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  • Mon, January 25, 2016 9:56 AM | Anonymous member (Administrator)

    By Dana Lightman, Ph.D.

    You don’t need to hear from any expert to know that change is a constant element in our lives today. Leaders must navigate ongoing changes in their organizations, ranging from policy and personnel to technology and finances. And it is the leader who sets the stage for how these changes are received by staff and integrated into the organizational culture. To make matters even more stressful, the changes that are taking place are more complex today than they were in the past, and they are happening at an accelerated pace. In the past, when change occurred, it was more relaxed. You had time to adapt your feelings, thoughts and behaviors. You didn’t have to work at adjusting your perspective, because adjustments happened naturally. You didn’t have to spend so much time integrating new information and concepts. Integration seemed to just occur automatically.

    In today’s world of fast-paced change, you can’t afford to be passive. You need to be proactive, intentionally taking charge of your responses to change.  And helping others move from initial negative reactivity to more positive perspectives can create a smoother transition in the organization. For example, these types of thoughts about change would put anyone on a downward spiral of frustration, anger and resistance: “I don’t want to deal with this new policy.” “Not another new computer program I have to learn!” “Our old manager was so much better.” 

    The first step in being proactive is to notice and pay attention to thoughts that drain your energy and create anxiety or negativity.  The key is to shift your focus to the positive aspects of change.  Use these questions as a guide:

    • How will I grow from this change?
    • What negative pattern can I tackle and overcome?
    • What can I learn from this change?
    • What gains could I make that will help me down the road?


    The next time you face a change, coach yourself and others to notice the feelings of loss, uncertainty and discomfort that are the normal, initial reactions to change.  But don’t stop there.  Actively embrace this change as an opportunity for discovery, insight and mastery.  While change requires adjustment, when you take charge of your perspective, it can also lead to growth and empowerment.


    Dana Lightman is one of the many incredible presenters at the 2016 DSAIA Leadership Conference. Dana will be delivering the Saturday keynote address. Learn more about her at

    To see Dana and other speakers in person, go to


  • Tue, January 19, 2016 5:33 PM | Anonymous member (Administrator)

    By Norman Olshansky: President

    NFP Consulting Resources, Inc.

    I’ve often been asked, “what is the most important ingredient that makes for a successful nonprofit”?   I have a simple answer,  “everything starts with leadership”.

    Nonprofit organizations are typically created by an individual or group of founders who have a passion for a cause and who want to “make a difference”.   It is usually a long and bumpy road from initial concept to operational implementation and sustainability.  How well a new organization is able to navigate the normal stages of development depends on the quality of its leaders both volunteer and paid.

    Organizations go through stages just as individuals go through stages of growth and maturity.  The Founder of an organization is typically a passionate and driven person.  He/she has a strong commitment to an idea or vision for what they want to accomplish and they feel a responsibility and ownership for the development of the organization.  Without these driven and passionate “founders” most nonprofits would not be in existence today and able to provide important services and benefits in our communities.

    However, in order for an organization to be sustainable long term and to grow, it must adapt to the various stages of organization development and change.  What may seem like normal processes can be challenging for some organizations.  Some examples of change and challenge are:

    1. How an organization adapts from being all volunteer led to having staff.  
    2. When a new organization moves from operating out of someone’s home to a building or office space.  
    3. How existing leaders handle the loss or addition of volunteers or board members 
    4. The need to use/obtain technology and be able to communicate with large numbers of people
    5. Other factors such as fundraising needs, legal and compliance issues, competition, relocation, relationships with funders, or rapid growth/decline in the number of people seeking services, can all pose major challenges for organizations throughout their development. 

    The quality of volunteer and staff leadership determines how well these and other issues are handled. 

    True leaders share similar characteristics.  They are enthusiastic, positive, committed, lead by example, are driven and demonstrate a passion for the mission of their organization.  They engage and involve others. They are able to work with teams.   They are good listeners and consensus builders.  They are engaging and decisive.  A good leader is a reasoned risk taker and is constantly looking to the future.  Often neglected but very important, a good leader develops others to carry on their work and eventually transitions out of leadership in order to sustain the organization long term.

    Too often passion can interfere with good leadership.  I’ve never met anyone involved with nonprofits who had bad intentions.  However, the way some “leaders” handle issues and relationships can become problematic as a result of their strong feelings of what they think is best for the organization.  No one person “owns” a nonprofit.  By their very nature and legal status, nonprofits are the responsibility of a board of directors.  When a board relegates its authority to the “founder” or largest donor, or even to a staff person, problems eventually follow.   Each entity is important and has an essential role to play as leaders within a nonprofit.  However, leadership is not absolute.

    Often “Founders” have difficulty with transition.  After all…’s their baby and it’s hard to accept when a child is growing up and no longer wants or needs to be completely dependent on their parent.  However, good parents work hard to help their children become independent and at the same time maintain a strong relationship with each other.  Good leaders are able to make that transition.

    So what if you are lacking good leaders in your organization?  Does the culture of your organization encourage good leadership qualities?  Have you thought about what you can do (with others) to change the culture or your organization and help existing leaders to better appreciate, understand and implement their roles and responsibilities?   Do you have a good system of recruitment of leadership, orientation, training, mentoring, recognition, term limits, etc?    Do you have an active governance committee that reviews performance of leaders and makes recommendations on ways to improve leadership?  How effective is your succession planning?  Do you have good role models and examples of best leadership practices within your organization?  Is leadership development built-in as part of your overall strategic planning?

    There are ways to change organizational culture and develop quality leaders.  What are you doing to improve leadership within your organization?   In the end as in the beginning, ……it all starts with leadership.


    You can see Norman Olshansky in person at the 2016 DSAIA Leadership Conference in Charlotte, NC, March 3-6. Check out the full schedule here

    To read more of Norman's insights, visit his blog at:

  • Mon, January 04, 2016 3:48 PM | Anonymous member (Administrator)

    Title:  Count It All Joy: Life Lessons from a Child with Special Needs

    Author: Kathleen Murray, PhD 

    Reviewer: Lauren Camp

    Dr. Murray offers a raw, honest look into the past thirteen years with her son who has a dual diagnosis of Down syndrome and Autism. The book is divided into short and intriguing life lessons she has learned as her son, Christian, grew up. Murray describes the heartache she first experienced at Christian’s birth and how her original expectations of her son have exceeded her initial thoughts. Her remarkable description of the joy and lessons her son provides for her family portrays a true sense of her family and their love for each other and the growth they have experienced since his birth.

    The book provides an interesting perspective of having another child fourteen months after Christian was born with special needs. She accounts how the relationship between her son and his younger sister has been a strong and important component of her son’s development. Murray recounts how she overheard questions from others about having another child so shortly after her son, but she believes the outcome was remarkable for their family dynamic. Her daughter now has a profound sense of compassion and love for her brother. Murray states, “One of the best gifts ever given to Christian was his little sister.”

    Murray’s book is a quick and easy read for any new family experiencing a diagnosis ofKathy Murray Down syndrome, or a reflective and often funny account for a family of a child who has already experienced a similar situation themselves.  After reading this book, many people will be more open to embracing a child with special needs as the joy and lessons they will experience can be compared to no other.

    One of my favorite lessons from Murray’s memoir is from “Doors,” which states “Don’t close a door before you know what’s on the other side; it might be wonderful.” This lesson can be applied to so many aspects of life, but particularly when a family is shaken by a diagnosis of Down syndrome. Enjoy your new baby, learn what the future holds as it happens, don’t try and linger about or assume how the rest of your life will be with your new child, simply experience life as it comes.

    About the reviewer:  

    Lauren Camp is the Program Coordinator & Communication Director for the Down Syndrome Association of Delaware. Lauren first became involved with the Delaware organization in 2010 as a volunteer. In 2012, she started the Days of Summer Camp Program and continues to run it as a volunteer. She also works with the National Down Syndrome Congress as their Kids' Camp Director for the annual convention. In 2013, the DSA of Delaware presented Lauren with The Down Syndrome Advocacy Award for her outstanding volunteer efforts.

  • Tue, December 22, 2015 4:47 PM | Anonymous member (Administrator)

    I try to stay out of "discussion threads" because they lead to no good.  No good, I tell you! But sometimes I forget my rule and innocently make a comment. Oh boy...then I remember why I don't do that. The one thing that always hits me after being bombarded with implications that I don't set expectations high enough for my son with Down syndrome or I put limitations on him or I'm wrong to feel sad every once in a while when we don't hit a milestone or get to do other things that his peers are doing is this: we are not very accepting as a community. I'm being specific here because honestly, people, it kind of hurt my feelings. I mean, yes, it really did hurt my feelings.

    Which leads me to the real issue here: if we want acceptance of our children and adults with Down syndrome, then we have to start at home. No, not in YOUR OUR home. Yep, the Down syndrome community. Heck, the disability community. Once upon a time (some of you have heard this already), a parent at a disability advocacy conference in Austin commented on the fact that my son had Down syndrome, "Oh, that's the Cadillac of disabilities." Yes, they said that. I have witnesses. I wanted to tell them (ok, I thought of my comeback much later in the hotel room) that sometimes it felt like a Yugo, sometimes like an Edsel and sometimes like a semi. 

    But what I heard from other parents and even nonparents around the country was troubling. They stopped going to the local DSA events because they felt bad because their child was so high-functioning. Or that they stopped going to the local DSA events because their child was so low-functioning and they felt inadequate as parents. And some of them...they stopped going because their child had a different form of Down syndrome and they didn't feel welcome. Wait - I'm not done. Some stopped being involved because the "inclusion" topic always led to the fact that they were happy with the placement of their child in school and everyone harped on them for not fighting hard enough. And, some...some stopped going because their children weren't children anymore and they didn't feel included in all the "young" events that their group constantly focused upon.

    I was one of of the people that liked to speak up and tell people that inclusion was the ONLY way to go. Fight the system. Spend more time on after-schooling. And you know what...I was wrong to do that. I have realized that I did those parents and my community a disservice by preaching acceptance and inclusion from my soapbox but not practicing it when I stepped down. We have got to respect each other, people. We have got to get better about NOT having online conversations where we alienate members of our community. That parent or educator or medical professional that just had their involvement soured by that conversation or flippant remark might have gotten soured to the whole community. Who knows? They might have been poised to bring great change to our community as a whole in the years to come and we just ruined it.

    Less preaching, more listening. Less talking at people and more talking with people. More respect. More acceptance. More inclusion. And not just for our wonderful friends and loved ones with Down syndrome.

  • Thu, December 10, 2015 3:47 PM | Anonymous member (Administrator)

    Ok, that might have been a LITTLE over the top but sometimes it feels like DSAIA is just OUT THERE.....with NO NET. And honestly, I kind of like it. No, you won't find me on every stinking roller coaster ride at the amusement park. Nor will you find me zip-lining. (I was fooled into believing it was a one-time thing and then I found out that there were 10 zip lines and no way to get was not pretty.) But what you will find me doing is taking risks to find more effective ways to deliver programming and services to our membership. 

    Some (ok quite a few) involve technology. So if it works and you love it, that is great. But if it sometimes doesn't, please know that our goal was to make it better for our members. One of those risks is a new "info" avenue we are trying. We're utilizing Google Hangouts on Air and YouTube live streaming to bring you a broadcast each month regarding great information, involving guests and even a topic for discussion. This past month, we had our first broadcast with our guests being the Conference Cast. We talked all things conference including registration, mobile apps, speakers, events and even what's up with uptown Charlotte! 

    The recording is available - here's the link:

    And we hope to see you on the next one in December! Don't ask - we still got some scheduling to do, LOL!

  • Tue, November 24, 2015 5:41 PM | Anonymous member (Administrator)

    Guest Blogger: Julia Campbell of Julia Campbell Social Media

    Social media is not a fad, nor is it a trend – it is a way of life.

    Digital and social media tools have completely revolutionized the ways in which people communicate with each other, as well as the ways that we consume and share information.

    Love them or hate them, they are here to stay – and their influence on nonprofit marketing and fundraising is only growing.

    In MDG’s new infographic, they found that nonprofits have seen huge growth in their online presence, and an increase in their use of online fundraising tools such as social media and peer-to-peer campaigns.

    Key findings:

    **3 of the top 4 ways that nonprofits connect with donors and supporters are now digital – nonprofit websites, email campaigns, and social media channels.

    **Online giving, while still a small percentage of overall philanthropy and giving, is the fastest growing way that donors are supporting nonprofits.

    **81% of nonprofits still find Facebook incredibly important to their social strategy.

    **Peer-to-peer online fundraising is popular and a great way to raise money – 33% of all online donations are made through P2P campaigns.

    **Email isn’t dead – far from it! Nonprofits recoup $40 for every $1 spent on email (this means they are doing it right).

    Julia Campbell will be presenting at DSAIA's next webinar on Dec 8th - you can register here. You can read more of her blog here.


  • Fri, October 30, 2015 10:22 AM | Anonymous member (Administrator)

    Recently, one of our DSAIA members (Deborah Tomai, Board President of Rio Grande Valley Down Syndrome Association) was featured in a TEDx presentation. While an informative article can be found in our newsletter from Nov 2015, we'd like to share the complete interview that we were unable to due to space constraints in our newsletter.  

    DSAIA: Where/when was your TED Talk?

    Tomai: I spoke at TEDx McAllen in McAllen, TX on Tuesday, October 6, 2015.  TEDx events are independently organized in communities around the world, but they follow a strict blueprint set up by the main TED organization.

    DSAIA: How did you come to get the opportunity to do a TED Talk?

    Tomai: I love to listen to TED talks!  When I saw that there would be a TEDx event happening in my area, I followed their facebook page, thinking that I would try to get tickets.  When the organizers announced the theme for this year's event was "Breaking Borders", I was excited.  I sent the organizers an email to suggest that they include a message about disability.  Eventually, they asked for speaker nominations.  I asked a few people if I could nominate them, and I got a lukewarm response, so I summoned my courage and nominated myself.  I made it through the first cut and was asked to submit a short video.  I only had a few days to prepare, so that was intense.

    DSAIA: What was the main message you tried to convey to your audience?

    Tomai: I focused on three actions: welcome, respect and include individuals with Down syndrome (and other disabilities) in our community.

    DSAIA: Tell us about the experience…standing up on stage there, addressing the crowd, being part of a prestigious group…

    Tomai: I felt like a huge fraud!  My son Ben is only four years old, so I'm new at this.  I read a lot, and I've joined a ton of facebook groups, but I'm very much a learner.  Every idea that I shared comes from what I've heard and discussed with other people - the "Just Like You" video, conference speakers from DSAIA and NDSC, LOTS of blogs, and families in my community.  

    When my son was born, we didn't have a local Down syndrome association, so the RGVDSA was formed out of need - I wanted to know families in real life, and not just online.  I hoped that participating in TEDx would benefit RGVDSA - that we would connect with new families, and that we could build our profile locally with local educators, medical providers, funders, etc.  The talk was scheduled for the beginning of October, so I thought it would be perfect leading into Down syndrome awareness month.

    The practices for TEDx were fascinating.  We got to hear each other's ideas take form and change shape through regular speaker meetings.  The people who spoke are all doers and world-changers - two amazing Latina poets, one fellow who started his own school, a man from the colonias who now has his own fashion label in New York, a young civic activist, a Mariachi singer with a gorgeous voice, an award-winning educator, and more.  It's energizing and inspiring to talk to passionate people!

    I was nervous.  I was the next-to-last speaker, so I had to wait all day long before it was my turn to speak.  But the audience was wonderful.  I got to sit with several audience members during lunch, and each person resonated with a different speaker or illustration.

    My talk went well, I think.  We hadn't rehearsed in the same space, so there were a few things that surprised me with the slides and the clock, but it felt pretty comfortable overall.  I was worried about finishing on time, but I made it with 20 seconds to spare!  The audience responded generously with a standing ovation.  I wish I had taken more time to appreciate the moment, but I mostly felt relieved that it was over.

    DSAIA: Has anything come of the talk?

    Tomai: A neat personal moment: one of the other speakers confided in me that she has friends who have a son with Down syndrome, and she wasn't ever sure how to interact with him.  She made a point of telling me that she had invited their family over for a meal, and she gave the young man a tour and talked about her art with him.  She said that her perspective had changed, and she had made a deliberate effort to reach out to him.

    I also received an invitation to be a keynote speaker at a statewide event for physician's assistants in February.  I'll be speaking to around a thousand medical providers across the state - who care for individuals with Down syndrome at all stages of life.  I'm hoping to provide everyone with resources - including links and contact info for every DSA in Texas.    

    DSAIA: Should we look for it on video soon?

    Tomai: That's what I hear!  They've been editing all the video feeds, and it should be ready within a couple of weeks.  I'll let you know when I know for sure.

  • Thu, September 24, 2015 9:55 AM | Anonymous member (Administrator)

    Competition is fierce. It's not just nonprofits - it's actual Down syndrome-focused nonprofits. Yes, we have competition. And too often, I hear the phrase "We serve that population, we offer that service, we do that." But - do you? If a group of parents want to start another organization, then you have to ask yourself the REAL question: Are you serving the members with Down syndrome and their families in your community in the way that THEY think you should be?  And not just how YOU think they should be?

    Oh, there...there's the rub, right? Yes, we can't please every person all of the time. But we need to try. And sometimes it's the fact that we don't know what they want.  Who's fault is that?  It's ours. Because we have to ask.  And ask again.  And in different ways and in different formats.  And sometimes it's a long conversation where you DRAG it out of them... Hey, it's worth it in the end.  I promise.

    So, before you sit quietly lamenting about how hard you work to give your community what they need...maybe you should make sure what they NEED/WANT.  Because sometimes, what they need is not always what they want and vice versa. 

  • Wed, September 16, 2015 11:48 AM | Anonymous member (Administrator)

    Special Guest Blogger: Karen Bowersox of Downs Designs

    Do you know that are 3 million kids in schools today that have a disability?  There are children with Down syndrome, children, with autism and children with mental or physical disorders.  So many of these children do not have appropriate clothing to meet their needs or empower them with independence. 

    Most of these children are wearing sweatpants every day and clothing that doesn’t fit properly. Parents don’t want to send them to school in clothes that require help from caregivers, especially going to the bathroom.  It’s a constant worry for so many, so they sacrifice style many times for independence.

    Here’s an example of how poorly fitting clothes on a child with a disability impacts their life and their families’ life:

    •       ...They may be picked on or laughed at by other children who don’t understand why they dress in sweatpants or leggings every day.
    •       ...Other parents look at the children and think it’s their parent’s fault because they don’t dress them properly or think they don’t care enough about them to buy them nice clothes.
    •       ...Siblings often try to protect their loved one from bullies and may get into fights or in trouble with teachers while trying to defend their brother or sister.

    The fashion industry doesn’t seem to be paying attention to the needs of those with a disability and seem only focused on standard size clothing.  Recently there have been a few companies trying to bring more awareness to the forefront.  Runway of Dreams is making inroads in the industry for one and also my company, Downs Designs Dreams, has been getting more recognition for our efforts to change the clothing options for those with disabilities.

    Downs Designs Dreams has recently filed for a 501(c)3 and hopes through our new non-profit status, we can begin to bring even more awareness to the clothing struggles and challenges for those people with disabilities.  

    So here’s how we are reaching out to our youth in this country and trying to educate them on the clothing struggles faced by people with Down syndrome.  We have a program called Adopt-A-Jean and it’s an amazing way to educate people, and give people with disabilities a little solution to a major problem they may have.

    We want to extend our help to your group or organization and present an idea that we hope you find as important as we do. 

    Because of the poor clothing options for people with disabilities, they are often judged by how they dress rather than by the person they are. Children in schools can often be cruel and some adults even think their parents don’t care enough about them to dress them properly. 

    What we are trying to do is reach out to the young people today and educate them on why people with disabilities often don’t look like their peers.  At the same time, through our Adopt-A-Jean program, offer a solution. 

    Here's a scenario:  Someone in church has a son with Down syndrome and their son can’t do buttons or zippers and off-the-rack clothes just don’t fit, so they have no choice but to send him to school in sweatpants every day.  After they heard about the Adopt-A-Jean program, they proposed this idea to the church youth group.

    So the youth group decides they want to use this program as this year’s project.  They go to our website and download the Adopt-A-Jean – Start a Project pages.  Here they find the information about this project and what to do.  They can also call our office for help with their project.

    So first they need to set a goal.  They find out the price of our jeans and decide how many jeans they want to donate.  Then they decide who they want to donate them to.  Next they plan how to raise the funding. And lastly, when they complete their project, they give us the name, phone number and email of the recipients and we do the rest!

    What happens when this youth group does just one of these projects?  First they learn about the clothing struggles that people with Downs syndrome or other disabilities face every day.  (This is all explained on our website.)  They become more understanding, become less judgmental and gain acceptance.  Then when they tell others why they are raising money, they are also educating additional people about these daily challenges. This program not only offers a dressing solution but advocates disability awareness by eliminating possible outside negative perceptions.

    Now the best part of the program is there will be a few more children or adults in a pair of our jeans and our jeans have a powerful impact on their lives.  Our jeans give the wearer a new sense of confidence and independence and have a long-reaching effect.

    Our mission is to improve the clothing options for people with disabilities and to get more people involved to help spread the word, especially our youth.  We can’t think of a better way!

    If you have more questions, give our office a call at 877 390-4851 toll-free...we're here to help. 

    Karen Bowersox
    Executive Director
    Downs Designs Dreams

  • Tue, September 08, 2015 10:00 AM | Anonymous member (Administrator)

    By Robbin Lyons

    I don't know about you, but I spend a lot of time ordering stuff for my organization. I order promo items, flyers, brochures and golf balls, T-shirts, bags and office supplies. I love it and hate it.

    When I find a great buy and get a huge discount, I am doing the happy dance. When I get stuck with high shipping costs, I pout.  But since I have done it for so long, I wanted to share some tips. 

    Always shop the clearance tab on websites.  Always sign up for their e-news or discounts - just filter them so they drop into a promotions file.  Always check for the latest promotion and give yourself time.  If they are not offering what you need right now or if there is no deal for shipping- wait a week.  Chances are a new promo will be just the thing.

    When you shop- place items in your cart and then leave (make sure you have an established registration first).  Often you will get a follow-up email letting you know that you need to finish your purchase- and an added deal to encourage you to check out.

    My number one tip- Use that chat button! I almost always get a better deal than listed when I do this. Let the person that you are chatting with know that you are a nonprofit. Ask if they can get you a better discount or better deal on shipping. I rarely come away empty. I have even gotten high rush charges dropped.

    It also pays to stay with the same company if you can. Customer loyalty gives you more clout. Let's face it, we all struggle with the bottom line. We need to look professional and make orders, but we all need to be mindful of how much it costs. Hope these tips help!


    Robbin Lyons is the President of Wisconsin Upside Down and former board member (and conference chair extraordinaire) of Down Syndrome Affiliates in Action.

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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