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  • Mon, February 12, 2018 10:10 AM | Anonymous member

    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 9:36 AM | Anonymous member

    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 1:00 PM | Anonymous member

    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

  • Mon, November 20, 2017 9:14 AM | Anonymous member

    It’s ‘fundraising time’ in most Down syndrome associations. Of course, it’s also ‘budget time’ and ‘awareness time’ and ‘planning for the new year time’.  So, with all of that going on, why am I writing about customer service? Because it is ALWAYS ‘Customer Service Time’. And over the past year, I’ve been worried that some DSAs might not even be aware that precious communications and needs requests are not being addressed.

    Let me elaborate: DSAIA receives a call from a leader asking for contact information for a fellow DS support group. The conversation goes like this:

    Caller: “Hey, do you have another contact number or email for [Insert DSA name here]?

    DSAIA: “You mean, you think you have incorrect information from our directory?”

    Caller: “No, I’m going right off their website. I can’t get anyone to return my call or email and I have a family who's moving to that area. I wanted to get them introduced but now I’m starting to worry about the services they’ll get if I can’t even get someone to call me back.”

    DSAIA: “That is something to worry about, for sure. Let me see if I have any personal contact info for any of their leadership.”

    Yeah, I know. It is troubling. Now, this is not the only instance but just one that I’m recalling in enough detail to paraphrase the conversation. Which leads me back to a breakout session that Joe Meares and I presented quite a few times at the annual leadership conference and at NDSC’s LEAD pre-con. It was called Customer Service. For many, we just associate that term with for-profit businesses but you have to put it in the context that Joe and I did: it’s being responsive to your constituents (customers) and making sure that you are easily-accessible (phone/email/etc.) and that their needs are being met (resources at the ready, information available, access to programs).

    In response to this issue that keeps popping up within the community, I’ve decided to revisit that topic in an upcoming podcast. I hope you’ll join me as I discuss “customer service” in respect to operating as a Down syndrome association. And if you want to test your DSA's customer service, take this Customer Care Questionnaire and let us know how your organization measures up!

    Search STACKS for our customer services resources, including our archived presentation from NDSC.

  • Mon, November 06, 2017 11:52 AM | Anonymous member

    By Jay Wilkinson, Firespring CEO

    The Overhead Myth: The idea that you can reasonably evaluate a nonprofit’s performance and trustworthiness by only looking at how much they spend (or don't spend) on overhead, including operating costs, administrative expenses and technology costs.

    No doubt you’ve heard about this, and like many good nonprofit leaders, have done your best to refute it. It’s dubbed a myth for good reason.

    Yet most nonprofits feel pressured to do as much as possible with as little as possible when it comes to running their organization. The Overhead Myth still exists, and donors still scrutinize nonprofits, wondering what percentage of their gift actually goes toward the “cause.” As if dollars that support infrastructure don’t also support the mission.

    Today, with continually evolving technology and marketing channels, it's crucial to invest in your brand, digital presence, community engagement efforts and fundraising tools. Not just once, but regularly. We may not always want to spend money on overhead costs, but if we didn’t, we’d end up with archaic communication tools and a website that looks like 2005 (which is not okay if you want to appear current and relevant today).

    Why do nonprofits struggle with this? Because of the stigma of operating costs. Donors want to believe every dollar they give goes directly to the people who need it—straight to your mission. They forget that helping the cause doesn’t happen if you don’t have a healthy enough organization to deliver.

    How can you help your donors and dispel the overhead myth? Be transparent about questions like these:

    1.       What are typical administrative costs for most nonprofits? Anything necessary to keep the organization running. Without them, we’d have more money to give to our cause, yes. But we wouldn’t have an effective organization to support the cause. Administrative costs include staff salaries, IT setup and maintenance, training, leadership development, strategic planning, marketing, PR and the like.

    2.       Why has overhead been viewed so negatively in the nonprofit sector? Organizations are required to show on their Form 990 how they allocate administrative, fundraising and program expenses. Donors see that and ask, “How do my dollars actually help save shelter animals or feed the hungry?” They judge an organization by the percentage of administrative costs out of the total expenses the nonprofit has for the year, or the overhead ratio. “Overhead” has become a dirty word.

    3.       How should donors and nonprofits more appropriately view overhead costs? An example in a popular 2013 TED Talk about the Overhead Myth was this: You can run a bake sale and earn $75 with no overhead. Or you can spend $200 on a radio campaign, reach more people and bring in $500 while increasing your exposure and donor base. Why is it wrong to spend more if you end up better off?

    If you don’t pay for a good accountant, you won’t have adequate controls and the possibility of fraud is higher. If your IT system isn’t current, you’ll be limited by outdated technology and waste time doing things you could automate. If you don’t budget for new ways to raise awareness (SEO or SEM, anyone?), you’ll gain fewer new supporters.

    The truth is, the attitude of “do more with less” often doesn’t allow you to do much. Of course you want to make wise financial decisions and get the most value for your money. But many administrative costs are not expenses, per se—they’re investments. By allocating money toward the right things, you invest in your brand’s reach, influence, donor base and long-term planning.

    So, the “overhead truth” is this: Investing wisely in the right areas allows you to reach more people and create more impact, not waste more money.

    This is so important to consider as you plan your budget for the coming year and decide how to best allocate your funds. What will provide you with the best ROI and most effectively move the needle on fundraising? I would suggest starting with these five areas:

    1.       Your digital presence. Your website is your prime piece of online real estate. You probably have one, but how old is it? Does it look current? Are you able to update content? Is it mobile responsive, which is crucial now that people access the web more on their phones than their PCs? Does it cater to your community and allow them to do things like register for events and make online donations? This is important if you want to remain relevant in 2018 and beyond. Your website is not a “one and done” deal. It should be an evolving marketing tool—your most important one, in fact.

    2.       Community cultivation marketing efforts. Think email marketing, donor management, social media marketing, direct mail—anything that keeps you in touch with your constituents and fosters better communication and relationships. You can automate and personalize much of these efforts if you have the right tools, saving you precious time, and you’ll reap benefits for years by investing wisely in donor relationships.

    3.       Fundraising tools. The ability to take online donations is a must-have, but even beyond that, consider your donors’ giving experience: Do you take them to a third-party site in order to make a donation, or can they donate seamlessly right on your site where you have the opportunity to engage with them and draw them further into your organization’s story? Crowdfunding is another valuable fundraising tool your nonprofit may benefit from—have you researched platforms and how this form of fundraising could effectively move the needle? Investing in the right tools can both bring in more dollars and make giving easier for your supporters.

    4.       SEM/SEO efforts. SEO (search engine optimization) and SEM (search engine marketing) are often confused, but they’re slightly different. SEO is about driving traffic to your website organically through higher search rankings. SEM increases your website’s visibility through organic search engines results and advertising. SEM includes SEO as well as paid search. They both have this in common: They get your website noticed. You can have a brilliant website, but if you don’t invest in visibility and drive traffic to it, it’ll be brilliant alone.

    5.       Brand updates. This includes your logo, brand colors, website design, marketing materials—anything that conveys your nonprofit’s look and messaging. In order to stay relevant, it’s important to stay current, and that includes the way your brand looks and feels. Investing in your brand is a non-negotiable if you want potential donors to see you as an organization that’s worth supporting.

    This is not easy, and I want you to know that I feel your pain. Allocating your funds in a way that provides the best ROI can be a challenge, especially when you’re doing so under the watchful eye of your constituent base. At Firespring, we get you and we’re up for the challenge. We’ve been serving nonprofits for nearly 20 years, and we’ve learned how to help nonprofits make a bigger impact without blowing their budgets.

    The best news: As a member of DSAIA, you can benefit from Firespring’s services for even less through our preferred partner program. Investing in your organization’s capacity to raise money and engage supporters could be the wisest decision you make this year.

    About Jay Wilkinson

    Jay Wilkinson has been actively involved in the nonprofit community his entire life. He sits on the board of several nonprofits and is an avid supporter of programs that provide leadership and enrichment programs for America’s youth. As a philanthropist, Jay has raised millions of dollars for nonprofit organizations. As an educator, he has trained thousands of fundraisers, marketers and nonprofit executives and has appeared on CNN and other national news outlets discussing the important role nonprofits play in the U.S. economy.

    Jay is the founder and CEO of Firespring—a company that provides beautiful websites and essential tools to nonprofit organizations. Firespring helps nonprofits raise money, manage donors, organize volunteers and conduct events while presenting a powerful and professional online presence. Firespring is proud to be the first B-Corporation in Nebraska and is on a quest to transform the business landscape by encouraging all companies to leverage their people and profit as a force for good.

  • Mon, October 30, 2017 9:05 AM | Anonymous member

    Blog by Deanna Tharpe, Executive Director

    As the hashtag #metoo trends and more of my friends and colleagues are posting it as their status, I felt disheartened. I also took some time for reflection on my experiences in the workplace as well as in social settings. I hate to say it, but I actually looked up the definition of sexual harassment according to the U.S. Equal Employment Opportunity Commission

    I won't bore you with the policy language word-for-word but to summarize, it is unlawful to harass a person in a sexual nature of make gender-based offensive remarks. And harassment is ILLEGAL when the frequency creates a hostile workplace. 

    So, yes, I’ve had comments made that made me feel uncomfortable. I never felt like my job was in jeopardy. I’ve openly spoken about it to other employees and supervisors (if there was anyone above me in that situation). I realize now how that I might be in the minority. However, I have been the subject of sexual (or gender) discrimination. I was once told (outright) that I could not hold a top-level position in a company because (and he chuckled as he said it) “you’re a woman.” 

    Personally, I hope that all of this attention will empower women (AND MEN) to speak out about sexual harassment and that it’s not something we just “live with” because it happens all the time.

    Professionally, I’d like to take a moment to encourage your organization to adopt a harassment policy (if you don’t already have one in place). If you need an example, I think DSAIA’s is very robust and I’m happy to share it outside of S.T.A.C.K.S., our members’ only resource library. One more thing about adopting policies such as these: Make sure your employees, your incoming board members, and your volunteers all are aware of its existence. That doesn’t mean “here’s the list of policies” but rather that you mention these types of policies in particular (such as your Whistleblower Policy) and help them to understand that you back them up with action.

    To download the DSAIA Harassment Policy, click here.

  • Mon, September 25, 2017 9:12 AM | Anonymous member

    By Sandy Rees,

    “What do I do?”

    This question came a few days ago from a client.

    We’ve been working for months on a new virtual fundraiser for her global nonprofit, planning to hold the event September 30 (less than 3 weeks away).

    And in the past few days… a major hurricane-- on top of another major hurricane, brutal wildfires out west, an earthquake in Mexico, and thousands left homeless and hurting.

    It’s a good question.

    I know she’s not the only one with a fundraising activity coming up, so I thought I’d share my response with you, too.


    Fundraising options following a disaster

    If your nonprofit’s mission is to provide services after a disaster, this is your time to shine. Show lots of photos and videos of your team in action and ask for support. Remind people this recovery is going to take a while and you’ll need their support for months to come.

    All other nonprofits, proceed cautiously.  

    After a natural disaster like Hurricane Harvey or Irma, you have two choices: you can choose business as usual, or you can choose to pause your fundraising.

    It really depends on your situation and where you’re located.

    If you’re not in an area affected by the disaster, you might wait a few days to a couple of weeks after the disaster happens, then move ahead with your plans. The eyes of the world stay on the affected area for a while, and if you’re promoting your bowling night while people are being rescued from flooded homes, you’ll look insensitive. it’s a judgement call as to when to proceed with promoting your event, but I recommend waiting just a bit.

    If you are in an affected area, it might be best to wait or postpone your activities at least until the initial emergency is over. Even then, proceed cautiously. You still need to raise money for your nonprofit, but again, you don’t want to come across as insensitive. There’s a fine line between being selfish and staying true to your mission, and this is your time to figure it out.

    If your organization serves those affected by the disaster (after school programs, food pantries, legal aid, etc.), you have a valid reason to tie in the emergency and say “Those we serve will need us now more than ever following Hurricane Harvey…”.

    If your nonprofit doesn’t serve people with basic needs, you should be very careful about tying in the disaster to your fundraising. Don’t jump on the “me too” bandwagon. Better to be real and authentic than trying to stretch things too far because you’re trying to tie in the hurricanes. If you’re having to try that hard to ask for money, you have a bigger messaging problem!

    Here are some tips that might help you as you start raising money following a natural disaster.


    4 tips for raising money after a disaster


    1. Be sensitive. 

    It’s not a good idea to ask for money while the death toll is still rising. Understand that people are suffering and lives may still be at risk, and your donors may frown on an email from you promoting your upcoming event while they’re still feeling the initial shock from the devastation.


    2. Stay focused. 

    When you decide to move forward with your fundraising activities, don’t give part of your donations to the disaster victims (unless that’s your mission). It dilutes your brand and can confuse people. Trust me - they’ve got plenty of opportunities to support nonprofits doing boots-on-the-ground work. You don’t need to send money to support recovery efforts.


    3. Adjust as needed. 

    You may need to tweak your timeline just a bit to give folks a chance to emotionally recover from the disaster. Compassion fatigue is a real thing and people do start to numb out after days on end of hearing about the devastation. If you’re not sure how folks are feeling, ask. Survey some of your donors to find out what they think and how they feel. If 3 of your top donors think you should wait a little longer before you hold your big fundraiser, then you might want to seriously consider that.


    4. Know your audience. 

    This is the cornerstone piece of advice for nearly all of fundraising. Most people will donate in some capacity to support recovery efforts from a major disaster. We all feel the tug on the heartstrings when we see the video of the people slogging through the flooded streets with babies in their arms, having just lost everything. Knowing your donors and how likely they are to stay glued to the media in the wake of the disaster will help you judge the right time to resume your fundraising.


    Back to the original question my client asked: What do I do?

    Honestly, she was still finishing up the registration page on her website for the event, so we weren’t ready to go live yet anyway. She decided to wait a few days and is now slowly starting to let people know about the event and how they can get involved. It’s a fun, feel-good event, and I think people are ready for something like that in the wake of all the sadness, so I think she’ll be fine.

    Back to the original question my client asked: What do I do? 

    Honestly, she was still finishing up the registration page on her website for the event, so we weren’t ready to go live yet anyway. She decided to wait a few days and is now slowly starting to let people know about the event and how they can get involved. It’s a fun, feel-good event, and I think people are ready for something like that in the wake of all the sadness, so I think she’ll be fine. 

    Other Advice 

    I asked some of my colleagues what they are telling their clients. Here’s what a couple of them said: 

    Marc Pitman of 

    If you're not in an affected area: 
    (1) Stop if you feel you must - use the time to thank donors. 
    (2) Be confident in asking - and respectful. The devastation is real yet 
    your nonprofit's work is still needed. (I wouldn't tie it to "10% of your 
    money goes to hurricane relief" - that seems odd.)

    In 20 years of economic busts and natural disasters, the knee-jerk 
    reaction seems to be to under-value your own work and to stop 
    fundraising because it feels "selfish" or "wrong." But the reality is 
    the groups that get stronger out of recessions or disasters keep some 
    level of fundraising going throughout. 

    Carrie Rice of 

    While I know everyone's thoughts are on other things (hurricanes, 9/11) right now, the organization still needs support now and in the future. While 
    I hope donors will be generous in relation to what's happening in the 
    world, they also need to consider their own backyard. It's not either/or, 
    it's stretching a little more this year to help both a local community 
    benefit org and to try to help with these disasters. 

    I believe that is the crux of it all – the world isn’t asking your donors to stop giving to you and only give to disaster recovery efforts. It’s about giving just a bit more and support your work AND helping those recovering from the crisis.


    Reprinted with permission.

    Check out the latest and greatest from Sandy's GetFullyFunded blog:

    4 Ways to Spice Up Your Fall Fundraising Appeal

    5 Things You Should Never Write in a Thank-You Letter

    Fundraising Lessons From the Inspired Fundraising Retreat

  • Tue, September 12, 2017 9:00 AM | Anonymous member

    By Heather Sachs

    Chris Rodriguez and I are personally familiar with the challenges and expenses of having a family member with a significant disability, and the barriers to saving money in their name. When my daughter Leah (who has Down syndrome) was born 12 years ago, we were shocked when our attorney told us that we needed to write her out of our will and not put any funds in her name, as saving more than $2,000 in assets could disqualify her government benefits such as Medicaid and Supplemental Security Income (SSI). Chris has experienced the unfairness of these barriers to saving from a sibling perspective. His brother TJ has a significant intellectual disability, and he has watched his parents struggle all his life to meet his brother’s needs while carefully avoiding saving “too much” money in TJ’s name so that he could receive Medicaid and SSI, among other benefits.  Chris and I are both on a personal mission to address this unfairness in the government benefits system.


    Chris is the Executive Director of the ABLE National Resource Center (ANRC), and I am the ANRC’s Senior ABLE Advisor. We have worked together with the rest of the disability community for years to create an easy, affordable savings mechanism where people with disabilities and their families could actually save for the future without jeopardizing public benefits. In December 2014, these efforts were realized when the Stephen Beck, Jr. Achieving a Better Life Experience (ABLE) Act (PL 113-295) was passed at the federal level. Chris and I have worked tirelessly over the past few years to help over 48 states pass state versions of the ABLE Act and to provide support and guidance to over two dozen of these states to set up their own ABLE programs.


    Now that ABLE accounts are available nationwide and there are many options from which to choose, we are focusing on educating the public about ABLE accounts – what they are, who qualifies for one, what the funds in the account can be used for, and how to choose the ABLE program that is right for you. The ANRC’s recent nationwide ABLE awareness campaign, #ABLEtoSave, saturated the nation with information about ABLE, yet there is always more education to be done. 

    We invite you to join us for our webinar that DSAIA is co-hosting with the National Down Syndrome Congress entitled “ABLE Accounts: People with Down Syndrome are Finally ABLE to Save for the Future,” on Thursday September 17, 2017 at both 1:00pm ET and 8:00pm ET. The webinars will be identical, except that Heather Sachs will be featured on the 1:00pm one and Chris Rodriguez will be leading the 8:00pm one. Register for the one that best fits your schedule at

  • Thu, August 10, 2017 8:33 AM | Anonymous member

    Last month, I flew 2,500 miles from Baltimore to Sacramento, Calif., to attend my first NDSC Annual Convention... as an exhibitor, representing DSAIA. (Full disclosure: this was only my second convention, and I was so happy to be back.) Exhibiting at NDSC can prove challenging because the attendees - mostly family members and self-advocates - are not DSAIA's typical audience. Yes, there are DSA leaders in attendance, but they can be few and far between. So this year, instead of addressing just our leaders' niche, we took our message to the grassroots to show the abundance of amazing local Down syndrome support in nearly every corner of the country.

    NDSC attendees were drawn to our booth by a giant U.S. map generously dotted with the names of DSAIA's 80 member organizations. We encouraged passers-by to find their local DSA on the map, and mark their community with a pin as part of the #PinIt2WinIt challenge (obvious objective: most pins wins). At the end of the exhibition Saturday afternoon, nearly 300 people showed their love for their local DSAs. Cities and communities across the country colorfully erupted with pinheads representing the collective outpouring of support. Two DSAs, Down Syndrome Connection of the Bay Area and Silicon Valley Down Syndrome Network, emerged as the leaders of the #PinIt2WinIt challenge, and both organizations each received a comped registration to the DSAIA Leadership Conference in February. Congratulations!

    As more and more people visited our booth, I noticed a disturbing trend: the vast number of people who either didn't have a local support group nearby or didn't know their DSA. I didn't see any particular area most affected - the trend traveled more or less across the map. In many cases, we were able to introduce the families to the DSA that served their communities. It felt incredibly satisfying to guide a new parent to their home DSA, which also just happened to be a neighboring exhibitor - instant gratification! DSAIA is also proud to have on its website what we believe to be the most comprehensive listing of local DSAs around the U.S. Because we directly serve the local Down syndrome organizations and their leaders, we want to be known as THE place where people find and gain access to the DSA that serves them and their Down syndrome community.

    For some map pinners, a local Down syndrome support group was far from "local," showing the ever important and continuous need to foster leadership in communities with little or no local and direct support for Down syndrome. Our leaders have done an amazing job creating and growing local support groups that number in the 300s - it's an extraordinary feat evident by the hundreds of thousands currently served by Down syndrome affiliates. It's all the more reason we must continue our mission to increase the organizational capacities of all our DSAs - from the million dollar clubbers and seasoned associations to the nascent collectives and the passion of one. Because we all have the same mission for Down syndrome - and our vision is to make your mission come true.

  • Thu, July 13, 2017 6:00 AM | Anonymous member

    By: Deanna Tharpe, Executive Director, DSAIA

    I just moved back to Texas and guess what I did tonight!  

    I killed a snake.

    Ok, I ran over a snake with my car.

    Ok, I'm pretty sure I killed it.

    I mean, I think I killed it. It looked pretty dead in my rearview mirror.

    And what does that have to do with DSA leadership?  Just give me a few minutes. I promise, I do have the navigation on. Plus, I told Catherine McDonnell-Forney of DSA of Minnesota I could write a blog post on this topic.

    Think of the snake as that part of your job that is scary, repulsive, and maybe sometimes even can sneak up on you. You totally just run over that task with your "car" and leave it writhing on that Texas country road, hoping that it really is "dead" or completed to a point that it won't be bothering you again anytime soon. Hey, maybe it just slithered off and now it's someone else's problem.

    So, is it wrong to run over that snake and cross your fingers it is out of your life? No, we all face issues or job duties that we just have to address quickly and move on. But we can't go through our days in our organization doing this every time a task rears its ugly head...hissing at us.

    I know - you think I'm just talking to staff. Oh no! Board members are guilty of this as well. For every time a staff member doesn't update a database completely or hastily codes the bookkeeping entries for the accountant, there is a board member who only tried to make that thank you call one time or really only talked to that potential donor or board member once (and then drove off hoping that snake was dead).

    So, I ran over a snake. I think it's dead. But to be honest, I'm really not sure.

    But our duties as DSA leaders are NOT copperheads or rattlesnakes or water moccasins (Catherine stops me at this point and asks again why I moved back here). No, they are not. So no matter how badly we want to wipe our forehead and drive on to a more enjoyable activity, it's worth it to take the time to do it right.

    This is the craziest blog post I have ever written. I hope you are both appalled and impressed by it. 

I want to tell you what WONDERFUL time I had at the conference. I learned so much and came away with lots of ideas for our organization. -Barb Waddle, The Upside of Downs of Northeast Ohio


Down Syndrome Affiliates in Action started as a conference bringing together outstanding leadership from Down syndrome organizations around the country. Learn More

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Missoula, Montana   59802



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