" held at the conference each year, DSAIA has planned a conference call to be held quarterly for our membership.

The call is scheduled for Tuesday, April 24, 2012 at 7 pm Eastern (6p Central/5p Mountain/4p Pacific). The meeting will begin with a quick report of DSAIA activities and then move into audience participation. DSAIA encourages our affiliates to have at least one individual in attendance at each meeting and come prepared with comments or questions. Register today!

Repository Hits the 1,000 Item Mark

DSAIA's Education & Training Committee set a goal in late 2011 to work toward housing 1,000 items in the Repository by the end of 2012. Now, the committee will have to revise their goal as the Repository just passed the 1,100 mark! The latest items to be added to the Repository include employee/program evaluation tools, marketing samples and supporting documents from the 2012 DSAIA Leadership Conference.

The Repository recently underwent a facelift in order to help members access all folders/documents directly from the DSAIA website. One other small change that you will notice is the continued sub-categorization of each topic folder. The Education & Training Committee still needs your help. Take a moment to send in your documents for inclusion. In high demand are program ideas, newsletter articles and even pictures! (Remember that all submissions of articles and pictures will require permission by author/subject.) Send your submissions to info@dsaia.org.

DSAIA Digest: March 2012

Down Syndrome Affiliates in Action (DSAIA) — Wed, 11 Apr 2012 20:49:38 GMT

DS Leaders Converge on Washington

Leaders from across the nation arrived in Washington, D.C. last week to attend the Down Syndrome Affiliates in Action Leadership Conference and the National Down Syndrome Society's (NDSS) Buddy Walk on Washington. After spending Thursday, March 1st visiting legislators on Capitol Hill, 225 individuals spent time learning, sharing and networking to improve their service capacity to their membership at the annual conference.

Highlighted by a much-anticipated opening plenary session

Dr. Browning addresses attendees during Opening Plenary.

by Dr. Bev Browning, author of Grantwriting for Dummies, the conference brought rave reviews. "It was such a great feeling to know that my Board member (who paid for herself) was going to have a great time and that it would be worth her time and money," said Nancy Litteken, Club 21 Learning & Resource Center. "And it was! She loved it. All the members of the committee were warm and helpful and communicated how much every member was valued and an important part of a larger community."

While attendees will take their information home to their organizations to process and implement, the DSAIA Conference Committee will begin preparations for February 21-24, 2013 in Cincinnati, Ohio. Save the date on your calendar now!

DSAIA Members Receive New Grantwriting Resource

Today, nonprofits struggle to secure increasingly competitive

and hard-to-find grants. With fewer resources and growing demands, nonprofits have had to be resourceful on all grant seeking fronts. Last week during her plenary presentation, Dr. Bev Browning announced DSAIA's newest VIP Program: subscriptions to Nonprofit One-Stop by eCivis for ALL members as a no-cost benefit of membership.

Nonprofit One-Stop by eCivis provides top-quality research and training to nonprofit organizations from top grant professionals. Nonprofit One-Stop isn't just an electronic catalog of funder and grant profiles. It's a professional research team providing you with analysis of what a nonprofit organization needs to survive, thrive, and win! Through this DSAIA VIP Offer, you receive nearly $6,500 in value at no cost to your organization! Let One-Stop open the door to your group's sustainability by taking advantage of this incredible offer. To find out more about the program, click here. If you are a member of DSAIA and have not received your invitation email, please contact us today.

21 Quotes in 21 Days

DSAIA is proud to promote World Down Syndrome Day through the "21 Quotes in 21 Days by People with Trisomy 21." The campaign utilizes email and social media to spread a great awareness message. Special thanks goes to Gail Williamson of Down Syndrome Arts and Media(www.DSiAM.org) for coordinating the campaign this year for DSAIA. To submit a quote for consideration, contact Gail at Gail@DSiAM.org today. If you are not receiving the daily emails, please subscribe to our mailing list today. Be sure to share these with your membership via Facebook share or Twitter.

Back By Popular Demand: Great VIP Savings!

Bobux Baby Shoes Offer

Thinking about marketing your walk to new parents with a Baby Bootie Promotion? Or perhaps you're looking for an extra item to place in your Welcome Baby Package? Back by popular demand, he DSAIA/Bobux Baby Bootie Offer pairs a great product with an attractive price.

DSAIA members can take advantage of this quality product with great savings! Regularly priced at $30 per pair, your organization can purchase Bobux shoes for only $14.25 per pair. You'll save over 50%! And some discontinued styles will be available for even less! Prices do not include shipping. Offer valid until December 31, 2012.

To view a video detailing a great "baby shoes" promotion aimed at increasing your walk revenue and new parent attendance, click here.

Band of Angels Package

Save $30 when you purchase a Band of Angels customizedsupport package as a DSAIA member! Receive the award-winning Common Threads soft cover book,My Baby Can! 18 Month Developmental Calendar(boy or girl cover), Inspirational DVD, Hi, I'm Benchildren's book, and both a large and small 'Halo with a Twist' pin! The total retail value of this package is $65.

DSAIA Digest: February 2012

Down Syndrome Affiliates in Action (DSAIA) — Tue, 07 Feb 2012 18:28:32 GMT

Mile High Hires Self-Advocate

Mile High DSA recently hired its first employee with Down syndrome. "After 30 years of service to the community and specifically programs that promote the inclusion, independence, and empowerment of those living with Down syndrome, we felt it was important for MHDSA to practice what we preach," said Mac Macsovits, MHDSA Executive Director. "We expect others in the community to hire, train, and employ those with Down syndrome, yet we were not doing that ourselves. The time had come to make this right."

An eight-month process included planning for long-term funding of the position and a vigorous hiring process including interviews by staff. Macsovits explained that an offer was made based on the needs of the organization, not the needs of the candidate. "This is a staff member," he said, "not a person with Down syndrome. This staffer has real responsibilities and is expected to perform.

For those groups considering adding an individual with Down syndrome to their staff, Macsovits offers this advice:

1) It can be a very difficult decision when you have multiple qualified candidates. Be prepared to make that decision.

2) You MUST have a specific job description with requirements. This is not a feel good position; you are paying someone to do a job.

3) Make sure that the parents understand this is not a "bring your parents to work" environment. The person must get to work themselves and complete their work themselves. Mommy & Daddy are not included in that other than possible transportation.

Does your organization have a self-advocate on staff? Tell us about it!

Learn From the Pros at DSAIA 2012

DSAIA is pleased to bring two profssional speakers to DC to present at the Friday and Saturday plenary sessions. Dr. Bev Browning, bestselling author, will present at the Opening Session on Friday morning. Her presentation entitled "Building Your Organizational Capacity as an Affiliate: Why It's So Important To Be Aggressive" will certainly start the conference off with a bang.

Saturday morning's plenary speaker will be Pamela Grow, owner of Grow Consulting. Author, coach, copywriter and nonprofit marketing consultant, Grow segued from nearly seven years of working in programming and communications into the world of fundraising. She is the founder of #smNPchat on Twitter - the only Twitter chat geared specifically to the small nonprofit development shop - and she co-hosts Small Shop (a regular column of Fundraising Success Magazine). Her presentation is entitled "Doing It All and Doing It Well: Are You Focusing on What Matters?"

View the rest of the conference schedule on our Online Community site. Click here to register for the conference today!

Streamline Your Online Walk Registration While Saving Money

EZ Event Solutions: Tailor-Made For Your Walk

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. The EZ Event Solutions fee structure is based on a percentage of an event's Usage Amount (UA) and no setup fee which makes this offer even more valuable.

Their online system was built specifically to provide the services for events that require team pages and team fundraising efforts. Several Down syndrome groups across the country are utilizing their software with great success. EZ Event Solutions offers their services to DSAIA members to help your organization's event be a success.

Download the EZ Event Solutions flyer to take advantage of this incredible offer. To find out more about other VIP Programs, visit our website today.

Board Development Series Continues

DSAIA's latest workshop series continues in February with Board Orientation, presented by Katherine Campbell. This webinar will focus on how to prepare your newly-recruited board members for their role as engaged leaders and supporters for your organization. We will explore the full range of information that should be covered in orientation, as well as creative options for format, timing, and who might be involved. Implications for long-term retention and accountability will also be discussed. The webinar will include a one-hour presentation followed by 30 minutes of Q & A and is scheduled for Tuesday, February 21st at 8 pm Eastern.

This month's presenter, Katherine Campbell, is the Executive Director at Council for Certification in Volunteer Administration and owner of Skye Consulting. She is currently serving as adjunct faculty at Virginia Commonwealth University and University of Virginia where she designs and teaches courses in the Nonprofit Management Certification Program. She specializes in assisting public and private nonprofit organization in accomplishing their mission through effective management of people and resources.

Four webinars will follow including:

Fundraising with Your Board
What Is the Role of Your Board?
Shared Responsibility & Accountability
Strategic Planning with Your Board

Encourage your entire board to register for this incredible opportunity! It's not too late to register. Those registering for the series will be given an opportunity to view previous webinars in the series (which will not be available online until June). A Certificate of Completion will be given to attendees at the conclusion of the series. To see a complete listing of the dates/times, visit the DSAIA website.

DSAIA Digest: January 2012

Down Syndrome Affiliates in Action (DSAIA) — Tue, 07 Feb 2012 18:26:57 GMT

Plan Now To Be a Part of the Worldwide Celebration!

Often overlooked by the numerous activities (including walks) held during Down Syndrome Awareness Month, World Down Syndrome Day provides your organization with an opportunity to engage your membership and community beyond October. It provides justification for why an organization should host a medical outreach program or peer presentation, or publish a submitted column.

A list of over 40 low and no-cost ideas are featured in the 2010 DS Awareness Ideas webinar now housed in the DSAIA Repository. Remember these steps to success from the webinar:

Pick an idea based on budget and time
Create a time line for activities
Enlist a committee
Write an article for your newsletter
Send press releases

It could be as simple as starting a viral campaign with the help of your membership or launching a new program, website, newsletter, or product on 3/21/12. Try sending one inspiring email a day to your stakeholders the first 21 days of March. DSA of Los Angeles' Gail Williamson has orchestrated the 21 Days of DS Quotes and invites groups to subscribe to DSALA's emails and then share with their members via social media or email campaign.

Get your families involved in their own campaigns by asking them to send a card to their physician with a picture and update on what their child is doing. Include the latest healthcare guidelines, a well-written article about someone with DS, or perhaps a list of the resources your organization offers those in the medical community. For little investment, your group can hold a T-shirt design contest, give plaques/awards to locals who have made a difference in the lives of individuals with Down syndrome or just show up at your local gathering place (downtown?) with balloons and information on DS to pass out to people who are gathered there.

No matter what you choose to do to celebrate, now is the time to start planning! For more ideas, visit the DSAIA website to watch the DS Awareness Ideas video and view the Awareness Materials under Events & Fundraising in the repository.

Get On the Fast Track at the 2012 Conference!

New to the 2012 DSAIA Conference is the ability to choose your sessions by track. As in the past, you will have many breakout sessions from which to choose, but this year they have been organized into eight specific tracks. If you are a board member, staff or commitee person interested in one topic area, you can immerse yourself in top-quality training without having to choose one breakout session over another in any given time slot. Tracks offered this year are:

Fundraising & Awareness
Board Management
Organization & Staffing
Prenatal Testing & Medical Outreach
Programs
Marketing & Member Services
Self-Advocates
Legislative Advocacy

The DSAIA Conference Planning Committee has tried to include at least one of the eight tracks in each time slot with very little overlap. So fasten your seatbelt and enjoy the ride!

View the conference breakout schedule on our Online Community site. Click here to register for the conference today!

Remember, Early Bird Discounts end on January 10th!

VIP Discounts Continue on NetApprentice Products

3 Nerds & A Server Offers a Variety of Products

3 Nerds & a Server offers DSAIA members a substantial discount on any of their NetApprentice products and modules. From base CMS software (if you know Word, you can maintain your website!) to event calendar and newsletter modeules, 3 Nerds offers discounts up to 25% for DSAIA groups.

Recently, 3 Nerds has added several new modules to the DSAIA VIP Offer including:

Document Warehouse Module
Blog Module
Chat Module
Commerce Module

Find out more about the 3 Nerds VIP Offer by downloading the flyer. To see a complete list of VIP Programs, visit our website.

DSAIA Announces New Board Development Webinar Series

DSAIA's new workshop series begins with Board Development 101 on Tuesday, January 17^th at 8 pm Eastern/7 pm Central with presenter Jane Page-Steiner. During this webinar we will discuss the various aspects of board development and strategies you can implement to improve your board. We will explore the challenges of board recruitment; ways to develop a strong board structure and how board education can create a more vibrant and effective board. The webinar will include a one-hour presentation followed by 30 minutes of Q & A.

Jane Page-Steiner, is a respected nonprofit consultant and public speaker. Currently the president of JPS Nonprofit Strategies, she has been a part of the not-for-profit community for more than 23 years. Jane founded JPS Nonprofit Strategies because of her passion and ongoing commitment to helping nonprofits build their capacity and improve their performance. Before establishing JPS Nonprofit Strategies, Jane served as the Vice President of Affiliate Relations for the National Down Syndrome Society. Jane provided regular counsel on leadership development, capacity building and resource development for affiliates across the country. Jane has served on numerous committees, task forces, and planning groups, and served on the board of the National Down Syndrome Society for two terms. Jane served as the first executive director for the Down Syndrome Association of Greater Cincinnati for more than ten years. She provided leadership during a period of tremendous growth in revenues, services and staff. She worked closely with the board to develop and implement strategic plans and create a diverse development program, enabling growth in programs and a dramatic increase in revenues.

Five additional webinars will follow each month:

Board Orientation
Fundraising with Your Board
What Is the Role of Your Board?
Shared Responsibility & Accountability
Strategic Planning with Your Board

Encourage your entire board to register for this incredible opportunity! To see a complete listing of the dates/times, visit the DSAIA website.

DSAIA Digest: December 2011

Down Syndrome Affiliates in Action (DSAIA) — Tue, 07 Feb 2012 18:25:38 GMT

Treasure Valley Reaches Out

Diversity outreach is a difficult initiative to pursue, but one that most groups have tried to tackle over the last few years. Treasure Valley Down Syndrome Association (TVDSA) has begun the journey of reaching out to its Spanish-speaking members through their newsletter. "We have a new board member that is Hispanic," explained Celena Auger, TVDSA Newsletter Editor. "I told her that I would like to "try" a double issue of our newsletter (Spanish & English) but would need help translating it. Since July I had found two articles that were already available in both languages, which I thought would be the "easiest" way to start."

TVDSA published their first e-newsletter in both languages in November. Even though she was able to find articles that were available in both languages, Auger said it was still double the effort. "I had to have my English-version done a week earlier than usual to forward to the the communications committee for review and finalization," she explained. "That meant all committee deadlines were moved up by a week as well in order to give the translator adequate time. The translator stated the side bar was the most complicated, as it isn't "dialog" and many English words have more than one meaning. "

Auger said they will do it again, but not monthly as it is a very involved process when done correctly. To view their November newsletter in Spanish, click here. To view it in English, click here. To find out more about Diversity Outreach, DSAIA members can view also view the 2010 webinar on the subject featuring presenters from Down Syndrome Indiana and Massachusetts Down Syndrome Congress.

DSAIA Makes Conference Networking Even Easier

DSAIA has recently opened its new networking tool for the upcoming 2012 conference. DSAIA's new Pathable community allows you to connect to other conference attendees easily. It allows you to schedule your conference day with just a few clicks and then download to a printed or mobile copy!

This year's conference registration fees also include Buddy Walk on Washington registration so making those congressional appointments will be important. The new DSAIA Pathable site will allow you to make appointments on your calendar with other groups - making it easier to divide and conquer using the power of your statewide Down syndrome organizations.

Wondering about other attendees with your same job (board or staff) description? What about others whose passion is the same initiative as yours? Using tags on your profile will help you connect with others who are working on Fundraising, Medical Outreach, or Diversity Awareness. Send private messages to connect or use your Twitter account to post online.

Visit the site today but enjoy full benefits when you register for the conference.

The ABLE Act is Back!

As we gear up for an active advocacy event in 2012, the National Down Syndrome Socity (NDSS) gives Buddy Walk on Washington/DSAIA Leadership Conference attendees a head start on the issues on everyone's agenda next year. The upcoming NDSS webinar will be "ABLE Act 101 - Everything You Need to Know About the ABLE Act" and is scheduled for December 7th at 1pm Eastern.

The Achieving a Better Life Experience (ABLE) Act of 2011 (S. 1872/H.R. 3423) was just introduced in the 112^th Congress in both the U.S. Senate and House of Representatives. When passed as a law, the ABLE Act will give individuals with disabilities and their families the ability to save for their child's future just like every other American family. The account could fund a variety of essential expenses for individuals, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation. During this webinar, you will learn the nuts and bolts about the ABLE Act and how you can take action to get the ABLE Act passed into law.

To register for the webinar, click here. If you would like to begin to make your plans to attend the events in February/March of 2012, visit our Conference page online.

New Technology VIP Program
Available

Firespring Offers Website & Social Media Package

Your organization's website, communication program, and social media plan can make a real difference in this age of technology. That is why DSAIA is working with companies such as Firespring to offer discounts on products to help you reach your potential in this digital age. DSAIA members receive a 20% discount on Firespring products. For more information including website design, email marketing and membership management, download the Firespring VIP Flyer.

Take Advantage of Discounts Before They Expire

The DSAIA Member Services Committee is hard at work on renewing discounts from prior vendors plus looking at new and exciting programs for 2012. In the meantime, don't let 2011's discounts pass you by! Find out more about these expiring programs and take advantage of the savings:

To see a complete list of VIP Programs, visit our website.

DSAIA Announces New Board Development Webinar Series

In response to our members' requests, DSAIA's Education & Training Committee has scheduled an in-depth board development training series. Beginning with Board Development 101 and continuing for a minimum of six monthly webinars, the series will tackle everything from board member roles and responsibility to fundraising and strategic planning.

The first webinar in the series is scheduled for Tuesday, January 17, 2012 at 8 pm Eastern. The series will continue with one session each month. A Certificate of Completion will be awarded to attendees completing all six sessions. To learn more or register, visit our Webinar page online. This webinar series is open only to DSAIA members. If your organization has thought about joining, this is a perfect time to find out more about membership and all its benefits.

DS Group Therapy: Easter Egg Hunt

Down Syndrome Affiliates in Action (DSAIA) — Tue, 01 Nov 2011 15:55:10 GMT

This is our initial blog post - if you want to see more, visit us here.

By Joe Meares, President, DSAIA

When my four kids were younger, each Easter, I would hide dozens of eggs around our house, yard and woods for them to find.

Once they gave up, it was up to me to walk the entire course to retrieve the eggs not found or to lead them to the still-hidden treasures.

This was logical because I’d hidden the eggs and only I knew where they all were!

If you think of your repository as a great big yard filled with Easter eggs and in some are exactly the treasure you’re seeking, then, please remember Deanna is the one who “hid the eggs”. Deanna KNOWS where all the treasures are.

OK, I thought of the Easter egg analogy after I asked Deanna for a pie chart with a breakdown of items in the repository and all the pretty colors reminded me of Easter eggs.

I REALIZE there is a risk in comparing items in our repository to well-hidden eggs, butundefinedit’s just an analogy!

I asked for the chart after visiting with several DSAIA members recently.

A couple of things I heard:

An E.D. was looking for something specific in the repository and couldn’t find it. She called another organization and borrowed their document. I asked Deanna to look for the same item and it turns out there are 18 examples in our inventory. This E.D. only saw one example.

A board president asked me if Deanna was a volunteer or staff. With the belief she was a volunteer, this board president wanted to respect Deanna’s time and seldom asked for help. She also said as a volunteer herself, she doesn’t always have time to find what she needs in the repository.

To be clear as a crystal egg-- Deanna is staff.

Deanna’s job is to provide support for DSAIA members. That SUPPORT includes leading you to the treasure- filled eggs in the repository. After all, only Deanna knows where everything is hidden.

We have over 800 items in our egg hunt now and it continues to grow. There has to be a limit of the categories, so, sometimes finding exactly what you want takes a little digging.

Helping you find what you need IS Deanna’s job and it’s a service your membership in DSAIA entitles you to.

I encourage all of you to take advantage and just ask where your golden egg is hidden.

The colorful pie chart also shows some thin slices. That will be the grits for my next blog and I’m sure Deanna will tell me when it’s due. That too, is her job!

Affiliates Exhibit at Area ACOG Conferences

Down Syndrome Affiliates in Action (DSAIA) — Tue, 01 Nov 2011 15:20:56 GMT

Affiliates Exhibit at Area ACOG Conferences

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 Society
Network 21 - Central New Jersey
Red River Valley Down Syndrome Society

DSAIA Supplies "Sequenom Response Toolkit" to Members

Down Syndrome Affiliates in Action (DSAIA) — Fri, 21 Oct 2011 17:59:51 GMT

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 mleach@stites.com. If you are a DSAIA member and did not receive the communication, please contact DSAIA Executive Director Deanna Tharpe at director@dsaia.org or 701.425.7129.

DSAIA Digest: October 2011

Down Syndrome Affiliates in Action (DSAIA) — Tue, 25 Oct 2011 18:52:29 GMT

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:

99% of parent/guardians said they loved their child with Down syndrome
94% of brothers/sisters expressed feeling of pride about their sibling
99% of people with Down syndrome said they were happy with their lives

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.

New Study on Down Syndrome Shows Positive Attitudes

Down Syndrome Affiliates in Action (DSAIA) — Fri, 30 Sep 2011 18:08:29 GMT

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:

99% of parent/guardians said they loved their child with Down syndrome
94% of brothers/sisters expressed feeling of pride about their sibling
99% of people with Down syndrome said they were happy with their lives

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:

Results from parents/guardians: http://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.34293/pdf
Results from brothers/sisters: http://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.34228/pdf
Results from people with Down syndrome: http://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.34235/pdf

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.

DSAIA Digest: September 2011

Down Syndrome Affiliates in Action (DSAIA) — Thu, 01 Sep 2011 15:24:10 GMT

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.

DSAIA Digest: August 2011

Down Syndrome Affiliates in Action (DSAIA) — Tue, 30 Aug 2011 20:48:30 GMT

Phoenix Group Utilizes Technology To Bring Information To Members

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.

It Pays To Attend DSAIA Webinars

Every attendee who joins a DSAIA webinar between now and December 31^st 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 10^th. 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.

All Hands on Deck

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

Explore and follow up on brokered discount opportunities for DSAIA members
Create printed materials for the V.I.P. Programs (looking for someone with desktop publishing/spreadsheet skills)
Assist in member retention/recruitment campaigns

Member Education Committee

Plan and program monthly webinars
Identify and locate additions to the Repository
Assist Conference Committee on selection of speakers/topics

Adult Employment Survey

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.

DSAIA Digest: July 2011

Down Syndrome Affiliates in Action (DSAIA) — Tue, 30 Aug 2011 20:38:09 GMT

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.

Is Your Website Working As Hard As You Are?

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.

You'll discover:

the 5 required elements every website needs,
the 3 biggest mistakes nonprofits make and
5 proven methods for promoting your website.

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.

Join Us In San Antonio

It's not too late to register to attend the NDSC's 39^th 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.

DSAIA Digest: June 2011

Down Syndrome Affiliates in Action (DSAIA) — Tue, 30 Aug 2011 20:32:33 GMT

Group Donates iPads to 21 Families

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 STW Tour visited the DSA of Memphis recently on their road trip.

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.

DSAIA Member Shares Amazing Video with DS Community

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.

VIP Programs Save Time & Money For Your Awareness Event

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.

President's Message (May 2011 Newsletter)

Down Syndrome Affiliates in Action (DSAIA) — Tue, 03 May 2011 11:36:27 GMT

Several inquiries that we would like to respond to have been forwarded to DSAIA since our 2012 conference announcement. Our board voted to purposefully align our conference dates with the NDSS Buddy Walk on Washington to be responsive to our members and to alleviate travel or financial strains on affiliates, thereby allowing them to have representatives at both important events. Questions have been forwarded which indicate a misconception that DSAIA is associated with or endorses one walk brand over another. Nothing could be further from the truth. DSAIA has no vote or voice in our member's board rooms and we support our members regardless of what brand they choose to utilize for their walks.

DSAIA is committed to helping affiliates maximize their operational capacity through cutting edge programs, best practices in non-profit management and effective fundraising initiatives. We seek to provide our members with tools and resources to grow their walks and make them more effective in promoting awareness while increasing dollars raised. Our hope is that this statement will alleviate any confusion or misconceptions moving forward. Feel free to contact DSAIA should you have any questions.

Organizations Collaborate to Share Prenatal Resources with Medical Professionals

Down Syndrome Affiliates in Action (DSAIA) — Tue, 03 May 2011 11:35:28 GMT

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 stephaniem@lettercase.org.

Down Syndrome Awareness on Aisle 5

Down Syndrome Affiliates in Action (DSAIA) — Tue, 03 May 2011 11:31:47 GMT

The Down Syndrome Association of San Antonio found a great awareness tool at an unlikely location: the local supermarket. DSASA partnered with H-E-B supermarkets to produce special recyclable bags for customers. The bags featured the artwork of Natalia Diaz, a10 year old with Down syndrome, and went on sale in March. H-E-B donates 10% of the profits from the sale of the bags ($1.50 each) to DSASA. Natalia, who has Down syndrome, submitted her artwork to a contest held by the DSASA that asked those with Down syndrome to submit a drawing with a Texas, Spring or Fiesta theme. From 35 entries, Natalia's drawing was chosen as the clear winner.

"These bags sold out in a week," said Terri Mauldin, DSASA Executive Director. "The good news is they are going to produce 50,000 more (it was 20,000 the first time) and sell them during the month of October for Down Syndrome Awareness Month." DSASA is currently planning to hold another coloring contest for a new design which will be featured on bags to be sold next spring. The goal is to roll out the new bags on March 21^st, World Down Syndrome Day.

Diversity Task Force Adds Spanish Materials to Repository

Down Syndrome Affiliates in Action (DSAIA) — Tue, 03 May 2011 11:30:17 GMT

The DSAIA Diversity Task Force, which formed at the 2011 Leadership Conference in Dallas, has made their first initiative to increase the number of Spanish language materials in the DSAIA Repository. While working on a number of other aspects of diversity outreach, the task force has already submitted 15 new documents for the Spanish Materials section of the Repository. Each document included in that section will be available in both Spanish and English.

Self Advocates Speak Out On Capitol Hill

Down Syndrome Affiliates in Action (DSAIA) — Thu, 31 Mar 2011 12:33:44 GMT

In March, DSAIA Board Member David Egan spoke before a packed room on Capitol Hill regarding barriers people with intellectual disabilities face in the workplace. Currently, employment participation is estimated to be as low as 23.9 percent. This is a figure which Sen. Tom Harkin, D-Iowa, who chairs the committee, described as "shockingly low."

“We need to do much better,” Harkin said. “We need to address this problem aggressively and creatively in order to increase the quality of life for the more than 50 million Americans with disabilities, including the almost eight million with intellectual disabilities.” Witnesses told the committee that increasing employment opportunities relies on having high expectations and working closely with businesses to remove attitudinal barriers. In addition, it’s essential to start working with children at a young age to train them for the workplace and get them involved through internships in competitive employment situations.

That’s how David Egan got his start. For 15 years, the Virginia resident and Special Olympian has worked as a distribution clerk at the consulting firm Booz Allen Hamilton where he began as a high school intern. "Employment of people with intellectual and developmental disabilities is a smart business decision and a social responsibility," Egan told the committee. "I feel like I am part of a team. My company offers more than a job - it's a career."