BRIEF DESCRIPTION: This intensive workshop will give you and your entire board the basics of board governance and will use a combination of lecture, discussion and information specific to Down syndrome organizations. There will also be facilitated breakout groups to work on specific organization challenges and opportunities. The workshop is designed for staff and Board leaders to develop a better understanding of board member roles and responsibilities. Learn how to take your organization to the next level with a knowledgeable and focused Board.

LEAD PRESENTER BRIEF BIO: Jane Page-Steiner Jane Page-Steiner has been a part of the not-for-profit community for more than 30 years. Jane founded JPS Nonprofit Strategies, in 2007 because of her passion and ongoing commitment to helping nonprofits build their capacity and improve their performance. Jane is a BoardSource Certified Governance Trainer. Jane partners with BoardSource to provide trainings and workshops that enables board members and staff to work more efficiently and effectively. Jane is a respected speaker, she regularly presents at national, regional and local nonprofit conferences. 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. Prior to that Jane served as the executive director for the Down Syndrome Association of Greater Cincinnati for more than ten years.

PRESENTERS: Sarah Mulligan, Michelle Sie Whitten, Hampus Hillerstrom, LuMind IDSC, David Tolleson, Kandi Pickard

BRIEF DESCRIPTION: Join DSAIA, Global Down Syndrome Foundation, LuMind IDSC Foundation, the National Down Syndrome Congress, and the National Down Syndrome Society for a panel presentation designed to highlight the connection between these national organizations and Down syndrome affiliates. Time will be available to answer your questions.

PRESENTERS: Michelle Sie Whitten, David Tolleson, Nicole Baumer, Kandi Pickard, Seth Keller, Hampus Hillerstrom, & Bryn Gelaro

BRIEF DESCRIPTION: Leaders of a consortium of six national Down syndrome organizations who created the Q & A on COVID-19 and Down Syndrome will present on this critial resource. The information will help local organizations understand current updates on Down syndrome and COVID-19, including treatments and vaccines. The session demonstrates a model for collaborative leadership during period of crisis. Bring your questions!

PRESENTERS: Carly Riggs, Katie Zurkuhlen

BRIEF DESCRIPTION: On March 17th, 2020 Down Syndrome of Louisville hosted our first Zoom dance party. Since then, we have hosted over 700 virtual classes and served hundreds of individuals with Down syndrome all over the country with new programs sprouting up each month! We have tried it all, and have learned a lot. Presenters have compiled a guide to help you through your virtual experience.

PRESENTERS: Sara Goldberg, Maria Silvertson, Shelley Yoder, Debbie Revels

BRIEF DESCRIPTION: Does COVID-19 have you scrambling to hold your first (or second!) virtual walk? Are you worried about how to keep your community engaged and hit your fundraising targets? Some of your fellow DSAIA members, along with NDSS, will share tips, tricks and great ideas to help you re-think your fundraising and awareness walk for 2021.

PRESENTERS: Sheryl Arno, Howie Rosenberg, Tamara Pursley

BRIEF DESCRIPTION: Can an affiliate and a Gigi's Playhouse get along in the same town? Can you create a consortium of affiliates in your state? Can you join with other disability organizations and make a bigger impact? Can you work with a national organization to achieve your goals? The answer is YES! Collaboration is key and it takes work to make it successful.

PRESENTER: Jessica Avila & Roxanne Hoke-Chandler

BRIEF DESCRIPTION: Learn about Massoachusetts Down Ssyndrome Congress's Diversity Outreach Plan, focusing on successful outreach and engagement with Black and African families. Be inspired by creative and meaningful programming and collaborative outreach stategies to meet the specific needs of diverse families of color. Enrich your Down syndrome association and bridge the gap between outreach and engagement.

PRESENTER: Brooke Levey, Adrian Forsythe

BRIEF DESCRIPTION: The Middle School Hangout is a virtual social club designed to keep teens with Down syndrome connected with friends during COVID-19. Each week, participants get gather over a Zoom meeting to tell jokes, dance, play games and socialize. This group is facilitated and organized by Adrian Forsythe, a DSNMC member and self-advocate. Adrian creates a fun, engaging and safe environment where youth learn effective communication, social skills, self-confidence and how to be a good friend.

PRESENTER: Kathleen McCormick

BRIEF DESCRIPTION: Hear from the Communicators Director of the Down Syndrome Association of Delaware. She will share her easy methods for scheduling out communications about your events, programs and more! Learn the basics of Canva (a free design software), how to schedule posts easily, about our text message alert system, as well as Instagram/Facebook strategies! These methods will make your Down syndrome association more professional and cohesive. We promise you will walk away learning something new.

PRESENTER: Sarah Mulligan

BRIEF DESCRIPTION: A good budget is an essential part of any nonprofit organization. This session will give you some easy-to-implement strategies to help you create a dynamic and effective budget. Learn the top three things you can do create a budget you can work with--and learn how to avoid the most common budgeting mistakes.

PRESENTERS: Brian Chicoine, Moya Peterson, Michelle Sie Whitten, Bryn Gelaro

BRIEF DESCRIPTION: The Global Medical Care Guidelines for Adults with Down Syndrome have been published in the Journal of American Medicine and are now available to share! These Guidelines provide the first evidence-based, medical recommendations covering nine important health topics for adults with Down syndrome. This presentation will cover the creation process, the feedback from family focus groups, and the toolkits available. We will discuss how local Down syndrome organizations can best use the Guidelines and answer your questions.

PRESENTERS: Heather Sachs, Stephanie Smith Lee

BRIEF DESCRIPTION: Affiliate leaders are pulled in a million different directions and often do not have policy expertise, but the National Down Syndrome Congress (NDSC) Policy & Advocacy Team is here for you! This breakout session will explore ways that you can engage your members in grassroots advocacy, work with other disability groups in your state, and build relationships with elected officials to promote policy change. 

PRESENTER: Mary Sweeney

BRIEF DESCRIPTION:  Everyone wants to feel good about giving - especially a donor - so let's help them see themselves as the hero we know they are! Through a case study of the Down Syndrome Association for Families of Nebraska, attendees will increase communication and fundraising skills as we talk about storytelling and “donor voice.” Then, apply that knowledge to your real-life examples in the “workshop” portion of this session!

PRESENTER: Krissy Vinson

BRIEF DESCRIPTION: Social media plays an important role in your organization’s success, especially in terms of growing awareness for your mission and engaging your constituents. With a carefully planned social media strategy, you can quickly reach thousands of people at no cost. This workshop will give you some basic tips and tricks to increase your engagement on the most popular social media platforms (Facebook & Instagram). All information shared will be specifically tailored to Down syndrome associations.

PRESENTER: Tamara Pursley

BRIEF DESCRIPTION: In this session, you will learn about tips & tools that can help with pivoting from an in-person to an online event. You can create meaningful, interactive, and engaging virtual experiences during these times of social distancing. The NDSC had to cancel its 48th Annual Convention, then pivot from a 4-day in-person event to a multi-week, virtual event--with little time to plan, market and launch.

PRESENTER: Brian Chicoine

BRIEF DESCRIPTION: After many months, COVID-19 vaccines are now available. Dr. Chicoine, medical director of the Advocate Medical Group Adult Down Syndrome Center  and a board member of DSMIG (Down Syndrome Medical Interest Group)  will share DSMIG’s recently published recommendations regarding the vaccine and individuals with Down syndrome. 

PRESENTER: Shauntel Neal-Howe

BRIEF DESCRIPTION: Take this opportunity to explore ways to engage with individuals and families of diverse backgrounds-- starting now. We'll discuss the importance of having your staff, board, and/or volunteers mirror those that you want to serve. Problem-solving, decision-making and innovation are known to improve when an organization fosters diversity. 

PRESENTER: Jim Hudson
BRIEF DESCRIPTION: Ever hear of a rainy day fund? Cash reserves are like rainy day funds for organizations, but they can also fuel wise strategic investments in the future. This session will help you understand how a reserve account can help your organization weather a crisis (even a pandemic!). Learn how to plan and build cash reserves. Whether your budget is $100,000 or $1,000,000, cash reserves are important. Get practical advice to help you determine how much you should have in reserve, how to set aside those funds, and how to use cash reserves to protect your organization or help propel growth and impact.

PRESENTER: Melissa Crum

BRIEF DESCRIPTION: Learn strategies and thought processes that aid in reaching racial equity. You will learn the differences between being “not racist” and “anti-racist” in your policies, practices, and attitudes, so that you can effectively engage in transformative racial justice efforts and work to dismantle racism within your organization.

PRESENTER BIO: Dr. Crum shares strategies and thought processes that aid in reaching racial equity. You will learn the differences between being “not racist” and “anti-racist” in your policies, practices, and attitudes, so that you can effectively engage in transformative racial justice efforts and work to dismantle racism within your organization.

PRESENTER: Elizabeth Lewis

BRIEF DESCRIPTION:  Elizabeth Lewis, Director of Education with the Down Syndrome Connection of the Bay Area, shares her experiences with the development and implementation of DSCBA's robust Down Syndrome Education Alliance (DSEA), which currently serves over 40 school districts throughout the San Francisco Bay Area.  She will discuss effective strategies for creating meaningful and productive partnerships with local districts, schools, educators and specialists who support students with Down syndrome. 

PRESENTER: Stephanie Meredith

BRIEF DESCRIPTION: In March 2020, the National Center for Prenatal and Postnatal Resources launched a medical outreach research initiative with 12 local Down syndrome organizations. As part of that effort, we have created free online training tools and medical outreach resources available to Down syndrome affiliates nationwide. In addition, we have launched a nationwide study to determine the impact of medical outreach efforts on patient diagnosis We also developed a guide for developing your own medical outreach.

PRESENTERS: Stephanie Sherman, Matthew Janicki, James Hendrix, Moya Peterson, Andrew Nowalk

BRIEF DESCRIPTION: As affiliate leaders, it is top of your mind to know how COVID-19 affects our loved ones with Down syndrome. Clinical researchers will present results from a T21RS survey supported by international Down syndrome organizations on more than 1,000 people with Down syndrome who had COVID-19. A summary of the key findings from other research publications will be provided, followed by a panel of physicians with varied backgrounds who treated individuals with Down syndrome. 

PRESENTER: Linda Lysakowski, ACFRE

BRIEF DESCRIPTION: Every nonprofit needs a development plan. If you don't have one, now is the time to start! If you do have one, but it isn't being implemented or evaluated, you need this session. We will talk about who should be invovled in creating your plan, what it should look like, and how to make sure it gets implemented. You will receive a template to create your plan.

PRESENTERS: Michelle Sie Whitten, Megan Lindstrom

BRIEF DESCRIPTION: COVID-19 has certainly impacted our Down syndrome community including the way in which we fundraise. This session will outline several best practices that can help local Down syndrome organizations plan their next virtual event due to COVID-19 or any new virtual events that could last beyond the pandemic. Topics covered will include: photo and video assets; sizzle reels; how to choose the best ticket and auction platforms; before/during/after social media; and landing pages. 

PRESENTERS: Matteo Lieb, Charlotte Woodward

BRIEF DESCRIPTION: This session aims to equip local organizations with the tools to effectively guide people with Down syndrome towards competitive integrated employment with a focus on navigating the challenges presented by COVID-19. The presenter will review available resources and discuss strategies that local organizations can implement within their communities. This session features a self-advocate perspective on the efficacy of different supports and the value of engaging local stakeholders.

PRESENTER: Heather Barnes

BRIEF DESCRIPTION: We have all learned a lot of hard lessons this past year and while many of us are tired of virtual gatherings and look forward to in-person programs again, should you really throw out all of your online offerings? Join an experienced nonprofit leader as she takes you through assessing what's worked with digital/virtual offerings, what hasn't worked and some of the lessons we learned in 2020. This session will also focus on families who may have been able to engage digitally with your organization for the first time and how to best continue supporting them and their needs in the future.

PRESENTERS: Sarah Cullen, Mary-Frances Garber

BRIEF DESCRIPTION: Learn about the new National Parents First Call Center and the critical role of a certified genetic counselor and professionally trained parent volunteers in the credibility and success of this program. Explore the considerations of outreach and support for prenatal parents who have not yet made the decision to continue their pregancy to parent their child. Feel empowered to access resources and supports that will complement and enhance your Down syndrome association.

PRESENTERS:  Beth Sullivan, Michelle Slape, James Hendrix
BRIEF DESCRIPTION: LuMind IDSC's new membership program, myDSC (my Down Syndrome Community) is a comprehensive, easy-to-search online library of lifestyle, educational, healthcare, medical and research information and tools for the personal goals of individuals with Down syndrome. Affiliates and families have a one-stop-shop for resources created by trusted partners. myDSC will also help raise research awareness in the Down syndrome community and provide access to research opportunities from home and clinical trials near you.