Sessions
The number of sessions at the AIA conference is impressive. Click on a session title to see the presenter name and description. The sessions are not in a particular order and descriptions have been written by the presenters. Please read descriptions to learn about a specific session.
Jon Colman, Executive Director, National Down Syndrome Society
Looking Back, Looking Forward: 30 Years. Jon Colman, NDSS President, will present an overview of NDSS' programmatic activities, past, present, and future and take audience questions.
David Tolleson, Executive Director, National Down Syndrome Congress
The NDSC - Who We Are, What We Do, What We Believe. The Down syndrome movement from a national perspective in 20 minutes or less by David Tolleson, ED.
Mark Leach, Board Member, Down Syndrome of Louisville, IDM TF of AIA Lead
In 2007, standards of care were changed such that now all expectant mothers will be offered prenatal testing. In 2008, news was made by the development of a non-invasive prenatal test for Down syndrome that has the potential for being diagnostic without any risk of miscarriage. Where universal prenatal testing has been in place, the next generation of babies born with Down syndrome is reduced. Studies have shown that doctors admit to a lack of training about prenatal testing and surveyed mothers of children with Down syndrome have said the way in which a diagnosis is delivered and the information and resources provided need to be improved. The session will highlight measures taken by the National organizations and local affiliates as well as current legislation that has passed at the state level and is pending on the national level. Comments and suggestions on what attending affiliates are doing will be welcomed.
Sarah Hartway, RN, MS and Health Care Partnership Coordinator for Mile High DS Assoc.
In this session, I will share what we have learned at MHDSA after four years of providing health care outreach. The focus will be on sharing strategies that have proven most successful in the areas of planning, program development, staffing, funding, implementation and evaluation. Additionally, lessons learned about ineffective strategies will be discussed and areas yet to be fully developed will be shared. At the end of this breakout session, participants can expect to come away with strategies they can take home and apply in order to most effectively use limited resources to begin or expand a health care outreach program on a local basis.
Linda Orso, Executive Director, Down Syndrome Association of Greater St. Louis
If your group serves a large geographic area this session is for you! Learn how to provide your members immediate services in individual communities that will garner long term relations. The community group model provides a successful formula for avoiding staff or volunteer burnout while increasing local programs, member satisfaction, new family referrals, fundraising support, and ties to local school districts and businesses.
Joe Bockerstette, Board Chair, National Down Syndrome Society
This session will provide the audience with a broader context for strategic planning, a step by step method for developing a local group's strategic plan and an annual updating process for keeping the plan current. The presentation will contain examples from Ds affiliates to help groups get started. At the end of this breakout session, participants will know how to develop a strategic plan appropriate to the group's size and scope.
Kori Shaw, Founder of the Flourish Network
Stephanie Meredith, AIA Informed Decision-Making Task Force Medical Outreach, Canister Documentation Director
Does your organization plan to launch a prenatal outreach program in your community? Is your current prenatal outreach program effective? This workshop will help you identify materials, develop a systematic, researched outreach program, and connect with other groups that can guide you in the process. It will help streamline the development time and maximize resources so you can launch a successful prenatal outreach program in your area. The session will also describe specifics on how to implement a program and provide materials.
Frank Buckley, Chief Executive Officer, Down Syndrome Education International, Down Syndrome Education USA
Dana Halle, Co-Founder and Board Member, Down Syndrome Foundation of Orange County
Support in education is one of the greatest services you can provide your families. Using The Learning Program as a guide, this session will provide affiliate leaders with information on a range of delivery models for providing local, evidence-based educational support to children, parents and teachers. Models of The Learning Program are currently offered in California, Missouri, New Mexico and Florida, and coming soon to Texas, Massachusetts and Virginia. An additional 1,400 families, teachers and therapists from across the United States and abroad access Learning Program materials. Affiliates of any size can provide educational support, from publication of key websites and reviewing available literature to establishment of a formal educational program. Join us to explore the options.
Michael M. Harpold, PhD, Chief Executive Officer
Down Syndrome Research and Treatment Foundation (DSRTF)
Down syndrome biomedical research, particularly cognition research involving learning, memory and speech, has tremendous potential to create new opportunities for all individuals with Down syndrome to participate more successfully in schools, lead more independent lives, and to prevent early decline with aging and associated with the early-onset of the pathology associated with Alzheimer's disease. Historically, this significant potential for Down syndrome research has been under-recognized as well as extremely and disproportionately under-funded by both non-governmental and governmental sources. As recently as 2004, there were no defined biomedical mechanisms known to have a direct correlation with cognitive impairment in Down syndrome, and, as a result, no drug targets suitable for drug discovery R&D and therapeutic intervention. DSRTF, a national nonprofit organization founded in 2004, has rapidly established an effective proactive paradigm-shifting and results-driven research strategy with over $4 million generated to support targeted research. This DSRTF-supported research has led to 'unprecedented' progress and success with the identification and pursuit of four new potential drug targets and the amelioration of associated specific cognitive and brain dysfunction in mouse models of Down syndrome. What has made these dramatic research advances possible and what is the significance for children and adults with Down syndrome? How can this momentum be maintained and further accelerated for the development of effective new therapies by leveraging together the Down syndrome community and beyond to support research? This presentation will address these questions and provide an update on the latest research advances and initiatives.
Amy Allison, Executive Director, Down Syndrome Guild of Greater Kansas City
DSG's Parents and Schools in Partnership Program was created in 2004 to provide support and resources to school districts while building strong ties and a high level of trust. Districts were asked to designate a staff person to serve as a Down Syndrome Specialist who would be a liaison between DSG, our families, and the educators in the school district. Down syndrome organizations in St. Louis, Dallas, Memphis. Atlanta, Omaha and Austin have launched this unique program. Attendees will learn how to engage and support educators, how to increase their organizations opportunities to work with schools collaboratively and how to affect positive outcomes and how to launch the Parents and Schools in Partnership Program in their area.
Kathleen Forney, Executive Director, Down Syndrome Association of Minnesota
Since the mid 1990's the Down Syndrome Association of Minnesota has grown at a rate of better than 10 percent annually. The catalyst of that growth has been a highly refined and mature new and expectant parent outreach program which welcomes approximately 75 babies each year. Join DSAM executive director Kathleen Forney to learn how this successful MN program can be tailored to your own area and why her organization has come to believe it has accelerated new parents' ability to cope with their unexpected journey.
Terri Blades, Executive Director, Down Syndrome Association of San Antonio
Maureen Gallagher, Executive Director, Massachusetts Down Syndrome Congress
Lanny Hardy, Executive Director, Down Syndrome Association of Orange County
Elaine Linn, Executive Director, Down Syndrome Information Alliance
This interactive Q&A Panel session with executive directors from around the country will help you get all your burning questions answered. Various size organizations will be represented on the panel to answer questions such as: How do you recruit board members? Where do you go for your printing and how much do you pay? How do you find sponsors and keep them? How do you hire/fire staff? How often do you update your bylaws? Who does your website? Do you charge membership fees? This open exchange will provide you the opportunity to learn what other resources and procedures groups are using which could enhance your organization’s operations.
Harold Kleinert, Ed.D, Director Human Development Institute University of Kentucky
Carol A. Lunney, Ph.D., Projector Director, Brighter Tomorrows
Brighter Tomorrows, a Web-based, multi-media, interactive tutorial, began at the request of parents of children with Down syndrome who felt that other parents and prospective parents could be helped if physicians knew how to provide a diagnosis of Down syndrome with up-to-date, balanced information delivered in an emotionally supportive fashion. As the effectiveness of this tool became more apparent, we received additional funding that allowed us to refine the physicians' version and develop a Family version in both English and Spanish. We will discuss the development of Brighter Tomorrows including the physicians' version, describe key elements of the Family version including sections with Questions and Answers, Life Glimpses of individuals with DS, and Resources for Families, and we will demonstrate various parts of the Family tool
Michelle Whitten, Executive Director, Anna & John J Sie Foundation
Dr. William C Mobley, MD, PhD, Director of Center for Down Syndrome Research and Treatment at Stanford University
How the idea for Linda Crnic Institute for Down Syndrome was created / Identifying the needs of people with Down syndrome across the age spectrum / Focusing in on basic research, clinical research and clinical care / Impacting people with Down syndrome here and now through immediate programs and behavioral research / Key funding sources / Key partnerships / A vision for the future / The status of Down syndrome research / Key research approaches / Hope for significant breakthroughs / Linda Crnic Institute's leadership role in science that will benefit people with Down syndrome / Partnerships / Where funding comes from / How you can help
Jawanda Mast, Board Member, Down Syndrome Guild of Greater Kansas City
Alyson Edwards, Executive Director, Down Syndrome Association of Memphis and the MidSouth
Learn creative and proven ways to show case the ABILITIES of people with Down syndrome at your Buddy Walk. Many of the ideas may be used in other venues as well. At the end of this breakout session, participants will know how to effectively utilize self-advocates at special events and creatively educate individuals from diverse backgrounds about Down syndrome, the abilities of individuals with Down syndrome and available resources.
Audrey Pacca, Sr. Director, State Operations, Best Buddies International
Joe Meares, Best Buddies Indiana Advisory Board Member, Down Syndrome Indiana Board Member
Within many Down syndrome organizations there is a void of programs for middle school, high school, and adults with Down syndrome. Best Buddies HAS these programs which provide opportunities for true friendship, social opportunities and more. Successful models of "partnerships" and programs with local Down syndrome organizations and Best Buddies will be highlighted in this presentation so you can learn how to create and duplicate them in your area.
Sheila Hebein, Executive Director, National Association for Down Syndrome
Participants will learn of the services NADS has provided for families whose children have Down syndrome and Autism or Attention Deficit Disorder in the Chicago metropolitan area for the past 12 years. Their Family Behavior Retreat will be described and the needs of these families will be discussed. Inclusion is a term often used in the Down syndrome community, but many of our families have not felt "included" in our community and this workshop will talk about ways that organizations can serve ALL of their families.
Amy Allison, Executive Director, DSG of Greater Kansas City
Jawanda Mast, Board Member, DSG of Greater Kansas City
Leslie Hernandez Brown, Program Assistant, DSG of Greater Kansas City
Is your group constantly struggling to find volunteers to work events, manage programs and fundraise to support your mission? This session will teach you how to recruit, train and sustain an effective volunteer base which will enhance your organization's ability to serve your members. DSG uses approximately 2000 volunteers each year who give 10,000-15,000 hours' worth of time. Moving your volunteer base away from your members to community volunteers is the best move you can make to enhance you organization and increase your member satisfaction.
Diana Merzweiler, Executive Director, Down Syndrome of Louisville
DSL will share information on their long-range fundraising efforts established in preparation for their building of a state-of-the-art facility devoted to educational programming for individuals with Down syndrome. Last year, DSL received a $1.515 million grant which it continues to add to through efforts with other area foundations and donors. To prepare for the operational costs for the facility and to shift their committed members from event-based giving to planned giving, DSL also launched its annual giving campaign concurrent with its capital campaign. How to establish relationships with community groups and businesses will also be discussed as yet another growing area of fundraising for DSL and possibly for your group as well. Attendees are encouraged to share their own efforts in these and other fundraising areas during the Q&A portion of this session.
Jane Page-Steiner, Owner, JPS Nonprofit Strategies
A common frustration of board presidents and executive directors is the limited participation of some board members. Why does it seem that a just a few board members do all the work? Why is there not better attendance at board meetings? Why aren't there more board members serving on committees? How do you get more board members to participate and support fundraising activities? On the other side of the coin, board members may be just as frustrated because they feel underutilized and are not sure what is expected of them. This workshop will provide participants with practical strategies and tools to use with their board. From strategies for recruiting new members to tools for making sure your board understands what is expected of them. We will discuss a process that not only outlines for board members what is expected of them but we will also discuss how to communicate what board members can expect from your organization. Clear expectations on both sides will limit confusion, build trust and will help you maintain healthy communications with your board
Julie Harmon, John Donohoe, Heather Mitchell, Colorado Springs Down Syndrome Association
Come share and learn with and from other groups that are doing Buddy Walks. We will all work together to see what is working and what others are doing to make Buddy Walk events so successful. In this session we will use the adult learning tool, table top graffiti, to brainstorm what is working for other groups and to share strategies and gain new ideas that can be implemented into current Buddy Walks and/or to new walks.
Madeleine Will, V.P. and Director of the NDSS National Policy Center
Ricki Sabia, Associate Director NDSS National Policy Center
Stephanie Smith Lee, Senior Advisor NDSS
This session will describe strategies for empowering affiliates and their members by utilizing the advocacy information that is provided by the NDSS National Policy Center.
At the end of this breakout session, participants will know how to: Advocate for the issues that are important to individuals with DS in variety of ways (e.g. put info from the Policy Center in Affiliate Newsletters, identify a governmental affairs liaison who will report to their affiliate Board, send ready-made emails to policymakers from NDSS Take Action Center, add an advocacy component to the BuddyWalk, meet with school board members and other elected officials, provide testimony, give input as part of federal or State monitoring of IDEA).
Bridget Murphy, Board President, Down Syndrome Guild of Greater Kansas City
Why do great ideas never get out of the boardroom? Why do great programs flounder? This session will address the obstacles the Down Syndrome Guild of Kansas City has faced in attempting to launch new programs. Unprecedented growth in programming has become a win-win situation for DSG, increasing fundraising and awareness along the way. Board buy-in, multi-layered marketing, infrastructure building, cost analysis and interactive exercises will prepare your organization to say Ready, Set, GO!
Frank Buckley, Chief Executive Officer, Down Syndrome Education International, Down Syndrome Education USA
Dana Halle, Co-Founder and Board Member, Down Syndrome Foundation of Orange County
Most people agree that only with reform will we successfully incorporate our learners with Down syndrome into current educational systems. Demonstrated evidence of interventional success provides the most expedient way to change ineffective practice. Affiliates participating in this session will receive an update on current cognitive, developmental and educational research and learn about no-charge online availability of Down Syndrome Education International's DSII series of books for families and educators. They will also discover DownsEd's new See and Learn program and hear about a new fundraising tool which spreads awareness of the reading strengths in children with Down syndrome while raising money for research, affiliates and schools. Participants should leave the session armed with further information to provide effective education support.
Justin Meredith, Creative Director, Canister
A constant challenge for organizations is motivating their members and gaining support from their communities and sponsors. Many leaders recognize stronger communication and design created by other nonprofit organizations, then fail to emulate or compete with them for attention of the community and medical professionals. Many are intimidated by the cost of creating professional pieces. Many simply do not know how to evaluate what to create or how to judge their efforts' success. Participants will learn how to evaluate their own communication materials, set and measure influence goals, and improve the overall rhetorical design of their communications to better influence their target audiences.
Patricia E. Bauer, journalist and editor of www.patriciaebauer.com
As a Washington Post op-ed contributor and the editor of a popular website about disability news, workshop leader Patricia Bauer has read more than her share of stereotypical and misinformed news coverage. She thinks we can work together with the media to clear away the ignorance, misrepresentations and taboos about disability that often get in the way of the public's understanding of our lives and the lives of our family members. In this session, we will explore what kind of strategies are helpful in building the public's awareness that people with disabilities are people who have rights and are worthy of respect. Pat can also offer tips on the mechanics of getting your message out, using everything from press releases to blogs to Facebook. Want to know how to talk to a reporter? How to plan events that get media coverage? How to shape the public debate? Come to this session!
Beth Finkelstein, Vice President of Education and Programs, National Down Syndrome Society
This session will introduce participants to the new educational initiatives of the National Down Syndrome Society. Participants will specifically be encouraged to apply for two of NDSS's newest grant making initiatives: the NDSS Education Series and a new pilot program that addresses diversity. The NDSS Education Series brings nationally recognized experts in the field of Down syndrome to NYC and shares these presentations with the entire community via www.ndss.org. The new RFP will allow affiliates to apply for seed grants to bring speakers and educational seminars to their local communities.
NDSS also seeks to assist affiliate groups in reaching and addressing the needs of their diverse constituencies. The session will share tips and best practices as well as strategies and resources to offer translation services and an RFP to receive support to conduct local outreach.
Lori Tullos Barta, President, Down Syndrome Association of Central Texas
Through the Inclusive Congregation Initiative, you will be given the tools to partner with local congregations to increase inclusion, educate congregants about Down syndrome, and raise awareness about the termination rate. Do you want to reach thousands of people in one morning? Do you want to pave the way for your members to be more included in worship and religious education? If so, then this session is for you.
Bridget Murphy, Board President, Down Syndrome Guild of Greater Kansas City
In the last five years, the Down Syndrome Guild of Greater Kansas City has doubled our membership, tripled our staff, tripled our office space, tripled our Buddy Walk proceeds, added 14 community groups, hosted a national convention and been named National Parent Group for 2007. This unprecedented growth was made possible through strategic efforts to become a more professionally run organization. Attendees will learn the key decisions, strategies and programs that took the Guild from a "Mom and Pop" support group to an award winning and leading non-profit organization. Attendees will come away with a toolbox of ideas and strategies that will place any Down syndrome organization on the road to success.
Melissa Rowe, Adolescent/Adult Programming Director, Down Syndrome of Louisville
In 2003, Down Syndrome of Louisville launched our Adult Literacy Program as part of our adult educational programming. The program runs year-round and offers an individualized post-high school academic curriculum to adults with Down syndrome in the Louisville Metro area. In this session, we will briefly discuss the structure of the program as well as outcomes of the students who participate. We will also outline many of the academic resources we use with our adult students and make suggestions about materials we recommend (and materials we don't!). Finally, we will suggest how you could begin to implement similar intervention at your community affiliate sites.
Janet Gora, Executive Director, Down Syndrome Association of Greater Cincinnati
Molly Mattheis, School Age Matters Coordinator, Down Syndrome Association of Greater Cincinnati
Advisory councils are intended to connect a non-profit with people who possess unique knowledge and skills and supplement and complement a board's work. Nonprofits are increasingly turning to advisory councils for a variety of reasons from raising funds to raising awareness. At the end of this breakout session, participants will know how to:
- Evaluate whether an advisory council is right for their organization,
- Ascertain what kind of advisory councils would help the most
- Identify and recruit members with the expertise, skills and experience needed
- Write a Statement of Purpose and Organization
- Recognize common problems with advisory councils
- Create ongoing communication between the board of directors and the advisory council
Brian Skotko, M.D., M.P.P., Board of Directors, National Down Syndrome Society
In this presentation, Brian Skotko will provide an update on the latest advances in prenatal detection of Down syndrome. The presentation includes highlights from his publications in Pediatrics and American Journal of Obstetrics and Gynecologies and includes "take-home" recommendations on how physicians can more effectively and compassionately deliver difficult news to new and expectant parents. Parent support groups will receive multiple ideas on how they can be making a difference in both big and small ways. At the end of this breakout session, participants will know how to organize effective outreach efforts regarding the prenatal diagnosis of Down syndrome and find and utilize national resources for such efforts.
Justin Meredith, Creative Director, Canister
Online technologies are often misunderstood or unknown by many affiliates. Learn how to better communicate with your board, members, and surrounding community through email, online newsletters, shared sites, and general information management. We will discuss discerning the return on costs for online or printed communication and how to decide when to use each. The discussion of tools will largely include either free/open source programs or common software or tools that affiliates already have in their possession. Our goal is for affiliates to learn to better use the tools they have or know when to replace them with a specific substitute.
Sarah Schleider, VP of Marketing & Communication, National Down Syndrome Society
Participants will learn how to successfully contact local media (including radio, TV, print, and online editors) and secure coverage for local news and events. They will also learn how to develop and implement successful local cause marketing programs that seek to raise awareness and funds.
1) Public relations: what it is, how to contact the media, when to contact the media, how to secure local news stories, how to get your events posted in local event calendars, how to write a press release, how to track your editorials, how to measure the ad value. 2) Cause marketing: what it is, examples of successful cause marketing programs, how to develop and implement local programs to raise awareness and funds.
Melissa Rowe, Adolescent/Adult Programming Director, Down Syndrome of Louisville
Down Syndrome of Louisville launched its employment placement program, "Career Solutions", in September 2007. Since that time, we have assisted nearly 15 adults with Down syndrome gain career-oriented employment in our community. Our progressive, person-centered approach to employment will be discussed along with personal success stories of some of the people we have placed. Our role during the high-school transition process with these students will also be discussed. In addition, we will demonstrate how other affiliates sites can either begin a similar program in their area or request similar employment planning from agencies in their community.
Dr. Jennifer L. Kimes, Director of Early Education & School-age Programming, Down Syndrome of Louisville
This presentation will describe an education program for Elementary school-age children with Down syndrome created and implemented by Down Syndrome of Louisville, Inc. The history, goals, program development and program format will be outlined. Direct educational services, including children activities, parent activities, educator materials, and partnership with same-age typical peers will be discussed in depth. The provision of outreach and advocacy services, including private and public school consultation, teacher education, and representation at the school district level will be reviewed. This multidimensional program addresses the needs of various systems, including educational and developmental needs of the children, education and support needs of caregivers, informational and training needs of educators and school systems, and the needs of the local community for diversity representation and exposure. Description of school-year and Summer programming including the program schedule and components will be provided. Success stories with regional school districts with also be discussed.
Beth A. Savage, CPA, Treasurer, Down Syndrome Association of Central Ohio
Marge Barnheiser, Administrative Director, Down Syndrome Association of Central Ohio
A report published in the December 2007 issue of Nonprofit and Voluntary Sector Quarterly found that losses to fraud among the 58 cases reported to the Association of Certified Fraud Examiners in a random survey of nonprofits, ranged from $17 to $200 million, with the median fraud costing $100,000. It's in the news more and more - volunteers and employees stealing funds from non-profit groups. In this session, you will learn about the experience of one affiliate group with a significant embezzlement situation. The intent is to share such information in the hope that our open discussion will allow another affiliate to better protect their own organization and reduce their risk of fraud/embezzlement. At the end of this breakout session, participants will know how to:
- Identify "red flags" that may indicate potential fraudulent activity
- Understand certain basic internal control policies and procedures to minimize risk
- Take action and manage the situation if your organization has been impacted
Carolyn Ajie, LCSW, Scott Quicke, LPC Denver Adult Down Syndrome Clinic
In this session we will discuss the vision and development of ALIVE! and present a short film of a class in session. ALIVE! is weekly, interactive continuing education for adults with Down syndrome focused on enhancing and developing essential life skills that promote independence, self-esteem and self- advocacy. ALIVE! explores a variety of topics to reinforce and practice important life skills and social concepts in a dynamic, fun and meaningful way. At the end of this breakout session, participants will understand the vision, goals and objectives of ALIVE! and be able to develop an adult education and enrichment program in their home community using the ALIVE! model.
Brian Finn, Director, MetDESK
Kelly Piacenti, Director, MetDESK
This session will provide you with information regarding MetDESK's special needs estate planning division and how their trained specialists can share important information with your members regarding special needs trusts, guardianship, conservatorship and letters of intent. The presenters will also identify ways specialists can partner with your organization as volunteers or board members to help you fulfill your mission.
Stephanie Smith Lee, Senior Policy Advisor, National Down Syndrome Society
Madeleine Will, Vice President, National Down Syndrome Society Policy Center
During this session, participants will hear from nationally-recognized experts about exciting new post-secondary opportunities for students with intellectual disabilities, the key components of high-quality inclusive programs, and successful strategies for developing new programs. Important features of several model programs will be highlighted, options for funding students and programs will be discussed; and promising new legislation and federally-funded research and technical assistance centers will described. Laura Lee, a young woman with Down syndrome who successfully completed a postsecondary program, and is currently involved in a new vocational pilot, will talk about and show photos of her experiences.
Kirk Crowther, Advocacy Leadership Manager, Canadian Down Syndrome Society
Dale Froese, Chairperson, Voices at the Table Advocacy Committee (VATTA), Canadian Down Syndrome Society
This session will demonstrate how an organization can effectively include the voices of self-advocates. The Voices at the Table Advocacy Committee chairperson will demonstrate how a group of self-advocates can affect supportive changes to an organization and create new visions with a focus on personal perspectives. The role advocates play in directing the work of an agency or organization is identified. The presentation will demonstrate strategies for self-advocates and organizations that want to include people with Down syndrome in their work. At the end of this breakout session, participants will know how to: Include self-advocates effectively within their organization. This includes procedural changes to organizations related to self-advocate participation and inclusion by doing things differently.
Becky Switalski, National Buddy Walk Director, National Down Syndrome Society
Sarah Schleider, VP of Marketing/Communications, National Down Syndrome Society
Pamela Sandonato, Director of Development, National Down Syndrome Society
This session will cover a brief overview of the past two Buddy Walk™ seasons as well a look to the future. We will also take a look at how the Buddy Walk has changed the Down syndrome community over the past 14 years, including how both NDSS and local groups use the funds raised through this event. The main focus of the presentation will be on how to best market and publicize your Buddy Walk. Part of the session will give tips on writing and distributing press releases and contact the media. There will also be a panel of walk organizers whose events have been very successful in securing media sponsors, media coverage and promoting their events.
Brian Skotko, M.D., M.P.P., Board of Directors, National Down Syndrome Society
Through a series of interactive exercises, parents will explore what questions, needs, and concerns are often raised by children who have a brother or sister with Down syndrome. Parents and/or professionals will come away with practical answers to commonly raised questions. This presentation draws upon Brian Skotko and Sue Levine's publication in American Journal of Medical Genetics. This workshop will further offer tips on what parent affiliate groups can be doing for brothers and sisters in their areas. At the end of this breakout session, participants will know how to organize effective outreach efforts for brothers and sisters of siblings with Down syndrome and how to find and utilize national resources for brothers and sisters.
Gena Mitchell, President, Down Syndrome Network of Montgomery County, MD
Christina Smith, Executive Director, The ARC of the Mid Ohio Valley
Denny Weikert, Friends of Frederick County, MD
We will present the process of creation for the Regional Council. We will present timelines, task items and how to get the most out of having a Regional Council. We will also discuss the purpose of a RC and what we have been able to accomplish. At the end of this breakout session, participants will know how to:
- Establish a Regional Council
- Have a clear understanding of what to do and what not to do when meeting
- How to get the most out of a Regional Council
Ricki Sabia, Associate Director National Down Syndrome Society Policy Center
This session will provide affiliate leaders with a basic understanding of Universal Design for Learning (UDL) and how affiliates and parents can advocate for UDL implementation at the Federal State and district level. It will also provide tips on how to implement the principles of UDL through the IEP process while we are waiting for full implementation of UDL to occur. Participants will know how to advocate at the Federal, State and district level for UDL and how to incorporate elements of UDL into IEPs
David Forney, 4th Vice President, Communication Director, NDSC
Lanny Hardy, Executive Director DS Assoc of Orange County and Board Member, NDSC
This workshop will explore how local and regional Down syndrome organizations can extend and expand the national awareness campaign for Down syndrome by securing placement of public service announcements with print and television media. We will also discuss how the key messages of the campaign and its theme can be incorporated into events, brochures, newsletter and other communication vehicles. Examples will be used from many Down syndrome organizations while offering a detailed case study on how the Down Syndrome Association of Orange County has made regional deployment of the campaign a major initiative.
Joshua Stein & Jenni Newbury, Co-Founders, Co-Directors of Camp PALS
Camp PALS, a weeklong summer camp run by all-volunteer college-age staffs and winner of the 2004 President's Award from the National Down Syndrome Congress, is a program that provides teenagers and young adults with Down syndrome with the best summer of their lives. Camp participants live in dormitories, travel to the beach, try new activities like yoga, tennis, photography, and more, and enjoy an end-of-camp dance. But beyond the amazing trips, the enticing games, and fun experiences lies a model that actively produces more confident, energized, and independent self-advocates and highly dedicated, politicized, peers through a specially conceived one-on-one pairing process. In this multi-media session, the program will be discussed and the model will be analyzed. Ways to get involved will be provided, including how to "start your own Camp PALS." Time for a question and answer session will be allotted.