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  • Tue, January 10, 2017 9:51 AM | Anonymous member (Administrator)

    Massachusetts Down Syndrome Congress (MDSC) has built an employment initiative that engages employers and opens doors for good, meaningful jobs for the self-advocate members in their community. "Your Next Star" was launched two years ago and is a clarion call for employers to diversify their workforces by including people with Down syndrome and other disabilities.




    "We're talking about the positive benefits that people with Down syndrome bring to an organization," said MDSC Communications Director Josh Komyerov. "They add to the organizational health of the employer. The organizational health of leadership, client satisfaction, motivation - all those things are huge benefits to hiring people with disabilities."

    Employers are learning about these benefits through the "Your Next Star" awareness campaign. This comprehensive outreach initiative, which includes a website, forums and community partnerships, educates organizations and create buzz among the employment community about the importance of disability diversity. Komyerov explains: "Your Next Star is not job matching. We target employers directly - that's where it's unique. We're telling employers that Your Next Star could be someone with Down syndrome."




    Before the campaign started, MDSC identified a interesting trend: The level of education reached by adults with Down syndrome did not really match the quality of jobs they were being offered. In response, MDSC partnered with a government employment agency and set out to show employers first hand the full and diverse view of their potential workforce and the benefits of hiring a person with Down syndrome.

    Executive Director Maureen Gallagher with Komyerov are co-presenting a session at the DSAIA Leadership Conference in Cincinnati Feb 23-26  to further explore with DSA leaders the benefits of a diverse workforce, innovative approaches to hiring people with disabilities, and examples of successful employers and approaches that lead to success. 

    For more information on Your Next Star, visit www.yournextstar.org.



  • Mon, December 12, 2016 10:37 AM | Anonymous member (Administrator)


    Oscar winners and sports legends teamed up with self-advocates in November to promote Down syndrome awareness and acceptance at Global Down Syndrome Foundation's annual Be Beautiful Be Yourself Fashion Show. Queen Latifah and Jamie Foxx were joined by Hilary Swank, Matt Dillon, John C. McGinley, Amanda Booth, and Peyton Manning at this incredible event on Nov. 21 that raised over $2.1 million for critically needed funds for research. 

    Deanna Tharpe, DSAIA Executive Director and Mac Macsovits, DSAIA Board President at the Be Beautiful Be Yourself Fashion Show



    The event is the single largest fundraiser benefiting individuals with Down syndrome. Proceeds help fund over 30 labs and 100 researchers at the Anshutz Medical Campus the University of Colorado-Boulder, as well as the Sie Center for Down syndrome at Children's Hospital Colorado. 


    Michelle Sie Whitten, Global Down Syndrome Foundation co-founder and president/CEO, imparted these thoughts for the future: "I'll know my work is done when parents like me can close our eyes and leave this world without fear - knowing that our children will be accepted, independent members of society."

    Michelle's daughter, Sophia, is the inspiration for GDSF and its remarkable body of work. 

    For more information on the event or the foundation's work, visit www.globaldownsyndrome.org



  • Mon, December 12, 2016 9:42 AM | Deanna Tharpe (Administrator)

    Why is the Every Student Succeeds Act (ESSA) so important for students with disabilities? What is the connection between ESSA to IDEA implementation? And how does it affect your child's IEP?  Plus...how can you as part of the Down syndrome community effectively advocate at your state level when it comes to ESSA?

    As part of a joint collaboration between Down Syndrome Affiliates in Action, the National Down Syndrome Congress and the National Down Syndrome Society, there will be a three-part webinar series on the Every Student Succeeds Act (ESSA), which will be presented live on three consecutive Thursdays in January at 8-9pm Eastern Time. The first webinar in the series will occur on January 12, 2017. 

    The presenters will be NDSC Senior Education Policy Advisor, Ricki Sabia, and NDSS VP of Advocacy & Public Policy, Heather Sachs. The two subsequent webinars will get into much greater detail about how to use ESSA with IDEA to support high expectations at your child's IEP meeting and how to advocate in your state for strong ESSA implementation. 

    Register today by clicking here. And feel free to share this learning opportunity with other Down syndrome community leaders and parents!

  • Thu, November 03, 2016 10:39 AM | Anonymous member (Administrator)

    You can win a gift basket of holiday cheer. And it's so easy. Submit a speaker to our directory, and you will be added to a drawing for one of three Harry & David holiday gift baskets. 

    We are accepting recommendations for both internal development (for your board/staff) and external information (parents/educators/physicians). More categories will be added as speakers are added. Enter in three simple steps:


    At DSAIA, we know that providing your families and other stakeholders with quality speakers at your local events, workshops and conferences is important to you. Retaining speakers can be costly, and that is why it is so important to learn from other members about their experiences with speakers.

    Here's another way you can contribute to the success of the speaker directory. If you see a speaker in the directory that you have personally had present for your organization, please submit a review in the box below their information.


  • Tue, October 04, 2016 10:04 AM | Anonymous member (Administrator)



    After 20 years of holding awareness walks, you would think that the Down Syndrome Association of Wisconsin (DSAW) would know how to throw an awesome party that people in DS community would want to be a part of. And you would be right!


    Almost 2,000 people filled the Milwaukee Zoo to celebrate the 20th anniversary of the DSAW Awareness Walk. Dressed up in a super hero theme, the Walk was not unlike a giant birthday party, with an enormous cake, carnival games, crafts and live music. A self-advocate showcase introduced with celebrity fanfare the teens and adults with Down syndrome, who entered by red carpet to cheers and high fives.


    "I [am] passionate about including and re-engaging families with older children and adults with Down syndrome," said DSAW Executive Director Dawn Nuoffer. "We wanted all ages to feel excited about being at [our Awareness Walk]."


    And the numbers proved it. DSAW's Awareness walk saw an increase of 600 more participants and a 30% increase in fundraising revenue. 


    Like most walks, DSAW's started small and simple and grew a little bit each year. They didn't focus as much on the event bells and whistles, but more about making the walk about the families and the community coming together for Down syndrome. 20 years later, it continues to be all about the families.


    20 years of walks also means a lot of trial and error. So Dawn provided some humble advice for other DSA Awareness Walks:

    1. Keep it simple and small, especially in the beginning.

    2. Couple your walk with a natural destination or family attraction to draw in more attendees (DSAW holds their walk at the local zoo.)

    3. It's not going to be perfect. Even after 20 years, we're still figuring things out. We always will find things to improve or do differently.

    4. Have fun with it. Don't take yourself so seriously. You're going to improve every year. Focus on the families coming together. The attendees don't see the little things that go wrong. It's the intention and enthusiasm they go home with.

    5. Fundraising is important, but the tangible return is the relationships. Generating enthusiasm for our mission to then interest people in philanthropy.

    6. Launch your site early - at least four months before your walk to give people time to procrastinate.

    7. Find different ways and different times to tell your story throughout the year - not just during Walk season. This way the Walk isn't about awareness of your organization, it's all about people with Down syndrome.

    8. Have a really cool t-shirt with fun graphics and colors, where sponsors will want to see their logos, that people will want to wear all the time.


  • Thu, September 01, 2016 2:08 PM | Anonymous member (Administrator)


    Story by Lindsay Radford

    What happens when a child with Down syndrome ages out of after school care, but they aren’t ready to be home alone?  It’s a tough question for parents, which is why the Red River Valley Down Syndrome Society’s answer is a true gift to its families.

    The organization is running an After-School/Summer Recreation Program for children and adults with special needs, plus their siblings.  “The goal of the program is to help each child and adult build their academic, social and emotional skills or any other skill the person is working on.  The difference is we do it in a recreational way,” said Krissy Crites, Executive Director of the Red River Valley Down Syndrome Society. 

    The Johnny Stallings Recreation Program, which just wrapped up its first year, provides activities and tutoring between 2:30-6:00 on weekday afternoons for anyone between the ages of five through adulthood.

    “The adult programs in our community wrap up at 2:00 pm.  Some people can go back to their homes, but others faced the same problem our students did,” said Crites.  “It wasn’t safe for them to be home alone.  That’s when we decided to open the program up to adults, too.” 

    This ambitious project didn’t happen overnight.  It took three years of planning, from buying a building from a local school district, to renovating it, to becoming a licensed child care facility, to laying out the curriculum.  The association paid $60,000 for the school building, plus another $130,000 for renovation work.

    “We had a lot of help getting it going.  There were ups and downs and I shed a lot of tears over it, but it’s a huge benefit for the community,” said Crites.  “I’m hoping other organizations would like to see what we offer and say, wow, we can do that.  I’m happy to share the plans!”

    The center spans 7,300 square feet, includes a recreation room for the teenagers and adults, complete with a pool table, play station, air hockey tables and more.  “We wanted to make sure the kids feel like they are teenagers and they are treated that way,” Crites said.  “It’s like a club where they can hang out.”


    In addition, there is an enrichment room, where the center hosts its cooking, dancing, art and exercise classes throughout the week, providing additional educational opportunities for the students.  The perks don’t end there.  The center also has a homework room, where students can work with a certified special education teacher.

    The cost to parents is $35 per week for the first child, then $20 per week for the second child and $15 for any child after that.

    Crites says the success of the program is reflected in the stories she hears from parents:

    “We had a young man with Down syndrome, Isaiah, who really struggled with communicating his feelings.  For the first three or four weeks he came to the center, he would throw his backpack down and lay on the couch.  He wouldn’t participate in the projects, so we’d bring them to him on the couch.  He was intimidated to be around all the kids.  Then things began to change.  His mom told me she had never seen her son so interactive at home.  Now he actually hangs out with his siblings and enjoys being social.  She said that change was all due to his time at the center.”


  • Thu, September 01, 2016 1:48 PM | Anonymous member (Administrator)

    How can teams fundraise for your local Awareness/Fundraising Walk? Let us count the ways. Team fundraising doesn't have to feel like a chore or a burden - it can be a lot of fun. Here are 85 creative ways your Awareness/Fundraising Walk teams can boost their dollars raised. It's divided into sections 1. Involve the Community, 2. Host an Event, 3. Boost Outreach, 4. Use your Talents.


    1. Involve the Community.
    2. Corporate Matching: Ask your company to match donations made by other employees.
    3. Garage Sale: Ask friends to donate items for a garage sale. The profit is your donation.
    4. Mow-a-Thon: Get neighborhood kids involved. Mow lawns for a $20 donation.
    5. Fundraising In your Office: Your workplace is a great venue to find support.
    6. Tribute Pledges: Ask people to make a pledge in honor or memory of someone.
    7. Waiters: Ask the servers in your favorite restaurant if they will donate one day's tips.
    8. Change Jar at Local Restaurant: Ask your favorite restaurant to put out a jar for donations of spare change.
    9. Local Sponsor: Identify and ask a local company to sponsor your team.
    10. Delegate: Ask 10 friends to email 10 of their friends about joining your Walk team.
    11. Easy Hundred: Ask 10 friends for $10 in 10 days.
    12. Ask your doctors or dentist for pledges.
    13. Ask your chiropractor, therapist, or yoga instructor.
    14. Ask your lawyer or insurance agent.
    15. Ask your child’s school teachers.
    16. Swear Jar: Every time a family member or co-worker swears, have them pay a dollar to your fund.
    17. Used CD Drive: Collect old CDs from friends or your basement and take them to a CD Exchange for cash.
    18. Free Rent: Get your apartment complex to donate one month's rent to sponsor you.
    19. Tip Jar: Get business to put out a "tip jar" at the register. Put a picture of the person with Down syndrome whom you may be walking for.
    20. Join/Start a walking club and every time someone misses a walk have them contribute $5!
    21. Radio Station: Call your favorite radio station and ask them to make an announcement on the air and to interview you. People can send pledges directly to you.
    22. Gym: Ask your gym if they can teach a Zumba or Pilates class with the proceeds going to your Walk team.
    23. Hair Salon: Ask your hair salon if they would donate $2 of each hair cut over a weekend to you.
    24. Extra Change: Empty pocket change every day into a donation box. Give decorated donation boxes five friends and ask them to join in.
    25. Wristbands: Sell or "give away"awareness wristbands for a donation.
    26. Certificates: Ask a local business to sell a service or package at a reduced rate (e.g., $20 for a $40 oil change). Create certificates that can be sold ($30 for a $40 oil change) and the team keeps the profit.
    27. Dollars for Down Syndrome: Have postcards printed up that look like Dollar Bills. Partner with a grocery store or coffee shop to sell them for $1 or more. Sold cards are displayed in the store.
    28. Dress Down for Down Syndrome: Employees pay $5 to dress down one day at work.
    29. Dimes for Down Syndrome: Kids collect dimes and other pocket change from classmates at school.
    30. Crazy Hair Day: Employees pay $2 to wear their hair in a crazy way throughout the work day.
    31. Host an Event
    32. Theme Dinner: Hold a themed dinner event for 10 of your friends. The ticket is a $50 donation.
    33. Car Wash: Hold a car wash either in your neighborhood or at work.
    34. Benefit Concert: If you know musicians, ask them to perform a benefit concert. Admission = donation to [local DSA].
    35. Movie Party: Hold a movie party at your house/apartment. Pick a code word and every time that word is said in the movie, everyone antes up $1 in a pledge bowl.
    36. Birthday: In lieu of gift for your birthday, ask your friends and family to make a pledge.
    37. House Warming Party: In lieu of a gift for your house warming, ask for donations.
    38. Wedding: In lieu of gifts, ask your friends and family to make a pledge.
    39. Costume Party: Host a costume party in October. If a guest doesn’t wear a costume, fine them $21 made payable to your local DSA.
    40. Gala Night: Host an elegant or formal party.
    41. Karaoke Nights: Collect a pledge for each song you sing.
    42. Have a Wine-Cheese Tasting Party: Have your guests bring a donation and a bottle of wine to share.
    43. International Food Tasting Party
    44. Sweets Party
    45. Bake Sale at Work
    46. Pet Birthday Party
    47. Retirement Party
    48. New Job Celebration Party
    49. T.V. Show Party: Gather friends for the premiere of your favorite show.
    50. Dance a-thon
    51. Disco Night
    52. Chef night: Offer to cook for your friends in exchange for cash!
    53. Host a Picture Party: Share your family pictures and others with friends.
    54. Host a Movie Theme Night
    55. Popcorn Party: Show a new release video and charge $6 at your home.
    56. Monopoly or other Game Night
    57. Poker for Pledges: Host a poker night or card game where players' "buy-in" goes to your Walk team.
    58. Pizza Nights: Ask your local pizza place to donate pizza, and ask friends for $7 at the door, all you can eat.
    59. Bowling Nights
    60. Chili Cook-Off: Charge an entry fee for dinner and have a cook-off with your friends.
    61. Boost Outreach
    62. Voice Mail: Change your voice mail message to include your participation in your fundraising/awareness Walk and how people can help.
    63. Labels: Create return address labels that state "I'm participating in the [walk name] for the [local DSA]. Will you sponsor me?"
    64. Pin: Create a pin that says "ask me about the [walk name]" and wear it around town!
    65. Social Networks: Post a message on your favorite social media page (Facebook, Twitter, Instagram etc) asking your friends to support your efforts.
    66. Colored Pledge Forms: Print your pledge form on colored paper so it will stick out in a stack of bills and other correspondence.
    67. Email Signature: Include your team name in your email signature.
    68. Business Cards: Make up business cards with your Walk information - your name and address to send donations to or the web address. Hand them out to everyone you meet.
    69. Share the Passion: Tell your story. The more you talk about your why you’re involved in your Walk, the more people will share in that excitement and want to donate or join your team.
    70. Classmates: Ask your child’s teacher if she can send home a Walk flier in his/her classmates’ backpacks.
    71. Dear Neighbor: Write to all your neighbors on your block or in your apartment building or complex. Attach an update on your fundraising progress.
    72. Meet The Press: Get an article in your company newsletter. Ask them to publish an article about you in which you request support.
    73. Your Town Newspaper: Get an article in your home-town newspaper.
    74. Bulletin Boards: Post your Walk flier on bulletin boards at the gym, community center, coffee shop, etc.
    75. Use Your Talents
    76. Personal Assistant: Offer to be your friends' and coworkers' personal assistant for a day (or few hours) in exchange for a $250 donation.
    77. Make-Up Artist: If you are a make-up artist, do $75 donation makeovers.
    78. Photographer: If you are an artist/photographer, do portraits for pledges.
    79. Baby-sit
    80. Pet-sit
    81. House-sit
    82. Water the Garden: Or any chores you or a family member would normally do for free for neighbors, friends or family, this time, ask them for a team donation.
    83. Personal Vending Machine: Take a trip to the store and load up. Let your co-workers know to come to you instead of heading to the machine.
    84. Computer Graphics: If you are good with computers make nice cards and give them for pledges.
    85. Temporary Tattoos: Give a Buddy Walk temporary tattoo to your friends for pledge.
    Many of these ideas are from DSAIA members. And many of the ones that are more complex have actual templates in the DSAIA Resource Library! Check it out today!




  • Thu, September 01, 2016 1:44 PM | Anonymous member (Administrator)

    Recruiting board members is getting harder. According to BoardSource's recent Leading with Intent Report, nonprofits boards are recruiting for three positions on average. And 58% of chief executives say it is difficult to find people to serve on the board. That is why board development needs to be a top priority.

    In order to make the board training process simple and easy-to-follow, DSAIA has created its own online learning center to allow members to follow a more in-depth training series at a pace that works for their busy schedules. Two courses have already launched in the learning center, one of which is the highly-lauded Board Development Series.

    This board development series is aimed at creating productive and engaged board members. The series guides organization top leadership through board orientations, fundraising, communicating roles and responsibilities and strategic planning.  This series breaks down into manageable sections of 15-20 minutes, a great fit for board development within the monthly board meeting. 

    Register for the Board Development Course or the Donor Development Course today. All courses are offered at no charge to DSAIA members. Nonmembers can purchase courses with special offers for membership included. And watch for more DSAIA Online Learning Center courses to be added in the coming months. 

    According to BoardSource, raising overall board performance from positive to very positive means investing in board education to improve effective governance. For members of DSAIA, that investment of money has already been made. The only investment left to make is time/effort.


  • Tue, August 02, 2016 8:55 AM | Deanna Tharpe (Administrator)

    (July 19, 2016) CINCINNATI/WASHINGTON, DC­ – The Down Syndrome Affiliates in Action (DSAIA) Conference and National Down Syndrome Society (NDSS) are thrilled to announce a collaboration between the DSAIA and NDSS National Buddy Walk® Organizer’s Conference. This first-ever collaboration will bring more education and leadership-growth opportunities for affiliate leaders, advocates and individuals dedicated to the Down syndrome community. In February 2017, Down syndrome affiliate leaders, whose organizations hold a Buddy Walk®, can attend both annual conferences during the same weekend in the same location for a reduced rate.

    The dual-conference weekend will take place in Cincinnati, Ohio at the Westin Cincinnati (21 E 5th St, Cincinnati, OH) from Thursday, Feb. 23, 2017 to Sunday, Feb. 26, 2017. The Buddy Walk® Conference will kick off the weekend on Thursday, Feb 23, followed by the multi-day DSAIA conference Friday, Feb. 24-26, with registration and pre-conference sessions beginning Feb. 23, 2017.

    In addition to exclusive access to the information and new ideas shared at both conferences, attendees also will enjoy the benefit of conference registration fee savings. Individuals who register for both DSAIA and Buddy Walk® Conferences can save as much as $225 on their cost of registration.

    “DSAIA and NDSS have engaged in a powerful partnership that brings together two elite educational conferences for Down syndrome affiliates,” said Deanna Tharpe, executive director of DSAIA. “Together, our conferences can further expand attendees’ knowledge, networking and leadership opportunities beyond what our conferences could accomplish individually.”

    ”NDSS is honored to enter into this first-ever partnership with DSAIA, and is excited to serve as the Platinum Sponsor of the 2017 DSAIA Conference in Cincinnati, Ohio. Our National Buddy Walk® Program is the largest public awareness initiative in the world that raises over $14 million for the collective Down syndrome community, and it allows us to be the largest national nonprofit in the US dedicated to advocating for the human rights of all individuals with Down syndrome at the federal and state level,” said NDSS President Sara Hart Weir.

    The DSAIA Conference is focused on improving the way Down syndrome organizations deliver programs and services as well as function as successful nonprofits. The annual conference helps deepen the connection between Down syndrome leaders across the entire Down syndrome community while allowing participants to learn and network with the best in our community. DSAIA holds its 10-year-old conference in a different major U.S. city each year. Last year, Charlotte, N.C., hosted the conference.

    The annual Buddy Walk® Conference brings together Walk organizers from across the country to share ideas and best practices at the exclusive meeting. NDSS has held the past nine Buddy Walk® Conferences in various locations across the country as well as in Washington, D.C., where the conference has been held the past five years.

    ###

    About DSAIA

    Organized in 2006, Down Syndrome Affiliates in Action started as a conference bringing together outstanding leadership from Down syndrome organizations around the country. After consecutive years of explosive attendance, the conference has extended its reach internationally and formed the trade association to continue its mission. The purpose of DSAIA is to serve Down syndrome affiliates through collaboration, resource sharing, and networking.

    About NDSS

    The National Down Syndrome Society is a nonprofit organization with more than 375 affiliates nationwide representing over 400,000 Americans who have Down syndrome. The mission of NDSS is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.  NDSS envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities. For more information, visit www.ndss.org. 

    To register for the conference (or just to learn more), visit the DSAIA 2017 Conference webpage here.

  • Tue, August 02, 2016 8:52 AM | Deanna Tharpe (Administrator)


    By Deanna Tharpe

    There are more than 1.5 million nonprofit organizations in the United States with an estimated 20 million board members at the helm. This statement comes from the Stand For Your Mission campaign started two years ago by a coalition of national organizations focused on nonprofit issues and resources. In addition, nonprofits employ more than 10% of the American workforce and represent roughly $1.65 trillion in annual revenues! But here's the real scoop: According to BoardSource's "Leading with Intent" report, only 33% of organizations report that their board members are actively involved in advocating for their missions. While the campaign's main focus is advocacy, DSAIA sees another key message emphasized: Board members are integral to creating the vision and mission of the organization and disengaged board members are not ambassadors.

    Because DSAIA understands the importance of the board in the DS nonprofit (regardless of staff), we strive to provide essential training for board members. Continually working on new and informative webinars and resources is a top priority and one aspect of our mission that we take very seriously. It's time to stand for our missions. At DSAIA we believe:

    • It's time for our boards to be fully engaged in both leadership and fundraising.
    • It's time for our boards to be the absolute best they can be.
    • DSAIA is here to help our members' boards do just that.

    Over the next few months, DSAIA will post on social media regarding this initiative. Many posts will serve as reminders that DSAIA's webinar archive and resource library house hundreds of great resources that will help your local DSA board reach its goal of 100% participation and top-notch advocacy in its community. Read more about the initiative here.


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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

About DSAIA

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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