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  • Mon, January 14, 2019 8:48 AM | Deanna Tharpe (Administrator)

    Guest blogger - Linda Lysakowski, ACFRE, author of numerous nonprofit & fundraising works, speaker at the upcoming DSAIA 2019 Leadership Conference

    Okay, what other options do we have?

    Nag Them at Every Board Meeting?

    I’ve attended a lot of board meetings and have often seen the board chair, usually with an uncomfortable look, say, “Okay you know we all have to make a financial commitment and so far, we’ve only had 60 percent of the board make pledges.  Does this work? What do you think? What I’ve observed is there are usually a lot of board members shifting around in their seats, a few looks of haughty derision (“I’ve made my pledge, have you?”), a couple of people stammering an explanation or apology, “Oh I thought that was by the end of the year,” or “I lost my pledge card,” or, “Oh yeah, I wanted to send it in but I forgot.”

    Threaten to Fire Them?

    So, what do you do with the board member who does not give? “You’re fired!” Wait a minute. Can we even fire board members? Yes, you can. (See Simone Joyaux’s masterpiece, Firing Lousy Board Members) or watch her webinar on the topic in STACKS. But it is a process that requires much consideration.  A decision to fire a board member wouldn’t happen solely on their inability or refusal to contribute. What other benefits do you gain by having them on the board? Is there a valid reason they are not giving? You need to have a private discussion with these board members and perhaps give them options—monthly giving, or a pledge to be paid later, or a smaller gift than they were asked for. However, don’t let them off too easy either.

    I worked with one board during a capital campaign and one of the board members refused to make a pledge to the campaign. The board chair said, “Okay we know it’s important to have 100 percent board giving to this campaign, so I’ll make a pledge in Gary’s name.” Seems like an easy out, huh? But is it a legal, ethical, wise thing to do? While there is no legal reason this cannot be done that I am aware of, it is certainly not ethical nor is it wise to set this type of precedent. Ethically, you cannot say you have 100 percent board participation if you don’t. And do you really want to set a standard like this? Pretty soon, other board members will say, “Well I don’t want to give, I’ll just let Jack make a gift in my name.”

    Shame Them?

    One organization I know has a poster in the board room, listing each board member by name and the amount of each board member’s annual gift, contributions they’ve made to the organization’s two annual events, and gifts they’ve obtained from others. While this might be looked at as a tactic to shame board members into giving, it can also serve to inspire them and foster a healthy sense of competition. It might work for your organization.

    Inspire them?

    Another organization conducted its annual staff appeal at the same time the annual board appeal was being conducted. When the results of the staff appeal were announced at a board meeting, the board was shocked to find out how much was raised from the staff, which consisted of mostly social workers. The board chair said, “Wow, folks that is amazing, I think we board members better pony up.” Several board members increased their pledges on the spot.

    While these may seem like shame tactics, it served to inspire the board.

    Another way to inspire your board include educating them about fundraising. One thing you can do is hold a “mission moment” at each board meeting where they hear from program staff about the work your organization is doing and how it is changing and/or saving lives. This makes them want to support your efforts and makes them feel part of the mission and vision. You can also have some educational sessions on the importance of fundraising, and especially how important their giving is to set an example for others. You might want to bring in a board member for another nonprofit whose fundraising is extremely successful and have this board member talk to your board about how board giving made a difference in their fundraising success.

    So, what is the best way to ask board members? Funny you should ask! In my upcoming presentation for DSAIA 2019 ("Building a 5 Star Board") I’ll explain the annual board appeal.

  • Mon, January 07, 2019 10:55 AM | Deanna Tharpe (Administrator)

    Guest blogger - Linda Lysakowski, ACFRE, author of numerous nonprofit & fundraising works, speaker at the upcoming DSAIA 2019 Leadership Conference

    I’ve seen the good, the bad, and the ugly when it comes to asking board members for their financial commitment.  So, when and how should the ask be made? Let’s talk about some options.

    At Recruitment?

    I’ve always stressed that you need to raise the issue of board giving during the recruitment process. So, is this the time to ask for the gift? No. It’s too soon. Board members are just hearing about the expectations in many areas such as attending meetings and events, the fiduciary responsibility, and their financial obligations. In fact, they may say no to serving on the board so it’s really too soon to ask for a board gift! Or you may decide they aren’t good board material. Even if there is mutual agreement that board service is the right move for this prospective board member, you don’t want to whip out a pledge card and expect them to sign it on the spot. Let them know, instead, how and when they will be approached for a gift.

    At Orientation?

    So, let’s wait and ask them at orientation. That’s a good plan, right? Wrong! During orientation, board members should be focused on absorbing information from the various briefings they received—programs, the budget, the strategic plan, etc. The chief development officer should also provide a briefing on the development plan and how fundraising works in your organization and should touch on the importance of board giving. But giving is an individual thing and they don’t want to be asked as a group. So, please don’t do it here.

    Should We Send a Letter from Our Board Chair?

    Another mistake.  It’s better than being asked in a group, or is it? Think about how you typically use direct mail—to acquire new donors, to reach out to those who typically give a small gift to your organization, to send news about your organization. None of these are what you’re trying to accomplish with your board giving. They are not new to your organization, they are not being asked for a low-level gift, and they receive the news through board meetings and other interaction with staff. So, why would you approach them through the mail?

     At the First Meeting of the Year?

    Okay, Linda, you always say we should ask them early, so this idea makes sense, doesn’t it? Sorry, wrong answer! The “Here’s your pledge card, fill it out” approach doesn’t work with major donors and it won’t work with the board.

    A colleague called me shortly after accepting a new development position. He sought advice about how to handle his organization’s approach to board giving. He had just come from his first board meeting in his new position, and he said the board chair started the meeting by saying that board members were expected to contribute to the organization, handed out pledge cards, and said, “Fill out your pledge card and hand it to me before you leave the meeting tonight.” Not exactly a well-planned, thoughtful approach to board giving!


    See part two of this blog coming up next week!  And don't miss Linda's 3-hour workshop "Building a 5 Star Board" at DSAIA 2019 in St. Louis!



  • Tue, November 20, 2018 2:00 PM | Anonymous member (Administrator)

    This article was expertly penned by Amy Van Bergen, who, among a slew of distinguished credentials and accolades, will be presenting at the 2019 DSAIA Leadership Conference, Feb. 28-Mar. 3, in St. Louis, on the topic of diversity on boards and in the workplace.

    1. The FRIEND who can keep his or her mouth shut

    This is that guy or gal whom you can reach out to day or night with a facebook message, text or email and they will immediately respond. You need to vent about what’s driving you crazy about your upcoming event? You need someone to talk you off the ledge? Your recent committee brainstorming sesh leave you feeling down or not sure what to try next? Want to just get someone else’s take on another group’s PR campaign? I promise you that you will meet your new best friend at DSAIA this year.

    2. The PROGRAM EXPERT you want to become when you grow up

    Has your board made a teen/adult transition program a top priority this year? Or maybe you are updating your prenatal or medical outreach efforts? Then you will attend at least one workshop on the topic, be armed with a detailed plan and resources to kickstart your new program and you will probably be struck with how you can add some secret sauce into ALL of your programs for some pizazz, consistency and efficiency.

    3. The DONOR who is going to make all the difference to your educational outreach or employment program in 2019

    Where else can you go to meet in person with Down syndrome-specific grantors like Global Down Syndrome Foundation, an organization that has granted about $500,000 to DS support organizations since 2012? DSAIA is the place to go to hear directly from both former recipients as well as the decision-makers.

    4. The NONPROFIT GURU who can help you wade through the gaps in your organization’s infrastructure (whether it’s board issues, budgeting questions, or impact-evaluation concerns)

    I am one of the first people to say that I am not crazy about auditing financials, creating a new development plan, digging into the bylaws or the other necessary pieces of nonprofit know-how…I’d much rather hold a brand-new baby with Down syndrome. But alas, if you want to keep reaching those new parents, we ALL need to better understand our policies and procedures and DSAIA is where you will find plenty of these experts who can help you and your organization.

  • Thu, July 26, 2018 7:30 AM | Anonymous member (Administrator)

    In our mission to help members of the Down syndrome community develop their organizational capacity, we’ve created four tips for fundraising and listed them below. Initiating your own fundraiser can impact how you serve Down syndrome associations in the United States and abroad. At DSAIA, we already represent over 1,000 leaders in the Down syndrome community spanning over 80 organizations--we’re providing tools to best support your community.


    1. Choose an Event Format or Theme: By hosting an event for your DSA, you can inspire both awareness and participation for the Down syndrome community. In order to encourage the most action at your event, get creative! Your fundraiser could range anywhere from a golf tournament to fashion show. A list of 100 fundraiser ideas can spark a bit of inspiration for your event.

    2. Establish a Budget: Managing a budget for your event isn’t easy! One of the best ways to tackle a strict budget is to start planning your event early. Giving yourself ample time to research potential costs will allow you to get the best deals from your vendors. In addition, make sure to document everything! Keep a running spreadsheet and ensure that even the smallest costs are counted toward your total budget.

    3. Find a Ticketing or Registration Platform: There are so many online event planning tools these days! Using an online platform is an easy way to create your event, sell tickets, spread the word and even track donations!

    4. Follow Up and Review: After your event, sit down and determine what went well and what can be improved for next time. Noting things that you can fix will make it that much easier to plan your next fundraiser. Sending an email survey to your attendees can be a useful way to generate feedback. Keep it short and sweet, and your attendees will be sure to respond!

    For more information on DSAIA events, head to our events calendar!

  • Fri, April 20, 2018 11:39 AM | Anonymous member (Administrator)

    Last fall, DSAIA talked to a handful of DSAs about their walks. We asked them the standard wrap up questions: what worked? what needs improvement? and compiled their responses. Four lessons stood out among all the answers, so we're sharing these insights with all DSAs in this blog post.

    1. Pitch a Tent: The last thing you want is to play victim to inclimate weather. Baltimore's Down syndrome group made the last minute decision to rent a giant tent for its outdoor walk in 2017 when forecasters called for showers. And it paid off. Chesapeake Down Syndrome raised a large tent in clustered several smaller tents at the walk start/end to cover vendor tables and walk activities. Not only did walkers find shelter from the wind and rain, the "unexpected result was a greater sense of intimacy for attendees, it invited more conversations with our resource organizations, parents could talk while watching their kids play because things were close."

    2. Be Mutually Generous: Your teams have spent a lot of time, energy and, of course, cash to support your walk and your organization's programming - reward them! DSA of Central Ohio upped the ante on team fundraising incentives - "that seems to be a big fundraising motivator." While DSA of Greater St. Louis offered day-of walk activities, including a rock climbing wall, crafts, carnival games, a petting zoo, trackless train, food, and music, to help celebrate their community's hard work. "We also have great success with offering the opportunity to throw out the first pitch and have field slots during a Cardinal game for our highest earning teams."

    3. Timing Is Everything: It may seem like you need to consult focus groups and community surveys to pinpoint the perfect time to launch walk registration, but according to our DSAs "the earlier the better" is the most scientific conclusion they've found. Wisconsin UpsideDown reported that starting earlier coupled with regular incentive offers "got teams fundraising earlier and they raised more this year."

    Timing matters the day of your walk too. Instead of waiting for everyone to line up to start the walk, DSA of Greater Charlotte stuck to the announced start time and opened the course while people were still lining up. "This cut down the time it takes to do the actual Walk route by 50% and avoided backups and bottlenecks along the route. Overall made a huge improvement in how smoothly the actual Walk part went."

    4. Consider the Impact of Change: Newton's third law says for every action, there is an equal and opposite reaction. I'm not a physicist, but as an agent for change you must consider and plan for the effects of making improvements to your event. In Charlotte, people enjoyed a smoother walk experience with an "on time" start. The effect was that walkers spent 50 percent less time on the course, and more time at the end-of-walk party. Now planners know that next year, walkers want an amped up celebration with added fun activities and experiences.

    More Walk Event Resources

  • Tue, April 17, 2018 10:50 AM | Anonymous member (Administrator)

    DSAIA is thrilled and deeply grateful to the House, Senate, and our President for passing the Omnibus budget! The budget includes $3 billion in new money for the NIH, including a big boost to Down syndrome research which has been underfunded for nearly 20 years. Please help us thank NIH and our bipartisan leaders!  

    The provision, supported by the Global Down Syndrome Foundation, directs the NIH Director to lead a groundbreaking new scientific initiative to study immune system dysregulation and trisomy 21, with the aim of yielding research discoveries to improve the health of individuals with Down syndrome and typical individuals at risk for Alzheimer’s disease, cancer, cardiovascular disease, and autism, among others.  

    Last year, the Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies, which provides federal funding for the NIH, held the first ever hearing on current and future research funding priorities for people with Down syndrome. The Subcommittee heard testimony from experts including Michelle Sie Whitten, President and CEO of Global Down Syndrome Foundation, Dr. Joaquín M. Espinosa, Executive Director of the Crnic Institute for Down Syndrome, and Frank Stephens, a Global Quincy Jones Award Recipient and Advocate.

    PLEASE HELP US THANK YOUR LEGISLATORS for making people with Down syndrome a priority! Your thank you will ensure that we continue to receive equitable funding today and in future years.

    Help us ensure funding today by writing a simple thank you!  It only takes 2 minutes

    Below are links to find the contact information for your congressional representatives and senators! It helps if you cc: or forward the letter to

    Representatives: Click here and put in your zip code to find your Representative. 

    Senators: Click here to look up your Senators by their names or your state. Click on the contact link that appears by their name in the search results.

    We are also encouraging all of the local Down syndrome organizations to help us spread the news of the Omnibus passing by sharing the information and attached graphic on their website, social media and newsletters. Thank you for all that your organization does to support families in your community, together we are making a difference!

    Global is thrilled to know that its decade-long campaign to educate our government and invest in science has helped lead to this new development. Global looks forward to being a resource and working with the NIH as this initiative takes shape. This represents an amazing milestone for federal research on Down syndrome and our members and advocates join us in thanking Congress for making this a reality.

  • Tue, February 13, 2018 4:21 PM | Anonymous member (Administrator)

    Article by Heather Sachs, Ricki Sabia & Lauren Camp, NDSC Policy & Advocacy Team

    “Be the change you wish to see in the world,” the quote most famously attributed to Ghandi, implores us all to use our voices to advocate for a better world for our loved ones with Down syndrome and other disabilities.  The National Down Syndrome Congress works diligently to improve the world for people with Down syndrome and other disabilities by fighting for equal rights and opportunities, defending against the erosion of civil and human rights, and protecting policies that benefit individuals with Down syndrome and their families no matter their socio-economic status.  Change takes time and many voices, and we can’t do it alone. But we recognize that advocacy can make people – and the people who run organization - nervous. Some of the most common questions we hear are: How do I become a better advocate for my child at IEP meetings and school settings? How do I advocate for policy change on a broader systemic level? How can my organization undertake advocacy activities without jeopardizing its nonprofit status? We invite you to attend our advocacy sessions at DSAIA for answers to these questions and many more.

    In Uniting Our Voices for Change: The Power of Grassroots Advocacy (10:15 AM - 11:30 AM, February 24 2018), NDSC Policy & Advocacy Director Heather Sachs and Policy & Advocacy Associate Lauren Camp will be discussing ways in which you can become a better advocate as an individual and as an affiliate leader.

    In Be Informed to Inform: Education Advocacy (3:45 PM - 5:00 PM, February 24 2018), NDSC Senior Education Policy Advisor Ricki Sabia and NDSC Policy & Advocacy Director Heather Sachs will delve into education-specific policy issues such as the Every Student Succeeds Act (ESSA), the Individuals with Disabilities Education Act (IDEA), Universal Design for Learning (UDL), and the Higher Education Act and post-secondary education.

    In these workshops, the NDSC policy team will break down grassroots advocacy techniques and education-specific policy issues into easily understandable language and give you the tools you need to bring policy-related information back to your members.  As affiliate leaders, we encourage you to take these steps toward becoming informed advocates and helping your membership to use their voices to “be the change” we all wish to see in the world.

  • Mon, February 12, 2018 11:10 AM | Anonymous member (Administrator)

    Article by Ricki Sabia, senior education policy adviser at NDSC

    Communication Rocks!!!!  Just ask Pia, an active self-advocate with the Positively Speaking workshop series!  Initially, Pia spoke in a whisper, looked at the floor and struggled with initiating conversations both socially and at work. Now, after being in the Positively Speaking workshop series, she makes direct eye contact, stands tall with open shoulders, speaks clearly and loudly and with communication confidence. Pia also demonstrates leadership skills and takes initiative at home and at work.  She has become experienced at public speaking (considered a phobia by many), delivering speeches at the Down Syndrome Network of Montgomery County (DSNMC)  Step Up Walk and on Capitol Hill!

    Do you want to help teens and adults with Down syndrome have a great social experience while learning to communicate with confidence at school, in the workplace, and in the community? If the answer is yes, you should attend the conference session called "DSAIA Award-winning Affiliate Teen and Adult Program: Use the Arts to Build Communication Skills!!" The DSNMC teamed up four years ago with ArtStream Inc., an organization dedicated to community inclusion and self-expression through the arts, to create a drama-based communication workshop for self-advocates ages 16-40 and their peers, as well as a concurrent event for parents. This session will provide information and demonstrations so that you can create your own workshops!

    A key ingredient is the use of drama-based games to warm up before the self-advocates work on the information they each want to share related to the topic for that workshop. Recruiting excellent peer mentors for support and an inclusive experience is another critical component.  While the teens and adults are busy with their peers, the parents are invited to attend a meeting where they share information with each other, as well as hear presentations on issues such as transition, independent living and employment. 

    This program has exceeded expectations! The self-advocates, who have a wide range of communication abilities, have become more confident and skilled at expressing themselves, including with Members of Congress! Families of teens and adults became active affiliate members again. Parents learned tips and information for navigating the world of adult services. Peers learned about the competencies of individuals with Down syndrome. Friendships blossomed. Self-advocates gave speeches at DSNMC fundraising events, which allowed family members of younger children with Down syndrome, professionals, and policymakers to learn about the dreams and accomplishments of the self-advocates.

    Adrian, another self -advocate, has become a sought after public speaker and board member.  He already had strong speaking skills but says that the workshops helped him improve. Steve, did not start out with as strong skills as Adrian. He struggled to answer questions and people had difficulty understanding him. Today his skills have improved to the point that he is confident at interviews and is able to provide prospective employers with the information they request.  Succeeding at the workshops does not require strong verbal skills. Will, who has very limited verbal intelligibility has increased his confidence, and improved his social skills with peers. He got up on stage and spoke at our Step Up Walk even though he only used a few words.

    So many stories to share!  We encourage you to create your own communication workshops and help self-advocates achieve communicative competence and confidence!

  • Mon, February 12, 2018 10:36 AM | Anonymous member (Administrator)

    Blog by Deanna Tharpe, DSAIA executive director

    Going to a conference is not easy or cheap.  At DSAIA, we certainly know that.  We send our staff to professional development opportunities like conferences and workshops just like we ask you to do. (We try to practice what we preach.) And we all know that going to a conference is more than just attending the sessions. How often are you going to get Down syndrome association leaders from 60 or more organizations all in one place at one time? (And we mean JUST leaders....)

    So, it's important to not only send attendees to the annual DSAIA Leadership Conference (#DSAIA2018) but also to get the most out of your attendance there. That's where my fellow executive director, Becky Caldwell, can help. She has 12 tips on how to make the most of your conference experience. For example, you probably thought about business cards before you go, but did you think about your website? What about reaching out beforehand using the DSAIA conference website to make meeting appointments with attendees PRIOR to the event?

    She has some great advice on how to operate during the sessions...and even at the after hours networking events. It's all about the personal connections but let's make sure we don't get too personal. And after the event, why not consider an accountability partner and starting on at least one action item? 

    We know you are intrigued to hear the details of her advice, so we're going to give you the link to her podcast on How To Conference. We think you'll find some great tidbits of advice in there!

  • Thu, January 18, 2018 2:00 PM | Anonymous member (Administrator)

    By Sandy Rees, GetFullyFunded

    Once someone gives, there are specific things they want from you before they’ll give again.

    And when you know what these are, it’s easy to give donors what they want.

    That makes fundraising much easier.

    Today’s donors are more savvy. They know good fundraising when they see it. And they’re steering clear of the bad stuff.

    They’re tired of being “hit up” for money.

    They want to see a good return on their investment in your organization.

    They want satisfaction from their giving experience.

    Nonprofits that will be crazy-successful this year will be looking for ways to inspire their donors and they’ll focus on creating loyalty.

    It just makes sense to cater to the source of your funding, doesn’t it?

    Here’s my short list of what donors want from the nonprofits they support. 

    • They want to know your nonprofit is trustworthy. Show your donor that you’re worthy of their trust. Do what you say you’ll do and prove that you can handle money wisely. Otherwise, you’ll never hear from the donor again.
    • They want clear, easily-understood requests. Donors are busy and they’re not willing to wade through long, vague appeals to figure out what you’re asking for. Get to the point quickly and don’t waste their time.
    • They want to make a difference.  Even if they can only give a small gift, they want to feel important and know that their gift matters.
    • They want to know the outcome. People are curious and they want to know what happened with their donation. Did the person or animal in your story get a happy ending? Don’t leave your donors hanging, wondering what happened.
    • They want to be appreciated. Donors like to be acknowledged, even when they insist they don’t. Show your appreciation and they’ll be very likely to give again. Not being thanked feels crappy and donors won’t tolerate it. They won’t tell you, they’ll just leave and you’ll be wondering what happened.
    •  Donors want to feel good about their experience. Donors want to know they made a good decision to give to you and that you’ll do great things with their money. No one wants to make a donation, then worry that their money won’t be used wisely.
    • They don’t want to be hounded about more money.  Donors who love your organization want to support you and see you be successful. But they don’t want you asking for more all the time. (Hint: if you do a good job of building trust and helping them feel good about their donation, they’ll be happy to give again.)

    Most of these donor needs are pretty easy to meet and you can do it through prompt response, good communication, and attention to the relationship.

    To win the donor’s heart and keep them giving, your job is to give them

    • Heart-warming stories. Tell the story with a lot of emotion and use photos and video whenever possible so the donor can feel it.
    • Clear explanation of the need. Learn to describe the need in simple language, without jargon, without acronyms, and without extra words.
    • Excellent customer service. When the donor calls or emails with a question, be prompt, friendly, and courteous in getting it answered for them. Your donors pay the bill for your organization’s operations. Treat them accordingly.
    • Sincere gratitude. Show your appreciation whenever possible. Be real and authentic and thank them warmly.

    Now is a good time to evaluate the things you’re doing to build trust and show your appreciation. Improve on the things you’re doing to give your donors a good experience and you’ll find fundraising gets easier.

    If you enjoyed this blog post, you'll definitely want to add one (or both) of Sandy's workshop sessions to your calendar for the DSAIA 2018 Leadership Conference in Denver February 22-25! Register for #DSAIA2018

    Sandy Rees is the Chief Encouragement Officer at Get Fully Funded! Checkout more of her incredible information at

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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


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