Down Syndrome Affiliates in Action DS Group Therapy

4 Free Video Conferencing Options

Down Syndrome Affiliates in Action (DSAIA) — Tue, 15 May 2012 15:10:52 GMT

By Deanna Tharpe, DSAIA Executive Director

Your board is busy. They have work-related trips that keep them away from your board meeting. They are at the mercy of a sitter who cancels at the last minute or a child who came home sick from school that day. They live on the fringes of your service area and fuel costs are high, time expense is higher. So how do you make it easier for your board members to attend your meetings? Conference calls, of course! Oh, wait….don’t you hate conference calls where people talk over each other and you can’t SEE their body language or even tell if they’re paying attention? Video conferencing! Yes, that’s the ticket!

In the Six in Sixty webinar presented last week, we discussed some video conferencing options that are FREE. Yes, FREE. I thought this topic was one that needed to be shared for every Down syndrome group interested in bolstering board meeting attendance while still keeping costs down. Here are five options (again, all free) for your group to consider:

Skype. Good ol’ Skype. It’s reliable. Most people either already have it or can download it easily. It integrates with Facebook so yes, a lot of people already have it. It’s free for a one-on-one conversation. You have to pay if you want to more, though. For a day, $4.99. For a month, the premium service is $9.99 or cheaper if you pay annually. So, if you only have one board member that can’t make the meeting, it works well. The limit is 10 attendees but they recommend that you keep it to 5 for quality.
ooVoo. I really like ooVoo. It’s free for up to 12 people and the free service still has call recording. The premium service comes with no ads, screen sharing and support and is $4.99 per month. ooVoo also has Video Chat Rooms, which is cool if you want to offer that on your website to talk to parents or professionals at any time without setting up a webinar or downloading software.
Google+ Hangouts. Up to 9 people can video chat on a Google+ Hangout. And it is free. However, everyone has to be in Google+ for this to work. I like that the person talking comes up on the top of the screen in a bigger frame while the others stay lined up at the bottom of the screen. (Ok, that’s just me liking the coolness of it.)
Faceflow. Faceflow allows up to 4 people to video chat at no charge. What is different about Faceflow is that it is web-based, so there’s no download or installation required. There is no premium option for Faceflow and you can share video.

Here’s a couple of other options for you that will COST you some dough which I would be negligent not to mention:

Gotomeeting HD Faces. Yes, Citrix will allow you to video chat now using their meeting software. You can purchase Gotomeeting or Gotowebinar inexpensively at Techsoup, but it’s not something I would purchase unless I was planning on hosting webinars since there are a lot of other free options.
BigMarker. I love BigMarker…because their “virtual conference rooms” have a whiteboard option and video chat features. However, unless you want to pay $19.95/month, your “community” is not private. Not a good option for board meetings but a great option for a presentation or speaker function that you want to share with your group that might be far away (think outlying areas).

So, there you go. One more thing before I leave you to do your research (which I totally expect you to do on your own rather than take MY opinions as your own)… And I’m almost ashamed to say this to you…but…remember that you have to have a webcam to use these services. (I know…see I’m embarrassed.) But, you can get one at Wal-Mart for less than $30. I’d love to hear about other resources I’ve missed here and how you use these type of services in your organization. Good luck with your video conferencing!

Only the Very Best for Your Membership!

Down Syndrome Affiliates in Action (DSAIA) — Wed, 02 May 2012 19:16:39 GMT

By Deanna Tharpe, DSAIA Executive Director

Reading over an article from Jane Page-Steiner, I saw something that really caught my eye. She spoke of board researcher, Mary Hiland, Ph.D of Hiland Associates, and a study she had done on the life cycle of boards and board development. Study participants identified three critical factors that influenced or drove board development and change and what was the first one on the list? Outside governance expertise or training– a “nudge” during a facilitated board training or a board member attendance at an outside training contributed to a new vision of the board.

Can I say something to you in confidence? Have you ever talked to your spouse about an idea and have them shoot it down…but then later when a total stranger touts the same idea they are more than happy to jump in with both feet? Shhh…that is why outside training is so important. And it is important to your board to hear certain things from an outside source, a professional, rather than from a peer.

This month, we’re talking about Shared Responsibility and Accountability. Wow, wouldn’t you like to have your entire board on that webinar? Well, make it happen, Cap’n. (OMG – I did just say that!) Encourage your board to attend the upcoming DSAIA Board Development Series webinar on May 15^th. When they register, they’ll get an email with a link to view past webinars. It’s important. It’s your board. It’s your organization! (Psst…what your board does directly affects your membership…individuals with Down syndrome.) Don’t your members deserve the very best? Give it to them. Enroll your entire board in the DSAIA Board Development Series at www.dsaia.org/webinars today!

And don’t forget…DSAIA members have only until June 30^th to take advantage of Jane Page-Steiner’s valuable one-hour consultation FREE OF CHARGE through our VIP Offer. Check it out at www.dsaia.org/vip.

Let’s Talk…

Down Syndrome Affiliates in Action (DSAIA) — Tue, 24 Apr 2012 16:14:50 GMT

By Deanna Tharpe, Executive Director

The first Town Hall Meeting held by Down Syndrome Affiliates in Action was an amazing experience for me. Everyone there sharing their thoughts and giving the organization its direction in its first year was simply fantastic. Let’s do it every year! However, at the conference in 2011 the topics were mostly conference-related or were just kudos. Yes, thanks, we DO like to hear what we’re doing well. However, in a limited-time situation, we really need to hear what you’d like us to do or do better. It was great to get that kind of feedback in DC at the meeting.

Ah…but what about the people who are not able to attend the conference? When do they get their forum? And why should we have to wait a year to hear from members in that type of setting? Good questions. The answer is coming your way in the form of quarterly meetings and the first one is Thursday, April 26^th. Personally, I can’t wait. I hope that we have at least one member from every group on the call. I hope that they all come with ideas that will improve our service to our members. I also hope that they come ready to share their needs with us. And I hope that they come ready to interact with each other as well.

We’re trying new technology for this meeting which will allow you to “raise” your hand using your keypad on your phone so that no one is talking over another person. (Let me tell you, that was a huge concern.) It will be the first time for us to use this technology, but we hope that it will make for a more productive meeting for all.

So, circle the date. Thursday, April 26^th. We’ll start promptly at 7 pm EASTERN. Talk to other members of your leadership about attending. We understand that life is busy, but we’re sure that at least one member of your organization is available for an hour on Thursday night. Am I right?

And what about the groups who are not members of DSAIA? As much as we would love to allow you a vehicle to share with other groups across the nation…membership does have its privileges. Our members deserve a time to talk about themselves, ask us questions and give us feedback. This is it. We hope you use it well and come back for more!

To register, go to http://dsaia.org today!

How Old Are You?

Down Syndrome Affiliates in Action (DSAIA) — Tue, 10 Apr 2012 18:57:44 GMT

By Deanna Tharpe, DSAIA Executive Director

On Sunday, we made a stop at the local fast-food taco drive-thru to pick up a Paw-Bender. It’s a cup of frozen yogurt with a couple of dog bones covered in a creamy layer of peanut butter. It was a birthday treat for the oldest member of our family, our 63-year-old (ok, she’s only 9) black Labrador Retriever Slingshot. Slingshot is a great duck dog (I hope so after $6K in training) but more than that I love that she still acts like a puppy even at her “advanced” age. I tell you all of this because as I sat watching her eat her treat on Sunday, I was amazed at how youthful her “outlook” was. And it made me think about all the groups who are 20+ years old who are doing great NEW programs and initiatives.

So, I think it’s high time that we have a little celebration for all those groups out there that have been providing great support and programs to parents and professionals for twenty or thirty years. Thank you for your hard work and for taking it past one parent’s passion for their child and making it into something so much bigger.

And for the groups who have been steadily making strides in their community (and beyond) for ten or so years…thank you. These are the organizations stepping up to shoulder that load of responsibility that our older (or should I say more experienced) groups have been carrying for us for so long. It’s so nice to see their efforts as they share them with all of us.

No, I didn’t forget the pups….the groups that have been here only for a few years or are just getting their feet underneath them. Those are the most exciting because they bring such vitality and a thirst for learning to the table. I have to say that the phone calls from these groups make my job an incredible experience. Why? I’ve been there. The questions they ask are the ones I asked just a few short years ago.

So, as I sat and watched Slingshot jump around waiting for her Pawbender, I thought to myself that I only hope that I have that much energy at 63. But I know that she tires easily. Her energy is short and sporadic. However, when she is on a duck hunt with her best friend (my hubby) she is at her best. Her passion wins out and she gives it her all. That is why Down syndrome organizations grow and look for ways to better serve their members….because the passion wins out every time. So, embrace your passion! Be proud of your accomplishments! Never act your age…always look for that youthful vigor and utilize your passion for your mission. And like Slingshot, you will become a trusted and loved (and invaluable) part of your family (or community) who is still out there on chilly mornings with a passion for bringing in the ducks.

World Down Syndrome Day - United Nations Style

Down Syndrome Affiliates in Action (DSAIA) — Tue, 20 Mar 2012 17:18:19 GMT

By Deanna Tharpe, DSAIA Executive Director

World Down Syndrome Day was established by Down Syndrome International in 2006 and is observed in more than 60 countries worldwide. It is held on 21 March (3/21) to signify the trisomy of chromosome 21 unique to Down syndrome. 3-21 aims to raise awareness and understanding about Down syndrome by promoting the inherent rights of persons with Down syndrome to enjoy full and dignified lives and be active and valuable participants in their communities and society.

March 21, 2012 demonstrates important international progress by the support of the United Nations for people with Down syndrome. For the first time ever in 2012 the UN will officially observe World Down Syndrome Day and all 192 UN countries will recognize 3-21 in a joint partnership to raise awareness, acceptance, and inclusion for individuals with Down syndrome.

Down Syndrome Affiliates in Action couldn’t be more proud of our board member, David Egan, as he will be speaking at the UN tomorrow. He is in good company. Also speaking will be Jason Kingsley, co-author of the book Count Us In: Growing Up With Down Syndrome; Emily Perl Kingsley, mother, writer, activist, author of “Welcome to Holland”; Michelle Sie Whitten, Executive Director of Global Down Syndrome Foundation; Dr. Jose Florez, NDSC Board Member and NDSS Clinical Advisory Board Member; Dr. Brian Chicoine, Medical Director at Adult Down Syndrome Center; Dr. Dennis McGuire, Director of Psychosocial Services at Adult Down Syndrome Center; Krista Flint of Inclusive Humanity; Dr. Edward McCabe, Executive Director of Linda Crnic Institute for Down Syndrome; and Margie Doyle, Development Coordinator of Down Syndrome Research and Treatment Foundation.

If you’ve never heard David speak, it’s quite a treat. I was able to step in and listen to a portion of his presentation at the 2012 DSAIA Conference. He’s a natural – with total command of the room. He’s passionate about advocating for self-advocates and it comes through. In the last six months, David has been working with other DSAIA board members and self-advocates to create the Advocates Leaders in Action ALLIANCE. This committee’s goal is to promote leadership positions for self-advocates, to support organizations and board members in discovering the value of having adults with Down syndrome serving on the board and/or in leadership positions, and to gather lessons learned and best practices in a successful inclusion process.

And, tomorrow, David Egan will speak at the United Nations along with other professionals and self-advocates from around the globe to show the rest of the world what is not just a possibility but a reality…right now. Wow. Way to go, David.

Follow-Through

Down Syndrome Affiliates in Action (DSAIA) — Tue, 13 Mar 2012 16:03:01 GMT

By Mark W. Leach, Esq.

Each year, those who attend the DSAIA conference myself included, experience emotions on opposite ends of the spectrum beginning with "E": going from "energized" to "exhausted." It's understandable--late nights, early mornings, and days packed full of discussion and information can both energize and exhaust. But we all know that success lies in not simply receiving the info at the conference, but in following through when we return home. Next week provides one of the easiest steps for follow through.

Next Tuesday, March 20, 2012, the Informed Decision Making Task Force (IDM TF) will be holding its regularly-scheduled conference call. The call is at 12:30 pm Eastern and we'll be discussing attendees' experience at the conference, their plans for World Down Syndrome Day, and the plan of action to deal with advances in prenatal testing and proposed public policy.

I hope you enjoyed the prenatal testing/medical outreach track at this year's conference. If you left these sessions wanting to do more--as many, many people shared with me was their intention--one of the first steps is participating in the IDM TF. To participate, just e-mail me at mleach@stites.com and you'll be added to the call-in list.

I hope you'll join us. It's always fun, insightful, and, particularly for new members, they leave knowing more about what is happening around our country to engage in medical outreach and provide accurate information and support to our current and future members. Also, feel free to friend me on Facebook to see both commentary on the recent reports on the lawsuit in Oregon and a new letter by Dr. Skotko and myself published in a medical journal this week.

I look forward to hearing you on next week's call and thank you for following through on your commitments and intentions from the DSAIA conference!

Thanks to guest blogger (DS of Louisville President and DSAIA Board Member) Mark Leach!

Turn Out the Lights....The Party's Over

Down Syndrome Affiliates in Action (DSAIA) — Tue, 06 Mar 2012 17:23:37 GMT

By Deanna Tharpe, DSAIA Executive Director

Rather than bore you with how much I enjoyed seeing everyone this past week at DSAIA 2012 or how tired my feet are, I thought I would give a voice to our attendees. See what others thought of our event:

[Regarding Dr. Bev Browning’s sessions] “I just want to say THANK YOU!! She was amazing and I now have confidence to search for and fill out some grant applications! She is a wonderful woman, great presenter and just really made things seem possible. (not easy…but possible)”

“It was such a great feeling to know that my Board member (who paid for herself) was going to have a great time and that it would be worth her time and money. And it was! She loved it. All the members of the committee were warm and helpful and communicated how much every member was valued and an important part of a larger community.”

“I hope you all enjoyed and benefitted from the DSAIA Conference as much as I did. I was honored to be asked to speak. The opportunity to be a part of such a committed and caring group of folks pleased me enormously in advance. The folks I met at the conference itself continued my wholly positive impression. It was great to be a part of such a committed group of folks with a single mission – to help create a better life for those with Down syndrome.”

“Having arrived home safe and sound, I just wanted to take this opportunity to say ‘Thank you’ for a fantastic conference. I do believe it was, as I heard many people say, the best EVER!”

“I just wanted to say that, while I have been to many great DSAIA conferences, this year was somehow tangibly different: crisper, smoother, even more professional, and, yes, even more fun!”

I Read This and Thought of You

Down Syndrome Affiliates in Action (DSAIA) — Tue, 21 Feb 2012 19:16:27 GMT

By Deanna Tharpe, DSAIA Executive Director

I put down my Android Karenina book last night (yes, same series as Pride and Prejudice and Zombies) to read a leadership book I had downloaded from the local library. (By the way, I just want to thank my hubby for my tablet because I think I’ve read more in the last 6 months than in the past 6 years.) The author spoke of getting out of your comfort zone and how even when we do, sometimes we don’t really go anywhere or do anything because we tend to rely on our same old crutches. That made me think of our conference attendees.

I’m ecstatic that we have over 225 attendees registered for the conference. I truly hope that they learn a ton of stuff and go back home trying to process it all. But more than that…I hope that they get outside of their comfort zone a little and drop the crutches. I’ve heard groups tell me “we’re just too small to do that type of program” and don’t attend the session. Or what about the group that says “we just don’t have enough money to do all the things we want to do”. FYI: No one EVER has enough money to do all the things they want to do. But to you small groups out there…throw away that “small group” mentality crutch and look around. Small groups CAN do big things. And for those groups who don’t have enough money…make a real investment in your organization’s future by attending one of the DOZEN fundraising-focused sessions at this year’s conference. And then…follow through when you get back home.

And if you are not sure about a session, then ask the presenter some questions! You can do that in advance this year by getting involved in our online community and messaging speakers. One attendee told me she was able to find out more about a session (whether it was above or below her knowledge level) just by asking the speaker. It helped her continue to pick her sessions and not schedule one where she already knew everything. Hallelujah!

Yes, getting out of your comfort zone is difficult and when you do those crutches feel like old friends. But crutches don’t let you run with the pack or even come out in the lead. You are attending the conference because you are a leader. And when you realize that, you are already halfway there. See you in DC!

Count Me In!

Down Syndrome Affiliates in Action (DSAIA) — Thu, 16 Feb 2012 22:59:18 GMT

By Deanna Tharpe, DSAIA Executive Director

We preach inclusion and equal treatment in the Down syndrome community, but time and time again I meet groups with nothing but parents on their boards and nothing but parents organizing events and fundraisers. A board member came to me one time long ago and told me that they were leaving the board because they felt ostracized at every meeting. They explained that as a business owner, they felt that their talents and experiences would benefit the organization. However, at each meeting their comments were regarded with disdain and they felt it was because they did not have a child with Down syndrome. Whether this was actually the case or not, we all know that perception is reality. How sad that this wonderful resource took their toys and went home because they felt that we were not accepting of those different than us.

That is why I’m so excited that we have a session devoted to that topic at the upcoming DSAIA Leadership Conference. Janet Gora, Executive Director of the DSA of Greater Cincinnati, is leading a group of panelists in “Count Me In: How People Without a Connection To Down Syndrome Want To And Can Benefit Your Organization” twice during the event. You’ll hear from the panel about how they involve people without blood ties to people with DS in their organization. Then you can join in a discussion about the benefits and barriers and finally learn how to recruit, train and support those without children with Down syndrome in a variety of ways in your organization. I’m so pleased that Janet is giving attendees this opportunity because it couldn’t be needed more.

Now, you may think that my example is unique. I assure you it is not. Let me share some experiences of others from the upcoming breakout session:

When it came up that I was not a parent of a child with Down syndrome, the mom said, “I’m so sorry.” It made me feel like an outsider and kind of strange.
When I attend an event and someone asks if I have a child with Ds, and I say, "no," sometimes that ends the conversation.
To be honest- I always felt like there is a sense of why are you here? It would go a long ways to be more accepting and encouraging of those that serve on the Board without blood ties.

If you read this and take away only one thing, let it be this: What is your group (and membership) missing out on by not taking advantage of individuals who WANT to serve? It’s worth your time to attend one of these sessions.

To view the complete schedule, go to http://dsaia.pathable.comand click on “Schedule.”

Jetsetter

Down Syndrome Affiliates in Action (DSAIA) — Tue, 14 Feb 2012 15:51:20 GMT

By Deanna Tharpe, DSAIA Executive Director

Over the last few weeks, I have had the opportunity to spend some quality time with Down syndrome groups across the country. A couple of weeks ago, I was in Georgia. I spent some time in Tennessee and even made a little time in Texas last week. Yesterday, I was on the East Coast visiting with a member. Today, Joe Meares (DSAIA Board President) and I are visiting with a group in Indiana. I’m going to New York on Thursday. No, I haven’t been jet-setting. Actually, I’ve been using webinar technology to talk to groups about DSAIA’s resources and how to access them.

For current affiliates, I’m doing “refresher” courses for board and staff. For groups considering membership, I’m giving them an up-close and personal tour of the website and answering questions/concerns. And it’s made me realize how important it is for us to offer this type of opportunity to our current members. Many of our groups only have one or two people with access to DSAIA resources. Why is that, I wondered? I always encourage our members to add their entire board and any committee chairs to the system. But then, some groups have everyone in the system and only a few are accessing it. Then an affiliate leader asked if they could give their log-in to another person in their group….what? Yes! Well, NO! They should have their own access! And better yet, let me show you how to take control of your membership, revise your list yourself, give everyone in your leadership individual access, and make the most of your investment. (But I digress….)

Although I would love to hop a plane and visit with groups in person, I think we have found a way to have those personal discussions without the airfare cost. And that is why I’d like to come visit your group ‘virtually’. We can even video chat! Beginning in March, I’m scheduling a monthly “visit” for those members who would like a tour of the “facility” or would just like to get to know DSAIA or me better. It’ll be limited to fifteen attendees each session, a group small enough to allow open conversation and even – yes – video chat! It’ll be at the same day and time each month. Think of your new walk chair or staff member…just have them attend the monthly “tour” and they’ll be up to speed on DSAIA resources and ready to go! And if your entire board needs a “tour”, then I can schedule a meeting just for your group at a day/time convenient for all of you. Look for more details on the first session in our March newsletter. In the meantime, I’m getting ready (and very excited) to see lots of you in person at the conference in two weeks. See you in DC – and online – very soon!

It's My Favorite Time of the Month: Committee Week!

Down Syndrome Affiliates in Action (DSAIA) — Tue, 07 Feb 2012 16:35:59 GMT

By Deanna Tharpe, DSAIA Executive Director

This is my “committee week.” Or at least, that is what I call it. As an ED I really only chair one committee; however I try to attend all committee meetings when I can. And it just so happens that normally all of the DSAIA committees meet during the second week of the month. So I’ve affectionately named it so.

To be honest, I have not always been a fan of committees. Sometimes, committees can be utterly fantastic. They develop a good plan, they recruit productive members, and they execute their plan with amazing results. And then….there are the other kind. We’ve all been on THOSE committees. They are the ones where the ED or Board President finally steps in and says “Never mind – I’ll do it.” The neat thing about DSAIA committees – they’re all made up of leaders! It’s awesome! So, I can see where some of our members might have lost faith in the role committees play in their organization.

I read this great article today (compliments of Wild Apricot) from Patricia Hudson of the Melos Institute, where she suggests that it’s not the structure that’s lacking, but the need for “establishing some basic principles and practices for committee effectiveness.” So, the 'too busy to prepare for meetings', 'too busy to pay attention at meetings', and 'too busy to follow-up afterwards' excuses that would otherwise make us think that committees are a waste of time may not be valid notions at all.

Hudson says the key is to understand a few basic principles:

competent committee management and productive meeting management (yes, they are different).
a recognition that associations are a talent pool; that everyone involved in the process has a desire and the potential to succeed but often lacks the skills or experience necessary to do so.
attitudes and an organizational culture that believes in empowering those involved to become adept in their role.

Good meeting management can dispel your belief that members are no longer interested in being a part of a committee. Hudson says that their frequent complaint is that “meetings too often deal with superficial issues, lacking any real opportunity to make a difference.”

So, if you are not creating opportunities for members to become actively engaged (through committees), then you are losing out on the power to tap into that vast talent pool full of connections into a professional network that could benefit your organization.

You can read the entire Melos Institute article (PDF) here.

Do you have good, action-oriented, productive committees in your organization? Are you looking for more help to perform effective committee management? Comment! We want to hear from you. And if you are interested in being involved in one of those terrific DSAIA committees, contact me! (I've got connections and I can set you up...)

(Special thanks to Wild Apricot for their wonderful blog posts who never fails to point us in the right direction!)

Just A Kid In A Candy Store

Down Syndrome Affiliates in Action (DSAIA) — Tue, 31 Jan 2012 17:16:14 GMT

By Robbin Lyons, DSAIA Board Member & Conference Chair

When I was a child, my grandfather lived across the street from a candy store, the kind that sold penny candy and sodas. We lived far away and only visited once a year, but each time we did, my grandfather would take me by the hand and walk me to the candy shop. There he’d hand me an empty display box and walk me down the isle of the penny candies. As we walked, he’d let me grab a little of each kind of candy and fill my box to overflowing! There were some kinds I’d grab a huge handful of, some I’d just take one or two, yet others, I’d skip all together. In the end, I had a box of treats that was my own little collection just perfect for me.

Thinking about the conference this year reminds me of those days. You can still choose to pick and choose from a variety of topics in search of something new to bring to your group. Or if you want a little more, say you have been to some basic training at a conference in the past or attended a beginning level webinar and want to learn a little more, you can dig deeper as we offer both 101 and 202 level training sessions. Or grab that whole handful as you immerse yourself in one subject by following one of our education tracks on a variety of subjects, like Prenatal Diagnosis & Medical Outreach, Board Development, Finance, Self Advocacy or you can still choose to pick and choose from a variety of topics in search of something new to bring to your group. Sweetest of all we have brought in experts in Non-Profit Management and Development from outside the Down syndrome community, so you can get a fresh take on ideas for running your organization. In the end you get to go home with a box of goodies that’s just right for you!

Registration is still available and includes both DSAIA Conference & Buddy Walk on Washington events - but only for a limited time! Register today at: www.dsaia.org/attendees

Corporate Grantseeking 101

Down Syndrome Affiliates in Action (DSAIA) — Tue, 24 Jan 2012 16:40:44 GMT

By Dr. Bev Browning, Vice-President of eCivis and bestselling author of Grantwriting for Dummies

Did you know that major corporations have created community reinvestment or social responsibility programs for grantmaking purposes? These corporate grantmakers are mandated to allocate at least 5 percent of their annual profits toward their corporate foundations. For big-name corporations, this can be a hefty amount. How does this help your organization or agency? It means that you can expand your realm of potential funders to meet some of those smaller line item needs.

Who Are the Top Corporate Grantmakers?

Each year, the Foundation Center compiles a list of the top 50 corporate grantmakers. Some of the big grantmakers are:

The Wal-Mart Foundation

The Bank of America Charitable Foundation

The JPMorgan Chase Foundation

Nationwide Foundation

The Allstate Foundation

How Do You Approach Potential Corporate Grantmakers?

Once you start perusing potential corporate grantmakers, it’s important that you read and understand their grantmaking guidelines. Here are some questions to ask yourself in order to determine whether the potential grantmaker is an appropriate funding match for your needs:

Will this grantmaker fund in my state, county, city?

If yes, keep researching. If no, be sure to call to double-check that the grantmaker’s website is up to date and determine that they will not fund in your locale. Before hanging up, ask if they can recommend any other corporate foundations that might be interested in making an investment in your community.

Does this grantmaker have a current funding priority or past history of awarding grants for projects like mine?

If yes, continue your research. If no, call the potential funder anyway. Making contact with any funder will help you open up a conversation about ideas that they have not considered or else will lead to them giving you the names of other potential funders.

Are the grants that this grantmaker has awarded within the funding range of the funds we need to implement, expand, or evaluate our project or program?

If yes, you’re ready to determine how the grantmaker wants to be contacted initially. If no, take a thorough look at your project’s individual line item expenses. Ask yourself if any one line item can be funded as a stand-alone component of the entire project. If it can be, then prepare your letter of inquiry based on the one line item need that fits the grantmaker’s funding priority and range of grant awards.

What Is the Outline of Your Telephone Call to a Potential Corporate Funder?

1. Ask for the program officer who reviews grant proposals in your specific area of funding. Remember, you reviewed the grantmaker’s funding priorities in advance of this call and you are able to quickly name an area of funding that allows you to be transferred to the appropriate corporate foundation program officer.

To read more of this post, visit our Online Conference Community: http://dsaia.pathable.com/#discussions/6070

And be sure and catch Dr. Browning in action at the 2012 DSAIA Conference in DC! See the entire schedule here: http://dsaia.pathable.com/#meetings

Key Factors for Driving Board Development

Down Syndrome Affiliates in Action (DSAIA) — Tue, 17 Jan 2012 16:03:46 GMT

By Jane Page-Steiner, President, JPS Nonprofit Strategies

Last year I attended the National BoardSource conference in Orlando, while there I met board researcher, Mary Hiland, Ph.D of Hiland Associates. Recently she shared with me the results of a small study she conducted with nonprofit boards. The study focused on the life cycle of boards and board development. While this was a small study I think it produced some interesting preliminary findings.

Study participants identified three critical factors that influenced or drove board development and change:

1.Outside governance expertise or training– a “nudge” during a facilitated board training or a board member attendance at an outside training contributed to a new vision of the board.

2. The Board Chair- critical in creating (or inhibiting) movement and building momentum for change, in partnership with the executive director. The board chair usually engaged a few other board members, building a small group of champions for change.

3. Intention- Study participants described a specific, articulated intention to develop the board: ”We were obsessed with board development.” “Status quo was not OK.”

Is your board producing the results you need to achieve your organizational goals and mission? Does your board understand the needs of the organization and have the ability to work as a collective group to plan and implement strategies? Does your organization help each board member to bring their best skills, connections and resources to the organization?

What have been your experiences with your board?

Jane is the first presenter in the DSAIA Board Development Webinar Series which begins tonight (Jan 17^th) at 8 pm Eastern. Tonight’s presentation is entitled “Board Development 101”. DSAIA members are encouraged to register their entire board for this valuable training. Attendees who complete all six sessions will receive a Certificate of Completion. Registrations will be taken until 30 minutes prior to the webinar. To register or to see the complete list of topics in the series, go to www.dsaia.org/webinars.

You can also attend one of her presentations at the upcoming DSAIA conference in DC Feb 29-Mar 3, 2012. To view the sessions, go to http://dsaia.pathable.com/#meetings.

Visit Jane’s website at www.jpsnonprofit.com, follow her on Twitter at https://twitter.com/#!/jpsnonprofit, or visit her Facebook page at https://www.facebook.com/#!/JPSNonprofit.

Paraskevidekatriaphobia

Down Syndrome Affiliates in Action (DSAIA) — Tue, 10 Jan 2012 18:55:03 GMT

By Deanna Tharpe, DSAIA Executive Director

Do you suffer from paraskevidekatriaphobia (the fear of Friday the 13^th)? This Friday some people will be so paralyzed with fear they simply won't get out of bed. Others will steadfastly refuse to fly on an airplane, buy a house, or act on a hot stock tip. It's Friday the 13th, and they're freaked out. "It's been estimated that [U.S] $800 or $900 million is lost in business on this day because people will not fly or do business they would normally do," said one expert.

How did we get to this point? If you believe some legends, it started as far back as the Vikings. As the story goes, twelve gods were invited to a banquet at Valhalla. Loki, the Evil One, (god of mischief) had been left off the guest list but crashed the party, bringing the total number of attendees to thirteen. True to character, Loki incited Hod (the blind god of darkness and winter) into attacking Balder the Good (fairest of the gods). Hod took a spear of mistletoe offered by Loki and obediently hurled it at Balder, killing him instantly. All Valhalla grieved. This tale apparently explains why the Norse themselves adhere to the belief that thirteen people at a dinner party is just plain bad luck.

The Dan Brown novel The Da Vinci Code and the movie of the same name, popularized the thought that the superstition is tied to the mass arrest of the Knights Templar. Secretly ordered by King Philip of France, (and Holy Roman Emperor, Pope Clement V) the mass arrest, of all the Knights Templar in France happened on Friday, October 13, 1307. The eventual condemnation, and eradication of the Knights Templar was to follow. The King of France and the Pope got the spoils, and a date was cemented in time.

This “Friday the 13^th” DSAIA has come up with a way to make it not so “unlucky”. DSAIA is extending the Early Bird conference deadline through Friday, January 13, 2012. You have a few more days to round up your conference attendees and register them for the DC conference while still getting the additional $100 discount. Of course, DSAIA members will also still receive the $200 member discount. If you are not a member, you might consider this fact: Bring 5 people to the conference and you could pay for a year’s dues with your savings! See, it’s getting luckier all the time!

So, get rid of that paraskevidekatriaphobia by getting registered this week for the conference and move on to a REAL fear: voorheesaphobia (the fear that they’ll make yet another Friday the 13^th movie).

Registration is available online at www.dsaia.org/attendees. You can view the breakout session schedule here.

Celebrating 55 Years of Life and Progress

Down Syndrome Affiliates in Action (DSAIA) — Tue, 03 Jan 2012 16:07:55 GMT

By Deanna Tharpe, DSAIA Executive Director

Like many of you over the last couple of weeks, I have spent some time reflecting on 2011 and planning ahead for 2012. Just after Christmas, we lost a family member. My cousin Michael, who was 55 and had Down syndrome, lost his battle with leukemia. I wish I had been able to spend more time with him, but it was always great to hear childhood stories from my mother.

In reflection, I can’t help but compare Michael’s life to my own son’s and how their opportunities and experiences will be different. Fifty-five years ago, it was unusual to choose to keep a child at home rather than place him in a state “home”. Except for a brief time in a specialized assisted-living community, Michael lived at home with his parents. I can’t help but wonder how their “choices” were presented to them at Michael’s birth. When I last saw Michael back in 2010 before I moved from Texas, his dad commented on how great Joel was doing and how much progress the world had made since Michael was Joel’s age.

He was certainly on target there: medical advances, educational advances, inclusion, awareness. Although professionals have helped us make leaps and bounds, it’s the creation and the evolution of the local Down syndrome parent group that I find the most fascinating. Groups are celebrating thirty and forty years serving their community, and yet new groups are still forming every day because of the need in their area. Where would the greater DS community be without the contributions of these local organizations? Would we have successful programs like prenatal/new parent outreach, medical outreach, educator support, teen/adult services, employment support and the like?

The DS community is lucky to have such great leaders at the national (and international) level, but even more fortunate to have such great leaders in each and every local organization across the country. So, as we reflect together, let’s remember that your group plays an important part in the life of a parent who is making big (and life-altering) decisions every day. Yes, it is a heavy responsibility to carry as a group leader, but DSAIA knows that you are up to the challenge. And so are we.

And that is where the planning comes in. DSAIA is comprised of groups who are facing (or who have already faced) the same challenges as you are currently. Some leaders are parents, some are not, but all are working toward the same goal. As you play a role in the lives of individuals with Down syndrome, we hope that you will allow us to provide a different type of support to you as group leaders. In 2012, let’s not forget where we were as little as fifty years ago when Michael was a child. We’ve come a long way but we have a long way still to go. DSAIA is excited to be on that journey with you, as I am personally. Happy New Year!

DS Group Therapy: Counting Down the Last Fundraising Days of 2011

Down Syndrome Affiliates in Action (DSAIA) — Tue, 27 Dec 2011 16:25:51 GMT

By Deanna Tharpe, DSAIA Executive Director

What a great holiday! I realize many of you have packed it in for the year, spending time with your family and putting everything on “auto-pilot” through the 1st. Although it sounds like a great plan, you may be allowing funding to slip through the cracks. Did you know that donors are looking for last-minute donation opportunities for 2011? Tax deductions are a big part of this. What else could be responsible for Network for Good processing 10% of annual donations in the last two days of the year with a significant spike between Noon and 7pm on December 31st?

Here are some simple year-end fundraising tips... you just need:

•· A good email list

•· A good email program

•· Donation button capability on your website

Update your website with Holiday News! Post pictures from holiday celebrations (featuring your members with Down syndrome) on your site! Provide an update on needs you hope to fill in 2012 on your website. Make it short and concise because your reader’s attention is short as well. Think Bullet Points! Put that featured holiday message on the homepage – not buried somewhere several clicks away. Remember that short attention span?

Did you know that online giving grew 14% last year despite a difficult economy? Is your ‘Donate Now’ button (remember, you are supposed to have one?) hidden or too small? Have your webmaster correct that today! Remember, make it easy to donate!

Use FaceBook for more than Words with Friends. Write some FaceBook updates with pictures today but schedule them to post throughout this week. It’ll be good to show up on your fans NewsFeeds all week – when they are playing around on FaceBook (probably on Words with Friends). Use Hootsuite or TweetDeck to help you schedule them NOW for posting LATER.

Send a brief (BRIEF) email to everyone before New Year’s Eve with a reminder that there is still time to make their 2011 donation – and it’s the last chance to get a tax donation this year. Reinforce your key message of what you want to accomplish in 2012 using the bullet points you developed for your website earlier. Have the ‘Donate Now’ button prominent in your email communication. (Don’t make them go to your website to donate….you have to make it EASY!!!)

And after you have done a great job strengthening your year-end fundraising, be sure and view some of the great archived webinars in the DSAIA Repository including:

Creative Fundraising Strategies for 2011(still great ideas for 2012!)

Grant Writing for Dummies (a 6-week video course to get you started!)

Happy Fundraising and Happy Holidays from DSAIA!!!

Note: DSAIA webinars are available to members only. If you are part of a member group and do not have access to our Members Only section, please contact your organization's staff/board president to remedy that. If you are not a member of DSAIA and would like to find out more, contact us today!

Hands-Down the Coolest New Thing About the 2012 Conference

Down Syndrome Affiliates in Action (DSAIA) — Tue, 20 Dec 2011 15:51:04 GMT

By Deanna Tharpe, DSAIA Executive Director

Have you ever seen something new and think that this is going to be huge? (No, not like my hips after the holidays.) I mean….you know that something is going to be a hit before it ever launches. Oh, is that how insider traders feel? Eek…that’s even a worse visual, huh?

I’m talking about a new online social community that DSAIA has made possible for our conference attendees in 2012. I couldn’t GET more excited about what we have in store for our conference-goers this next year. Remember back in the good ol’ days when you wagged around your conference program because that is where you marked up your schedule? That is all a thing of the past. How about looking at the schedule (presenters, descriptions, the works) ahead of time in the comfort of your living room and then downloading your choices onto your laptop or mobile phone or maybe just (do people still do this?) printing it out!?!

How about (and this is the part I LOVE) scheduling your Capitol Hill visits with other groups in your state online so that everyone has the correct information and changes can be made incredibly easy and without so much as an email? Yes, that is what our new online community can do for you. I just keep thinking how much easier it would have been in 2009 if we had this amazing tool! Thank goodness we have it now…and it comes FREE as part of your DSAIA conference registration.

Now add on to all of that….a way to contact presenters ahead of time, to talk to exhibitors and sponsors about their product and to engage in conversations with other attendees before you even arrive in DC. Yes, you can do all of that. What about searching for other attendees who are interested in Diversity Outreach or Education? Yes, you can do that. What about connecting with other board presidents or treasurers or staff? Yes, you can do that too! Plus, we connect to your social media accounts!

I almost forgot the most important part – the community will stay up until time for the next conference! Meet someone at the conference and lose their card or forget their name or organization? Find them online!

The tentative schedule is up now but we are waiting on you…your interest in breakout sessions will help us double-up on topics that get the most interest.

You spoke, we listened. Enjoy.

You can view the community by visiting http://dsaia.pathable.com including the tentative breakout schedule. (But get registered…because that is where the fun begins!)

Special thanks to Mac Macsovits of Mile High DSA for his never-failing knack of pointing me in the right direction! You’re awesome!

Just in Time for the Holidays - A Good and Perfect Gift

Down Syndrome Affiliates in Action (DSAIA) — Tue, 13 Dec 2011 14:55:33 GMT

By Mark Leach, DSAIA Board Member

In the past few years, a number of parents have published memoirs on raising their children with Down syndrome. For this holiday gift-giving season, though, I wanted to call your attention to Amy Julia Becker's A Good and Perfect Gift.

Some of you likely are familiar with Amy Julia and her daughter Penny from Amy Julia's years of blogging. Her posts have been passed around through social media and e-mails precisely because of her compassion in dealing with issues that for many are difficult to express. This same caring attitude runs throughout her wonderful memoir about her pregnancy with Penny and the next few years when Penny welcomes her little brother.

For me, the title A Good and Perfect Gift was perfectly apt. Her memoir was a gift of reminding me of the many memories I have of my own daughter's early years. Reading about expecting Penny, Penny's birth, early intervention therapies, and celebrating Penny's accomplishments brought forth corresponding memories I have of Juliet at that age--memories that become more distant and need to be remembered with each passing year.

Amy Julia also writes eloquently on the subtle (and not-so-subtle) pressure mothers of children with Down syndrome experience in subsequent pregnancies. Society and many in the medical community do not want to see that prenatal testing can be stigmatizing to parents of children with Down syndrome. This is seen particularly when, in subsequent pregnancies, parents are regularly asked whether they've "made sure this time" by having prenatal testing. It is important for Amy Julia to have written about this pressure to have testing.

It is also important that Amy Julia wrote so lovingly about her experience raising Penny. She writes of being changed by Penny, and how too many do not have the opportunity to share the "good and perfect gift" that a child with Down syndrome can be. She resigns herself to trusting "that the story of our family would speak for itself." Her memoir furthers the telling of that story, even in its structure of having 3 parts with a total of 21 chapters. The Beckers' story is one that is common to many of us fellow parents, but uncommon, even "abnormal," for most in society. And that is why giving Amy Julia's new book A Good and Perfect Gift makes for a perfect gift this holiday season. It will introduce your loved ones to a story that will change them, and our society, for the better for individuals with Down syndrome.

To find out more about Amy Julia Becker, visit her website at http://www.amyjuliabecker.com/ . You may order the book from Amazon by clicking on the following link: http://www.amazon.com/Good-Perfect-Gift-Expectations-Little/dp/0764209175/ref=pd_sim_b_1

DS Group Therapy: Making An Investment in Your Board

Down Syndrome Affiliates in Action (DSAIA) — Tue, 06 Dec 2011 16:10:55 GMT

By Joe Meares, DSAIA President

I travel a great deal with my “real” job. This gives me the opportunity to meet with many DSAIA members and to help recruit new members. In conversations with ED’s and board presidents, there is a common theme, regardless of the size of the organization; “We need our board to become more engaged and more involved”.

This theme resonates with both volunteer driven organizations and organizations with staffs of 5, but, board members understanding and effectively performing their duties is certainly more crucial for organizations that are entirely volunteer driven or have limited staff.

In 1999, I was recruited to my first nonprofit board, a trade association representing two states. I moved up the ladder and was serving a term as president in 2007. By then I was serving on four nonprofit boards and I’d received a total of two hours of board training. I seldom missed meetings, did what I was asked to do within my skill sets (or comfort level), but, “the job” didn’t come with an instruction manual. In total, I’d sat through 500 hours of board meetings, 50 hours of strategic planning, but, only 2 hours learning my job as a director of the organizations.

I now see board service as a privilege and volunteer service doesn’t mean “as time allows”. Too often I hear stories of board meetings when less than half of the leadership is attendance. I also believe it’s not fair to ask someone to serve on a board without training them for the job and responsibilities. This certainly wouldn’t work in our careers.

Board training is crucial if your organization has a working board and necessary even if your board’s primary function is governance and direction. “Continuous improvement”, especially with board leadership, should be a part of our organizational culture, not an ideal stated in a seldom viewed document.

Recognizing a problem is the first step in solving a problem. DSAIA’s mission includes offering tools for continuous improvement and board development and training ranks high on the list of products we are routinely asked to provide.

The DSAIA Training and Education Committee have addressed these requests. Beginning in January, DSAIA will begin a six-month board training series featuring professionals from the nonprofit community presenting on topics such as Board Roles & Responsibilities, Fundraising with Your Board, and even Strategic Planning with Your Board.

I hope each ED will encourage and each president will insist ALL of your board attends this valuable series. Ninety minutes a month for six months is a small sacrifice to better execute the responsibilities of the JOB required of board service.

I already know of 15 individuals who will be attending this series; the board members of your trade association!

To register for the six-month series (sessions are scheduled on the third Tuesday of each month at 8 pm Eastern), visit the DSAIA website at www.dsaia.org/webinars. The Board Development Series is open to DSAIA members only.