The Laurita Spina Bifida Project to launch at Hispanicize 2016

Why, yes. It has indeed been a while.

Mea culpa. I may not have been fully “present” on Holdin’ Out for a Hero, but please rest assured…incredible things have been happening behind the scenes– miracles, actually!

Today, after 19 years of wishing, learning, waiting, and hoping, after years of prayers, all answered, not all in the way I anticipated, after much hard work and informal advocacy, it’s happening.

My non-profit organization, The Laurita Spina Bifida Project, is launching today during Hispanicize 2016– in Miami, no less.

Don’t pinch me, please. I don’t want to wake up!

It’s been a long time coming. I mean, really. I remember growing up thinking that starting any kind of organization– for-profit or non-profit– required wealth, and lots of it.

I remember wondering why I wasn’t rich and able to fulfill my dream.

I remember writing my first letter to Oprah Winfrey, and pouring my heart into it, asking her to shoot an episode about spina bifida. And I remember very clearly the polite “no, thank you” letter I received from The Oprah Winfrey Show– at age eleven.

Sometimes I wonder why I just didn’t give up and pursue a different path. I believe anyone with spina bifida can be just about anything within some reason. I could have done anything.

Instead, I chose the road less traveled. The one that hadn’t been trodden before– the one I had to pave myself.

But I haven’t walked it alone. Oh, no. There have been angels. Dozens, hundreds, perhaps thousands of them. And they carried me on their wings whenever I was too exhausted, too angry, too bitter from the failed efforts to keep flying.

It is now that I realize it. My “failures” weren’t failures at all– they were practice; my boot camp. With teachers, mentors, trainers, fellow advocates, cheerleaders, I worked through these failures and got up again.

My initial vision was to host a launch event at a restaurant in Orlando, close to where I live. Instead, I am in the heart of Downtown Miami, surrounded by fellow bloggers, journalists, entertainers, photographers, marketers, and seasoned non-profit industry veterans. Many of these are people I call very close friends.

In retrospect, I cannot imagine launching my precious childhood dream anywhere else, surrounded by so many of the people who are actually helping to make it happen!

Today, as I prepare to meet friends, family, and colleagues for Happy Hour at Toro Toro Miami and our extended community on Twitter at 5:00 p.m., I’m sure we’ll have a lot of last-minute details to think of.

As for me, I’ll also be reflecting on everyone, everything, every incredible moment that has brought me– us– here.

Today, I finally know it was all for good.

Please join us today on Twitter using the hashtags #TheLSBProject and #SpinaBifida (#EspinaBífida para español, también). Be sure to RSVP here to be eligible to win some awesome prizes!

And if you’d like to contribute to our crowdfunding campaign, that’s here.

To see the fabulous press release that my friends and colleagues at Hispanicize Wire published about our launch, please click here.

 

Till tonight! And…thank you. 

Love,

Laurita

Join Me in Getting Covered #TakeCareChat

Disclosure: This post is part of a campaign with Ad Council and Get Covered America. I will be compensated for publishing this post and for participating in the Twitter chat. All ideas and opinions are my own. 

 

If there’s someone who truly understands the value of having good health insurance, it’s me– trust me. I certainly wouldn’t be here without the vigilant care of many good healthcare providers and nurses, and there were times in my childhood when I was literally in and out of the hospital every other week.

Sadly, more than 1 in 6 Americans don’t have health insurance.

This is mostly due to one of the following reasons:

  • They don’t receive coverage from their employer 
  • They cannot afford coverage
  • They were previously denied coverage because of a pre-existing condition

 

Under the new Affordable Care Act, people cannot be denied health coverage because of a preexisting condition.  This is fabulous news for me, having spina bifida and hydrocephalus! Thanks to the ACA, insurance companies can’t turn me away because of that. 

I feel very blessed and fortunate to have access to good healthcare, and I don’t wish to take that for granted for a single second. But, if you’re not willing to take my word for it, perhaps you’ll listen to this adorable menagerie of pets who have a message for you:

 

 

What’s more, most people will have to pay a fine if you don’t enroll in healthcare up by March 31st. The 2014 fine is $95 for an adult or 1% of a person’s income, whichever is greater. (The fine is $47.50 for a child, and a family can only be fined up to $285.)

I’ll be joining Ad Council and Get Covered America TOMORROW from 1 to 2 p.m. E.T. during a Twitter chat where you can learn more and ask questions about getting covered. Be sure to follow @GetCoveredUS on Twitter and Tweet using the hashtag #TakeCareChat to participate in the conversation!

 

Parrot

In the meantime, you can visit GetCoveredAmerica.org to find out how you can enroll in health insurance, and to get answers to some frequently asked questions about the process. There are also some pretty awesome tools on the site, like the Get Covered Calculator, which can help you discover how much assistance you could qualify for to help pay for your insurance coverage.

Figuring out how to navigate the ins and outs of the ACA can be daunting, especially since it’s so crucial to your health and to the health of your family. But with the proper tools and resources, you’ll be enrolling in no time– and hopefully by the deadline of March 31st!

 

–Laurita

Keeping Perspective: ‘Hero’ Spencer Day Twitter Chat a Success!

When you’re going through life, struggling to keep up with everything that’s going on with you, around you, it can be a real challenge sometimes to remember why you “do what you do.”
Three years and eight months ago, I had the opportunity to meet my new musical “idol,” contemporary jazz singer and songwriter, Spencer Day. I was simply overjoyed to meet him, and I honestly never thought much would happen after that.

 

DSC01390Spencer and me, enjoying a cup of coffee in NYC in August 2010. 

 

I couldn’t have been more wrong.

Since our initial encounter in Clearwater for a jazz festival, after which we talked at length and I briefed him on my campaign for raising awareness of spina bifida, we have remained connected. He knows I’m moving forward, deciding what the next step will be for this cause, and he wants to be there to support it, in any way he can.

Several months ago, the opportunity arose for me to be involved in helping his career, by collaborating with his fan club and promoting events, music, and Spencer’s latest projects on different social media channels.

Out of all the work I’ve done thus far in my life– including past jobs– few things have been as rewarding for me as the experience of being a part of Spencer’s Fan Club Social Media Team. We started as a motley crew, an assortment of people who clearly share a common interest– an enthusiasm for Spencer Day’s music.

About a month ago, a crazy, random idea popped into my head: Hey, guys, why don’t we host a Twitter party for Spencer? 

It seemed like a harebrained project to take on, considering I’m always on the go, and everyone is busy during the holidays. But we decided to do it.

Yesterday evening, I hosted, along with Spencer as our guest of honor, a Twitter chat with many of Spencer’s biggest fans, in addition to quite a few people who are new to Spencer’s music. The conversation was lively, informal, and very funny at times! Attendees were encouraged to ask Spencer anything– and they did, and he responded. 😉 

As I sipped on my coffee (in my pajamas!) while trying to keep up with the conversation thread, I marveled that such an awesome cyber event could be pulled off in such a short window of time. I also couldn’t help but feel gratitude toward all of the people who participated– even if only for a few minutes during their busy evening.

As a social media consultant, the number of “impressions” or “pageviews” matters. It’s a measurement of quantifiable success, and it’s the most “tangible” evidence of whether or not an online event was a success.

As a person, however, I realized that shouldn’t matter to me. 

What mattered is that everywhere I looked in my Twitter feed, I could see familiar “faces,” avatars and usernames of my friends, some bloggers, some non-bloggers, who showed up in support of me– and in support of Spencer. 

We also got to reward some of Spencer’s fans and followers! We gave away 5 copies of Spencer’s latest album, “The Mystery of You,” as well as 6 digital copies of Spencer’s holiday album, “If Christmas Doesn’t Kill Me.” It was so rewarding to make people happy by sharing his music!

The report I generated afterwards showed that, in the past week, the hashtag #SpencerDay has had over 1.8 million impressions.  That’s not bad at all, considering how many holiday/Christmas parties, family gatherings, business events, and other commitments everyone has going on during this season, that make it difficult to participate in online events.

 

SpencerDayTwitterResults

 

For a social media consultant, those 1.8 million impressions are the definition of success. 

For me, however, it’s those familiar faces, the “avatars” I know so well, that made me feel like a winner. 

I’m truly blessed to have so many people who genuinely support and “get” what I do. Even my parents, who years ago found the words “blog” and “Tweet” intimidating, pitched in by Tweeting and making sure I had a hot mug of coffee to help me stay alert. 😉

Yes, it’s true– there are people who might measure success in different ways– by monetary earnings, job promotions, or how many conference speaking gigs they landed in a year.

That’s all good and enticing. (Hey, who wouldn’t want all that?!)

But sitting at my laptop, Tweeting furiously and watching as the stream flowed constantly with new comments, questions, and retweets from people both familiar and unfamiliar, I couldn’t help but feel like the luckiest girl in the world. 

Thank you, from the bottom of my grateful heart, to all of you who joined, shared, Tweeted, promoted, and encouraged. Thanks to all of you who had the most awesome things to say about Spencer’s music, whether it was the first song you’d heard or if you’ve been a longtime listener. 

Thanks for being there anytime I’ve wondered if I could do something. Thanks for lifting me up.

 

Thanks, above all, for helping me to keep my perspective.

 

If you aren’t already following Spencer, please do so here:

 

Spencer Day on Twitter 

Spencer Day on Facebook 

Spencer Day Fan Club on Twitter 

Spencer Day Fan Club on Facebook

 

 

Love,

Laurita ♥

A Different Campaign Continues

Yes, I know there are other things going on today. Namely, one big thing— the most historic presidential election in U.S. history. Don’t think I’ve forgetten; I’ve already voted! 😉

But after weeks of being bombarded on both my Facebook and Twitter feeds with political post after political (or apolitical) post, I wanted to take a breather and reflect on the awesomeness that was October.

The beginning of November marked the end of Spina Bifida Awareness Month for this year. To say it was a smashing success would be the understatement of the century– we killed it! 

But the campaign isn’t over. Yes, the Walk-N-Roll donation link is still active. Please share, and donate away!

There are so many issues at stake besides prevention– quality of life for children and adults alike, educating Ob/Gyns about the facts on spina bifida so they can give impartial but encouraging information to expectant parents, and not to mention those with spina bifida all over the world, many who might not be as fortunate as we are to have such a strong community.

I know I’ve thanked you over the past few weeks for all your support– but there are a few people and organizations that I would like to reiterate my thanks to.

First, I need to thank Bravo! Cucina Italiana for their support and for providing the location for my local fundraiser for the Walk-N-Roll for Spina Bifida. We raised $120 that night, and we also raised awareness!

Also, I want to take the time in this post to personally thank each and every one of the sponsors, bloggers, and supporters of the very first Walk-N-Roll for Spina Bifida Twitter Party I co-hosted on October 17th.

 

Chantilly Patiño was the driving force that organized, planned, coordinated and then hosted the Twitter chat. She also sought out sponsors, got us donations for prizes raffled during the Twitter party, and wrote up the script and designed the promotional graphics. Have I said THANK YOU? Not enough!! Chantilly has indeed become a wonderful friend, fellow advocate, and key supporter of my spina bifida campaign.

Chantilly also took it upon herself to help me moderate the Spina Bifida Advocacy Network, which we officially launched during the Twitter party. Currently, our group boasts nearly 500 members and growing!

When all was said and done, our jaws dropped collectively when the Twitter party report revealed we had nearly 2 million impressions! A truly miraculous, magical night for the Spina Bifida cause.

Now, it’s time to really recognize all the sponsors/organizations that made it happen. I encourage you all to visit their Web sites and support them in whatever way you can!

 

 

Whether they blogged about the awareness campaign, donated a prize for the Twitter party, co-hosted the party with us, or simply sent us good vibes, all of these sponsors now deserve to be showered with love!

A very special thanks goes out to Latino Rebels for immediately following up the Twitter conversation with a TweetReach report showing that social media can make a difference for a great cause!

 

 

I could never thank them enough for taking that extra step to ensure everyone understands the significance of that night!

 

So yes…a very special election is taking place today in the U.S. I’ve already voted, and I hope you get out to vote, too! But as far as my preferences and values are concerned…my vote goes out to the Spina Bifida cause. I believe in it, and I hope you’ve come to believe in it as strongly as I do.

Yes, October is over. But now the real work begins– which is to keep spina bifida in the public eye, and in the minds and hearts of everyone.

 

Love,

Laurita ♥

Awareness: The End, Not the Means

When I set out to be captain of my own team again for the SBACFL Walk-N-Roll for Spina Bifida, I never imagined just how many people my humble efforts would reach– in Central Florida, as well as beyond.

On Wednesday night, Chantilly Patiño of Multicultural Familia and Bicultural Mom moderated our very first Walk-N-Roll Twitter Party for Spina Bifida.

An unprecedented online event meant to raise both funds and awareness, we managed to raise $120 for the Spina Bifida Association of Central Florida. More importantly–we did raise awareness. During this Twitter party, the hashtag #SpinaBifida had nearly 2 million impressions! This is a huge leap forward for the spina bifida cause.

I could never thank Chantilly and all the sponsors and co-hosts enough for all their hard work and dedication to this cause. I’m truly moved by everyone’s show of support. I was also amazed by how many joined the conversation– both people who had been touched by spina bifida, and people who knew nothing of spina bifida before this event. Both groups alike joined forces for this effort, and I will always be grateful to all of them.

On Thursday evening, I hosted another event– in person, at Bravo! Cucina Italiana, here in Orlando. Proceeds from ticket sales benefited the SBACFL Walk-N-Roll for Spina Bifida.

An intimate crowd joined us in support of The Cause, including two families who are part of the SBACFL. A special thanks to Amanda Kern, who took some beautiful photos of the event.

 

 

 Why, oh why did I have my eyes closed for this one? An otherwise beautiful family portrait, taken by the ever-attentive Bravo staff.

 

Bravo! Cucina Italiana General Manager Michael Monahan was the one who made it all happen that evening. Thank you so much for caring about the Spina Bifida community! :)


*SIGH* At every event I attend or host, I have to put up with another of Mami’s gratuitous photo shoots. #Mamarazzi

 


Our friend Giancarlo came to support our event!

 

My good friends Brett and Krystal also came out to support me! Love them.

I’m always grateful for Vionet-Edith’s support. She’s a true friend…part of the family. :)

Attendees were greeted by an assortment of appetizers and enjoyed drinks on the terrace. We couldn’t have prayed for better weather!

Speaking of prayers…my beloved priest, Father Bassam, was there to support me and my family.

 

 

I was able to share special moments with other people, including a camera crew from the UCF Cornerstone program. These college students from my alma mater are volunteering for New Hope for Kids, another one of my favorite organizations, and they showed up to interview me about my experience as a wish recipient!

 

 (There’s more photos where that came from! Stay tuned. :)  )

 

Another priceless moment that evening was reuniting with Amanda’s son Chance. Now 20 months old, this incredible little guy has touched so many lives already. Ever since the first time I met him over a year ago, I’ve felt a very strong connection to him. He is definitely very special to me. I love Super Chance! :)

(Note: All the following photos are courtesy of AmandaKern.com.)

 

 

My wonderful family is always so incredibly supportive. I couldn’t do any of it without them!

 

 

It’s true– Amanda went on a *photo* shooting rampage during the event– expect to see some photos of all the Walk-N-Roll team captains as part of the Walk-N-Roll for Spina Bifida publicity campaign!

Other attendees included Shannon Celentano’s family, Dede Mischel. Thank you so much for your support!

When all was said and done, we made $120 for the Walk-N-Roll. Hmmm…I guess that’s my number. Maybe I should play the lottery…?

I feel remarkably blessed to have so many people supporting me. Whether it’s online or off, in person or from afar, there are so many ways that people can impact a life, support a good cause.

So, thanks to each and every one of you who attended and/or promoted either the Twitter party and/or the Bravo! event. I’m amazed and humbled by your love and support.

As if these events weren’t enough to send me into “awareness overload,” a truly remarkable meeting took place on the Saturday following the Bravo event which some of you heard about on Facebook. Yes, I actually met Judy Woodruff of PBS NewsHour for the first time in person, while she was in Orlando covering the campaigns.

 

During our meeting, Judy eagerly agreed to an interview! Below is our chat.

 

And when all is said and done…whether you have given a donation or spread the word, you are helping! Awareness isn’t just a means to an end– it is the end we’re searching for.

 

Love,

Laurita ♥