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

5 Simple Ways to Help Someone Living with Spina Bifida / #GivingTuesday

 

Giving Tuesday

 

 

Today is Giving Tuesday, a movement for social good that is taking social media outlets by storm. 

Thousands and thousands of people are sharing ways in which we can all give back to great causes. 

I don’t wish to add to the cacophony of causes by asking you to donate to this or that. Instead, I want to give all of you — even those with limited funds some tips on how you can support a friend or loved one who has spina bifida, or who lives with someone who has spina bifida (caregivers need support, too!) 

So, read on for some musts and must-nots.

 

1. Don’t exclude us from social gatherings. 

I remember how painful it was growing up, and the teen years were just as awkward as my early years. It hurt me deeply when I found out some of my girlfriends were hanging out and choosing not to invite me. The reason? They thought I might bring my mom along. Although it wasn’t true at all, it still hurt. My so-called friends didn’t think I was independent enough to attend a social function on my own, without my parents at my side.

If you have a friend with spina bifida, ask them what hobbies or activities they enjoy. Invite him or her to your next outing. If you have any doubts as to what their capabilities or limitations are, ask, but never assume. 

 

 

2. Ask us for help or advice when you need it. 

Believe me. This can actually be one of the greatest gifts you will give someone with spina bifida. Many of us with spina bifida are so tired of being “helped” all the time, and many times people won’t approach us to ask a simple favor out of fear that we won’t be able to help, or we’re too “burdened” by our lives. That, if you ask me, is an even greater burden.

So, go ahead and ask! The worst possible thing we could say to you is “no.” 😉

You might even find that we have a lot to offer and give to others. 

 

 

3. Don’t tell us about every medical study you’ve read about pertaining to spina bifida! 

No, seriously. We don’t want to hear it. Especially if it involves the prevention of spina bifida, medical research is based on a lot of different variables, and while your intentions may be noble, mentioning something like this can sound like you’re trying to “fix us.” Most people with spina bifida go through countless surgeries and hospitalizations, and often have different therapies to learn to maximize their potential, physically. Many times, if there is a procedure we can benefit from, chances are it’s already making the rounds in online support forums for families with spina bifida!

 

 

4. Don’t tell us God will heal us, or that there’s a reason we have spina bifida. 

I’m a deeply religious and spiritual person, and I have my firm beliefs. I personally do believe things happen for a reason, but if you’re saying this to me after I tell you about spina bifida, you’ll come off like a total jerk. Does that mean God chose for me to deal with spina bifida? Maybe. Then again, there are a lot of great things in my life that have come from having spina bifida, and also, a lot of great things that don’t have absolutely anything to do with that.

Still, never put us on pedestals because of having spina bifida. That’s just…creepy. 

 

 

5. We’re not sheltered. You can talk to us about…anything. 

I don’t know where this crazy misconception was born that people with spina bifida aren’t exposed to certain things– like sex, alcohol, rock n’ roll, the rise and fall of Communism, and Miley’s infamous twerkfest. 

We’re human. We read the tabloids from time to time, usually in the bathroom, just like you do. 

And we also like to party. Hey, you can’t expect us to sit around and watch C-SPAN all day, right? (Fun as it sounds.) 

What’s more, many of us have graduated high school, or even college or grad school. We like to talk. And I love Google and Wikipedia! So, even if I don’t understand what you’re talking about, give me about 30 seconds with my phone to impress you. 😉

Oh, and we also have brag-worthy lives filled with riches and diamonds and yachts and filthy-rich-jetsetting, so make sure not to hog the entire conversation. 😉

 

 

Hopefully that sheds a little light on some basic things you can do to keep someone with spina bifida in your life. (Yes, we grow tired of being overlooked, just like you would!) The most important thing to remember is that our lives don’t revolve around having spina bifida. There are so many facets of our lives, and many of them are similar to yours. 

Also, like you, we hate twerking.

Happy Giving Tuesday!  

–Laurita ♥