The annual DSAIA Leadership Conference is more than a convention, it's a board retreat and staff development opportunity. The J.W. Marriott Resort & Spa is a beautiful location for the upcoming event but are you utilizing the event to create a "board/staff retreat" opportunity for your organization? Packed with professional speakersfrom both the Down syndrome and nonprofit community, it's an amazing value to your whole team.
And while the hotel may pamper you with spa options, DSAIA will surround you with incredible networking options, delicious meals, and some great technology perks. Keep connected to your organization or home with free WiFi in your room and on the conference floor and utilize our new mobile app to make your experience more engaging. Register today!
Providing timely and important feedback for our members and from our members is an important aspect of the work of DSAIA.
To this end, we hope you will support us by taking five to ten minutes to fill out a survey that will help one of our founding members – the Global Down Syndrome Foundation. The survey is aimed to improve their existing local Down syndrome organization outreach, existing grant program and to ascertain if an additional grant program would be welcomed.
Access the survey by clicking here. Thanks so much for supporting DSAIA and our members!
Steve Beck Jr., was a part of DSAIA from its birth almost ten years ago, and most recently the former Vice Chairman of the National Down Syndrome Society (NDSS). His life was dedicated to bettering the lives of individuals with Down syndrome and the organizations that serve them. We are proud to have worked alongside him and we all benefit from his successes. He will be dearly missed.
In honor of his many accomplishments and to encourage Down syndrome affiliates to pick up the reigns, NDSS and DSAIA are proud to announce the Stephen Beck Jr. "ABLE Act" Affiliate Advocacy Scholarship. The winner of this honor will receive a one-year membership to DSAIA for their organization valued at $995. Applications will be accepted until February 25, 2015. Applicants should complete this brief application. The winner will be announced Sunday, March 8th at the DSAIA Affiliates In Excellence Breakfast by the leadership of NDSS at the Annual DSAIA Leadership Conference in Las Vegas, Nevada.
In early December over 50 leaders from Down syndrome organizations across the United States (and beyond) attended the webinar launch of a new awareness campaign created for World Down Syndrome Day. The campaign, which was created by a coalition of national and international Down syndrome organizations, is based on the concept of "Random Acts of Kindness" and has met with good response from the community.
Work continues on the toolkit, but interested organizations (or individuals) can view the webinar here. The toolkit can be downloaded during the webinar replay or by clicking here. Expect additions to the toolkit in the coming months including a Spanish translation.
Just 8% of Americans achieve their New Year's resolution. That is unacceptable to Down Syndrome Affiliates in Action. You have your strategic plan in place...let's make it EASY to succeed in 2015 by resolving to save money for your Down syndrome organization.
Members of DSAIA have been saving money since the launch of the trade association in 2010. Whether it's savings on office supplies, insurance, event software or credit card processing, there is certainly an opportunity to start off the year saving. And in 2015, DSAIA has resolved to research and add even more VIP (Value-Incentive-Purchase) Offers for our members. (Want to get involved? We have VIP Committee openings!)
And consider passing on savings to your membership as well. Check out two offers aimed at families for legal services and monitoring devices. You'll find all of the 22 available offers here.
In February, NDSC and DSAIA are teaming up to help you help adults with Down syndrome and their families. We will be presenting a webinar on customizing the NDSC adult sibling toolkit for families entitled Making the Adult Sibling Toolkit Work for Your Members.
As you know, people with Down syndrome are living into their 40s, 50s, and even 60s, and for the most part, they continue to live in the family home with their parents. We recognize that for many families, not just those affected by Down syndrome, conversations between parents and adult children on the topics of death, medical incapacitation, healthcare directives and wills are difficult. They are often put off, and in worst cases these conversations NEVER HAPPEN.
Adult siblings who want to be involved in their brother or sister's life but are not familiar with the details involved can use this toolkit to have discussions with their parents. They can learn how to be an effective advocate, friend, and perhaps caregiver for their sibling after their parents are no longer able.
As an affiliate, customizing the Adult Sibling Toolkit with state-specific laws regarding wills, trusts, and guardianship, and local resources for transportation, employment, independent living, etc., will be invaluable to your older members. We will show you which sections most frequently need your affiliate input and strategize methods for getting the toolkit into the hands of families and most importantly, help them to follow through with the task of completing it.
Register today! (This is an open webinar for members and nonmembers alike, sponsored by the National Down Syndrome Congress.)
Hiring Staff: A New Trend in the DS Community?
Gaps in the Maps Survey Released
What To Know When You're Hiring
Hiring staff does have measurable benefits. According to Maureen Gallagher and Louise Borke of Massachusetts Down Syndrome Congress (MDSC), it not only frees the board up to focus on governance rather than day-to-day operations, but also provides more responsiveness to your membership and consistency in your quality and programs. If your decision is to hire staff, plan to devote 3-6 months to create the strategic plan, determine what position to hire first, and determine what you can afford (including salary and benefits).
Try researching other similar organization and the competitive landscape for professional staff in your area. Be sure and review the DSAIA 2011 Demographic Survey which includes staff number and salary information. Before you start hiring, ensure you have enough funds to pay for the staff person and related expenses for at least one year. For more information from MDSC's presentation on Hiring Staff from the 2012 DSAIA Leadership Conference, visit the DSAIA Repositoryâ€™s 2012 Conference Powerpoints section.
To get ahead of the tax and regulatory issues regarding hiring your first staff person, review the information from Charlene Hill's (DSAIA Treasurer) presentation from the 2012 Conference entitled "We've Hired Staff: Now What?". Both the MDSC and Hill presentations are full of information sure to help you as you start this journey. A large variety of employment documents (including Employee Manuals, Applications, Evaluation Tools, etc.) can be found in the DSAIA Repositoryunder Operations and Administration/Employees.
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:
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
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Copyright © 2012 Down Syndrome Affiliates in Action
DSAIA Board Member Speaks at United Nations
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
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.
DS Leaders Converge on Washington
Highlighted by a much-anticipated opening plenary session
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!
Today, nonprofits struggle to secure increasingly competitive
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
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.
Mile High Hires Self-Advocate
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!
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:
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.
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:
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.
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:
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
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 17th 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:
Encourage your entire board to register for this incredible opportunity! To see a complete listing of the dates/times, visit the DSAIA website.
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.
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.
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 112th 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
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.
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.
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!
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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