(From L to R): Sophia, Alexandra Morbitzer, me, Maddy, and Olivia.

I got to reunite with many old friends during the week, and also connect with new people and make new friends. Among the most memorable people I reconnected with from LATISM ’11 was Alexandra (Alli) Morbitzer of Fit Latina. Make sure you go and “like” Alli’s page as she’s got some great content and an exciting partnership in store!

That week, I also made a few new friends who are definitely in a league all their own! I got to meet the precocious contributors of Los Tweens, a site for parents and their children ages 7 to 12. Cristy Clavijo-Kish, along with her daughters Sophia and Olivia, and Katherine Doble, with her daughter, Maddy, have teamed up with Adrian Acosta to bring Latino parents and their, well, tweens, a site that is kid-friendly and provides great content, such as interesting projects for Earth Day and Easter, and game reviews. Parents, if you’re looking for a safe site for your bilingual ones, then this is the place for you. Check them out on Facebook and Twitter.

One thing’s for sure– Sophia, Olivia and Maddy are the coolest kids you’ll ever meet, and I have no doubts that they will soon be taking the world by storm.

With Alberto Saldamando, LATISM Central Florida Co-Director and expert gamer.

Alberto Saldamando, gamer extraordinaire and writer at El Mundo Tech, is one of the most awesome friends. I’m so excited about partnering with him to lead LATISM Central Florida. We can’t wait to launch our chapter, and we’ll be planning some exciting things for the months ahead. Stay tuned!

With Maria Elena Salinas. There are few Latinas whose names seem to be synonymous with the journalism industry. ¡Que orgullo! What pride!

Maria Elena Salinas is one of the most inspiring and motivating people I’ve had the honor of meeting. I won the NAHJ Maria Elena Salinas Scholarship for journalism in 2007 when I started at UCF, and about a year ago, she commented on Holdin’ Out for a Hero after she and I began following each other on Twitter! Needless to say, meeting her was priceless for me.

At the "How to Become a Successful Vlogger and Drive Traffic to your Blog" session. Very informative!

(From L to R, Mando Rayo of LatinoFoodie.com, Ericka Sánchez of NibblesAndFeasts.com, Nicole Presley of PresleysPantry.com, and Bren Herrera of FlanboyantEats.com at the "Secret Salsa: How to Create Authentic Brand Ambassadorships & Campaigns with Latino Food Bloggers" session.

I attended many sessions throughout the week, including *AHEM* my own, Blogging for a Cause, moderated by Chantilly Patiño of Multicultural Familia and featuring my co-panelists Lisa Quiñones Fontánez of Autism Wonderland and Eliana Tardío Hurtado of ElianaTardio.com.

Eliana speaks from the heart as the rest of us listen with admiration during the "Blogging for a Cause" session.

Other sessions I thoroughly enjoyed included:

• Customizing and Enhancing Your Blog’s Design 101

• the Latinovator Lunch with Maria Elena Salinas

• How to StumbleUpon and Pinterest Traffic to your Blog of Website

• “Let Them Eat #Croquetas!” How General Motors and Bloggers Took the South Florida Social Media Community By Storm

• Building La Comunidad: How to Successfully Manage Online Latino Communities for Your Brand

Well, you know what they say! “All work and no play makes a dull boy (or girl!)” So, of course, we were mightily entertained in the evenings. Take a look at some of the hot parties put on during Hispanicize 2012. I’ll also go ahead and plug some of my friends.

With Manny Ruiz, Founder & CEO of Hispanicize, on the black carpet at the Diageo After-Party.

Manny Ruiz, Founder & CEO of Hispanicize, is a Latino entrepreneur who has been in the Marketing/PR business for a while. I was very honored when he reached out to me a few months ago and invited me to speak at Hispanicize. Every Latino/a in the social media, marketing or PR businesses has heard of Manny. He truly worked his tush off to make a spectacular event come together!

With Steven Bauer, who played Manny in the '80s classic "Scarface."

Actor Steven Bauer, of the 1980s cult classic “Scarface,” was one of several very high-profile faces you could see during the conference.

With Steven Bauer, right, and his two sons, Dylan and Alexander, at the Diageo After-Party.

One of the most amazing moments was during the “Scarface” closing party. I had met Steven Bauer the night before and chatted briefly with him and his sons after Blanca practically pushed us together to meet!

During the closing party, Steven was interviewed, along with his fellow “Scarface” cast mates Pepe Serna and Ángel Salazar. Afterwards, I made my way between them for a photo op, during which Steven proclaimed I was one of the biggest bloggers out there.” *Squeals!!!!* Definitely a moment for the books. (Remember: I’ll be posting all my “Scarface” photos, along with all my Hispanicize 2012 photos, here.)

With Eric Díaz, Principal at DK Web Consulting and fellow LATISM director in Phoenix!

I can’t stress enough how awesome it was to hang out with some of my LATISM friends in Miami! Eric Díaz of DK Web Consulting, and blogger at Social Media Spanish, was one of the more supportive people of me. During Hispanicize, he offered to help me out with my Websites, and before I even made it back to Orlando, he had already made good on his promise to get in touch with me and schedule a phone call.

As a blogger and activist, I get many offers from people who say “I’ll help you with this,” “I’ll help you with that.” Seldom do they ever follow up the way Eric did. I’m already very grateful for his support.

With Luciana "Uchi" Davidson. Uchi writes at postres.about.com!

With Bren Herrera, private chef and blogger at FlanboyantEats.com!

It was really great to be able to hang out with some of my favorite food bloggers! Luciana “Uchi” Davidson blogs at postres.about.com about desserts, and Bren Herrera is a private chef (and dare I say, a true fashionista!) blogging at Flanboyant Eats.

(From L to R) Eva Smith and Cristy Clavijo-Kish are co-founders of Latina Mom Bloggers, Bren Herrera blogs at Flamboyant Eats, and Katherine Doble blogs with Cristy at LosTweens.com.

Each guest at the Latina Mom Bloggers cocktail party was given a gift bag!

During the Latina Mom Bloggers cocktail party, I also got to hang out with Mami, which is wonderful because she got to meet all the amazing people I met, and experience many of the same events I attended. (So did Papi!)

One of my two favorite people in the world-- Mami!

Getting ready to board the Venetian Lady-- the Me Encanta Blogger Yacht Party sponsored by McDonald's!

Walking the red carpet.

With Mami on the Me Encanta red carpet.

View of Downtown Miami from the Me Encanta Yacht.

Thanks for making sure we had good Wi-Fi on the yacht!

Keeping it "cool" at the "Chill at Sea" Me Encanta Blogger Yacht Party!

Mami & Papi lookin' breezy on the yacht.

:D

Adrián Carrasquillo of NBC Latino, Jeannette Kaplun of Todobebe.com, and me. Clearly not knowing which camera to look at!

Mirna Lorena Arce of AhorrosConCupones.com, Jeannette of Todobebe.com, Denisse Icaza of AhorrosParaMama.com, and Blanca Stella Mejía of MiCaminar.com.

Jeannette, Blanca, me, Maria De Los Angeles of SexandtheBeach.blogspot.com-- and a questionable-looking pole!

So…what did I take away from Hispanicize 2012? For one thing, while my network keeps getting larger and larger, my world is getting smaller and smaller, as many of us social media junkies are meeting up at the same events!

One of the best things about seeing many of the same faces time and time again, is that you get to witness each person’s growth. I know I’m not the same person who began Holdin’ Out for a Hero almost three years ago, and I’m so grateful to have so many friends and blogging colleagues to witness that metamorphosis with me. Throughout all the trials and tribulations of putting myself “out there” in the cyber world, I’ve learned so much and been greatly blessed.

This is certainly not one of those instances in which I come back from a conference all pumped up, only to lose that momentum for evolving only weeks later. I’m already beginning to see the positive ramifications of the connections I’ve made in my stamina as a writer and in my personal long-term goals for the future.

So, I just want to take a moment and personally thank you all, maybe not by name, but as a general thank you for blessing me so richly these past few weeks. Almost everyone I came across had some sort of positive impact on me, whether they realize it or not.

I’m eternally grateful to the people at General Motors and Chevrolet, who not only went above and beyond what was expected to get me to Hispanicize (and in style!), but who also made every possible effort to include my parents in the experience. As a “sponsored blogger newbie,” it was important to me that my parents understand firsthand just how incredible GM and Chevy were to me, and to my fellow blogueras.

Thanks to Manny, Katherine, Cristy, and everyone who played a role in organizing the event.

I’m also very thankful for the awesome staff at the JW Marriott Marquis– they didn’t miss a single mark in making our stay fabulous!

But here’s the thank-you that I hope will resonate in your hearts: thanks to all the people who either came to my panel, or who offered their help to me in any way, who encouraged me as a blogger and as a person, or who simply understood that I see this as my purpose. You’re the ones who made my week. You’re the ones who keep me going.

And, as we say in español, ¡Pa’ tras, ni pa’ coger impulso! (Don’t step back, even to pick up the pace!)

Abrazos (hugs),

Laurita ♥

© 2012, Laurita. All rights reserved.

So alas, here’s the second installment of my Hispanicize 2012 series!

On the first official day of the conference, Tuesday, April 10th, it was very exciting to begin seeing friends from all over the country pouring into the JW Marriott Marquis. I reconnected with many old friends from LATISM, NAHJ, and also from many local organizations I’m familiar with.

I started off the day at the Non-Profit Case Study: Using Social Media to Deliver Health Messages to Engage Latina Moms and Families" presentation, with Carla Briceño of Bixal and Lilliam Acosta-Sánchez of March of Dimes' nacersano.org.

One especially interesting session I started the day off with was with Carla Briceño of Bixal and Lillam Acosta Sánchez of nacersano.org, the Latino outreach branch of March of Dimes. I had the honor of being a co-panelist with Lilliam at LATISM 2011 in November. The information they gave during the session really highlighted key ways that organizations, whether non-profit or not, can engage with the Latino community and get their message across effectively using online channels.

During the panel, Lilliam actually called on me to explain folic acid’s role in helping to prevent spina bifida! It caught me completely off-guard. Fortunately for me, I can talk about this, even in my sleep.

An amazing, Caprese-style appetizer at lunch!

A great turkey wrap. Because ALL good food deserves to be photographed!

Right after lunch, I ran into one of my good friends, who until that moment, had been online-only– Eva Smith, legendary co-founder of Latina Mom Bloggers!

With Eva Smith of Latina Mom Bloggers. What an awesome moment!

Then I was distracted by coming across even more of my cronies– Cristy Clavijo-Kish, Libby Juliá-Vázquez, Lynn Ponder, Fernando Rodríguez, Andy Checo, and a new acquaintance, Albert Collazo (Albert and I became fast friends, though!).

(From L to R): Me, Cristy, Libby, Albert, Lynn, Fernando and Andy. Priceless pic!

Getting my badge always makes it more official!!

Perhaps one of the most invaluable things for me was being able to personally thank the people who made it possible for me to attend Hispanicize. I loved meeting Katherine Johnson!

With Katherine Johnson, one of Hispanicize 2012's organizers. She's so awesome!!

Ever since we met during BlogHer ’10 in New York City, Blanca Stella Mejía and I have been like blogger besties! To say that she has been an inspiration, a mentor and like a sister to me would be a vast understatement. She has been one of the most supportive people for me in the social media world, and offline, she’s the best!

Blanca was one of the first blogueras to interview me for her own blog, MiCaminar.com. She, Jeannette Kaplun of Todobebé, and Maria De Los Angeles of Sex and the Beach are no doubt my best friends in South Florida!

With Blanca. I can't imagine what my life would be like without knowing her!

The next part of my day was spent cruisin’ around in a Chevy Volt, which is an electric-powered car. It will use electric power for the first 40 miles, then the battery takes over. The Chevy Landmark Tour was one of the most clever features of Hispanicize 2012, as it took attendees on not only a scenic tour of Downtown Miami, but it also engaged all the senses.

With Arturo Villar, Publisher of Hispanic Market Weekly, just before we each loaded into vehicles for the Chevy Landmark Tour!

From the moment my parents and I jumped into the Chevy Volt, it was a pretty smooth ride!

The Car. A brand-new Chevy Volt.

Juan, our driver/tour guide, was great! He's from Colombia-- I love that Latin America really represented.

I was quite fascinated by some of the Chevy Volt’s high-tech features.

This. Is. Awesome.

The tour took us to the Little Havana area to see the Cuban Memorial Plaza, where cubanos who had been exiled from Cuba and who fought in the Bay of Pigs invasion are remembered with reverence.

In Cuban Memorial Plaza.

During my excursion in Little Havana, I got to meet a group of Cubans who are protesting the the incarceration of political prisoners in their native land.

Even if my interaction with them was very brief, I felt the energy of their cause, and it certainly ignited a fire in my activist’s heart.

My new amigos. May God keep them safe and guide their efforts in the name of justice.

But visiting Little Havana wasn’t all politics and patriotism. I saw a few more great sights and grabbed a bite at the famous Café Versailles.

At a very famous intersection: Tamiami Trail ("Calle Ocho") with Cuban Memorial Boulevard.

I really identified with Miami's rich heritage of revolutionaries and activists.

No visit to the most famous Cuban neighborhood in Miami would be complete without a little Latino flavor! The tour stopped at Café Versailles– where tour participants were treated to coladas (tiny shots of espresso) and croquetas– both staples in the Miami diet!

:)

How exciting!!

I'm oh-so-excited about trying one of these croquetas!

Okay, maybe MORE than one...try five or six!?

I need something to wash down the fried food explosion in my mouth...how about a coladita?

Okay, I'm sold! Can I get something dulce to go?

Too. Many. Choices. But I went with my usual, a quesito, a sweet, creamy cheese-filled pastry. Never fails!

I had sooo much fun cruisin' in this Chevy Volt. Here I am, between Juans-- the one on the left dropped our Chevy Traverse off at home to use for the week, and the one on the right was our tour driver!

Still need to explore more of this beautiful, diverse city!

Thanks so much, Chevy, for the awesome! memories!

There’s much, much more to come soon on Holdin’ Out for a Hero about Hispanicize, including a review of my panel discussion, Blogging for a Cause, with Lisa Quiñones Fontánez, Eliana Tardío Hurtado, and Chantilly Patiño. Keep checking back for updates, and don’t forget to also visit Espresso con Leche for bilingual content and more photos!

–Laurita

© 2012, Laurita. All rights reserved.

–John D. Rockefeller, Jr. 

To put last week’s experiences at Hispanicize 2012 into words would be impossible. But, with the help of pictures, some videos my friends made, and some serious link love, I hope to do this fabulous event some justice!

**NOTE:  If you’ve posted a recap of Hispanicize 2012 on your own blog(s), please be sure to link to it (them) at the end of this post! Yes, if you have more than one post on different blogs, you can share them all!

On early Monday afternoon, my family, along with fellow bloguera Myrah Duque, set off on a road trip to Miami in the brand-new, 2012 Chevy Traverse that Chevrolet was so gracious to let us borrow for the week!

Look closely...Papi simply couldn't wait to get behind the wheel of this brand-new 2012 Chevy Traverse!

I couldn't wait to crawl into the backseat!

Downtown Miami lookin' good from the backseat of a Chevy!

I had barely made it through the doors of the JW Marriott Marquis, when the goodies started pouring in! (¡Gracias, Chevy!)

Upon my check-in at the JW Marriott Marquis Hotel, I was handed my Welcome Bag from Chevy!!

I was really grateful to José Martino, who made my stay even more fun with our random conversations in the lobby.

This is José. José is awesome. Thank you, José.

This hotel was on a totally different playing field from other hotels. Everything at the JW Marriott Marquis was orchestrated to ensure the most enjoyable experience possible.

These gentlemen didn't just bring up our luggage. You'll see why I liked them so much in a second!

The bellhops gave me a full demonstration on how to use the Illy espresso machine that comes with each room!

I'm in love! Check out the hashtag I came up with: #coffeeporn

Best. Cup. Ever.

I'm seriously so happy. Or high. Maybe both.

THIS is what I loved most about our room-- the killer view!

After spending a few hours gawking at the view from my room, it was time to get ready for the Welcome Dinner with Chevy, where I would meet representatives of GM Chevy, as well as finally meet two other blogueras I’ve been in touch with for a while, Joscelyn Ramos Campbell of Mami of Multiples, and Jennifer Hutcheson of Mami 2 Mommy!

Ready for a lovely evening with the Chevy ladies!

Needless to say, my fellow blogueras and I felt VERY welcome from the get-go!

The #ChevyHispz (Chevy at Hispanicize) familia (clockwise from left): Stephanie Camargo-Ruiz, Jennifer Hutcheson, Alma Guajardo-Crossley, Ashli Bobo, Carolina Rincon-Sato, Joscelyn Ramos-Campbell, Araba Dowell, and me.

My first night at Miami could not kick off without a mojito!

We were treated to some fancy appetizers before the main course.

Even MORE appetizers...

And, la piece de resistance...steak!

And finally...the dessert. It was to die for!

The best part of the night wasn’t even the food and drinks– it was the fact that I was able to talk to the Chevy ladies about just how important the spina bifida cause is. I look forward to the possibility of partnering with them on future health-related initiatives, especially those related to the Latino community.

There are more Hispanicize 2012 updates coming, but I really have to work on recovering from the cold I caught in Miami. Argh.

Stick around– the best is yet to come.

In the meantime, please link to your recap posts below!

–Laurita

© 2012, Laurita. All rights reserved.

It was made surprisingly short because we had good company, fellow Latina bloguera Myrah Falco Duque of Coupon Mamacita, who also hails from Central Florida! We’ve been friends on Facebook for a while, and are both part of several blogger groups online, but this was our first time actually meeting, and we enjoyed getting to know each other on an otherwise boring road trip.

So, we checked in, and when I finally reached my room, I spent a good while oohing and aahing with very good reason! But more about my room in a later post. I haven’t uploaded those photos yet…

Upon arrival, I was greeted warmly by Jose Martino at the front desk.

He was so awesome, and…he made sure I got a room with a view of the bay. How’s that for getting off to a good start here?

Since Chevrolet (and GM) is my official sponsor on this trip, two fellow blogueras and I were invited to a luxurious dinner at the Epic Hotel across the street! I will have to tell you all about it tomorrow because I’m getting up bright and early tomorrow.

One important thing– I went to a session today with two dynamic women involved with March of Dimes’ Latino outreach! Yes, it was really interesting to learn how this health organization is using social media to communicate with a key demographic, including key information for families affected by spina bifida.

Oh yeah–I also took Chevy’s awesome Landmark tour and visited the Cuban Memorial Plaza, and when I returned, I joined a cocktail party for Latina Mom Bloggers– and made some awesome memories with my own Mami (now nicknamed “PR Mami.”) The linked photo is courtesy of Blanca Stella Mejía of MiCaminar.com.

Well, it’s off to bed with me.

Hasta mañana,

Laurita

© 2012, Laurita. All rights reserved.

This may not come as a surprise to all of you, especially if you’ve already glanced at my sidebar. Several months ago, I was invited by Manny Ruiz, founder of the Hispanicize Event and of Hispanic PR Blog, and by Katherine Johnson, partner at Hispanic PR Blog and organizer at Hispanicize, to be a speaker at Hispanicize!

And I’m leaving for Miami tomorrow to head for the conference!

I will be speaking at the panel titled “Blogging for a Cause: How Latino Bloggers are Using Social Media to Champion a Good Cause.” My fellow panelists will be my amazing friends, Eliana Tardío Hurtado  of ElianaTardio.com, and Lisa Quiñones-Fontánez of AutismWonderland.com . The panel will be moderated by the fabulous Chantilly Patiño  of Multicultural Familia and Bicultural Mom. Eliana has two children with Down Syndrome, and Lisa has a son with autism, and both are staunch activists for the special needs/disability community! Chantilly was instrumental in organizing and implementing my Walk-N-Roll for Spina Bifida Blog Carnival last year!

Bottom line: I have been waiting for an opportunity to meet these three amazing hermanas!

And if this great news weren’t enough to send me to the moon and back, my entire trip is being sponsored by Chevrolet!!! (Yes, *shrieks* like a prepubescent Justin Bieber fan!) I’m so honored and humbled to be selected as part of the group of bloggers and social media enthusiasts who will be sponsored by this incredible brand.

Of course, as always, I will make every effort to blog from Miami. And, be forewarned, you will be reading a lot more about my experience as an attendee with Chevy! There will be exclusive General Motors/Chevrolet events, a Chevy Landmark Tour of Miami, and panel discussions and seminars with the Chevy team.

Seriously though, it’s 1:15 and I have to go to bed. As it is, I can hardly take any more excitement!

Be sure to follow me on Twitter at @Laurita86, and to also follow the hashtags I’ll be Tweeting with: #Hispz12 and #ChevyHispz to find out about the other cool stuff going on this week.

You can also like GM in the Southeast on Facebook and follow @GM_Diversity on Twitter.

“Party in the city where the heat is on…”

–Laurita

© 2012, Laurita. All rights reserved.

Sorry, but I couldn’t resist beginning a post about “sin” and “angels” with something like that!

After two weeks of getting back into the swing of things, and getting the hang of my new job, it’s finally time to get down to business and talk about what really happened in Vegas. Sure, you know all about the fabulous hotel I stayed at, and the awesome team from Vitapath Genetics that made it all possible for me.

Now, however, I must tell you about what I learned at the Second World Congress on Spina Bifida, critical, vital information that I am even now, still digesting.

With Dr. Timothy Brei, developmental pediatrician and SBA's Medical Director. He has spina bifida too, and meeting him, a medical doctor with SB, was by far one of my proudest moments!

So, without further ado, here are some of the highlights from the sessions I attended to get informed. While I have dealt with a plethora of physical and physiological secondary conditions related to spina bifida throughout my life, I was particularly interested in listening to what the researchers had to say about the transition to adult-centered health care in people with spina bifida, as well as psychosocial outcomes in this population.

*Health Issues for Latinos with Spina Bifida

• Mark A. Canfield, Ph.D., is the Co-Principal Investigator for the Texas Center of the National Birth Defects Prevention Study. He is also the manager of Birth Defects Epidemiology and Surveillance Branch at the Texas Department of State Health Services. 

• There are 50.4 million Hispanics in the U.S. By the year 2050, Latinos are expected to form 30 percent of the U.S. population.
•  Where you are born can influence whether or not you have a child with spina bifida.

• The Texas Pregnancy Risk Assessment Monitoring System (PRAMS) was a survey that analyzed pregnancy outcomes for mother and child between 2002 and 2010 based on several variables, such as maternal smoking, the mother not taking a multivitamin daily, and maternal obesity.
• Another study analyzed awareness and use of folic acid by moms who have had a neural tube defect-affected pregnancy before. Results showed that more white, English-speaking mothers used folic acid than Hispanic, English-speaking or Hispanic, Spanish-speaking moms did.

• Latino parents of children with spina bifida tend to report less satisfaction as parents and they also perceive their kids as more vulnerable.
•  Parents born in either Mexico or Central America are more likely to have a child with spina bifida than their Hispanic, U.S.-born counterparts.

• Dr. Canfield concluded that: relative to whites, Latinos are only at a “moderately elevated risk” of having a child with spina bifida; Latinos are at greater risk if one or both parents is foreign-born; Latinos are less likely to be exposed to smoke, one of the risk factors; they are less likely to take supplements; and they are more likely to be obese.

Morning view from the the 43rd floor of the Cosmopolitan Hotel, where I was staying!

*Family and Psychosocial Concepts and Concerns in Spina Bifida

•  Dr. Grayson Holmbeck stated that children with spina bifida that come from a low socioeconomic status have a higher risk of developing behavior problems and problems with social adjustments.

• Girls with spina bifida are at high-risk for social difficulties and a negative physical self-perception.

• In the development of independence and autonomy, boys with spina bifida tend to lag behind the girls.

• Children with spina bifida tend to develop more effectively if they have many positive social experiences.

• Between the ages of 8 and 13, kids with spina bifida tend to have a very limited understanding of hydrocephalus, of the purpose of their shunts, and how it works. However, they do tend to know exactly where their shunts are located.

• In early adolescence, there tends to be a shift in responsibility for catheterization. Usually, by age 13, the child becomes fully responsible for self-cathing.

• There tends to be a shared responsibility in the bowel management routine between parent and child in early adolescence.

• The results of Dr. Holmbeck’s research indicate that factors associated with success as an adult with spina bifida include high socioeconomic status, a high level of intrinsic motivation, and less interference from the mother.

• Families in the study sample with a child with spina bifida tended to be less cohesive, and the children with spina bifida were more passive in their interactions with the family.

• The sample of adolescents without spina bifida who matured early demonstrated more family conflict than those without spina bifida.

• One possible hypothesis that might explain why there seems to be less conflict is that families with a child with spina bifida tend to respond less to changes during puberty.

• There is evidence that maternal overprotection negatively affects children with spina bifida.

• Maternal criticism was predictive of depression symptoms in the sample of youth with spina bifida.

• During the study, researchers asked to observe youth with spina bifida while interacting with a friend of their choice. The majority stated that they didn’t have good friends or they chose a sibling or cousin.

• Social function varies in children with spina bifida. In many cases, when a child with spina bifida nominated a peer as “best friend,” that nomination wasn’t reciprocated.

• Researchers conclude that it’s critical to study young people with spina bifida during adolescence. The psychological problems are just as important as the physiological ones.

• Also, children with spina bifida with a low I.Q. tend to have more parental interference.

Attendees listen intently during one of the World Congress sessions.

*Medical Issues and Preventable Conditions Among Adults with Spina Bifida

• Adults with spina bifida and urinary incontinence are .77 times less likely to be sexually active.

• There is no distinction in satisfaction with life between men and women who are sexually active and those who aren’t.

• The majority of adults with spina bifida without hydrocephalus in the study began dating at 18 years of age. In adults with spina bifida and hydrocephalus, the age at which they began dating was typically 21.

• Only 38 percent of men and 54 percent of women with spina bifida had been adequately informed by their doctors about sexuality.

• Doctors were advised during the presentation to be professional when discussing sexuality with their patients, and not to assume that the patient knows as much as they do.

• Researchers concluded that there isn’t much research or information about young adults with spina bifida and sexuality.

• This next part was by far the most harrowing portion of the educational sessions. In this part of the seminar, attendees learned just how high the death rate is among adults with spina bifida who are admitted to the hospital with one disease or injury and end up contracting another disease or obtaining another injury.

• Several disease and conditions studied include urinary tract infections, complications related to surgery, pneumonia, and infections due to ulcers.

• The vast majority of deaths analyzed in this study were due to sepsis.

• In the 65+ group, the majority of deaths were due to stroke.

• 7.2 percent of the hospitalizations in the study were due to UTIs; about 2 percent were due to bacterial pneumonia.

• The UPMC Wellness Center is dedicated to helping prevent these complications.
• The speakers conclude that if we don’t take the initiative to prevent these complications, we should prepare ourselves for the reality that 1/3 of patients will be re-hospitalized and 1/3 of them will die.

Dr. Irene Dietz is a pediatrician specializing in developmental behavioral health and neurodevelopmental disabilities. She's awesome.

*Transition to Adult Health Care

• Many adults with spina bifida reported that they want to take charge of their own health care.

• Many adults with spina bifida say they “like” being the ones that deal with the health insurance companies.

• Using peer mentors and greeters allow transitioning young adults to talk to other teens about their needs and concerns.

• Feedback from teens indicates teens prefer when they can contact doctors directly themselves, instead of doctors talking directly with parents.

•  They appreciate having someone to talk to who has been through the transition process.

•  Transition is defined in part as the point at which the individual begins to manage their own care of the chronic condition.

• Role negotiation with the parents over issues such as incontinence makes it a particularly stressful time for young adults.

• The social implications of living with a “disability” and the potential for bowel or bladder accidents can make the transition period even more challenging.

• Conclusions included: “Healthcare providers working with YASB transitioning to adulthood need to reinforce the importance of increasing self-efficacy in order to positively influence health competence. Future research should investigate the relationship between perceived health competency and self management.”

With Cindy Brownstein, SBA's President & CEO, and Christopher Vance, SBA's Director of Development and organizer of this event.

*Hal Pote Memorial Lecture (given in memory of the late Hal Pote, who founded the Spina Bifida Foundation in 1987 and passed away in 2007)

• Father-son published author team, Scott T. Price and Pat Price, shared lessons about the innate goodness of human nature while traveling cross-country, interviewing everyday people for their book, Looking for Goodwill. These two were among the most inspiring people I met during World Congress. There doesn’t seem to be an ounce of negativity in them, and you can tell by listening to their stories that they consciously seek out the best in everyone they come across. Scott and Pat traveled almost an entire year, visiting each state, and searching for the best that America had to offer.

• Scott and Pat shared anecdotes from their book about how they interviewed strangers at random about the good things they have done. Each stranger they came across was handed $10 and they asked him/her to do something “good” with it. The gentlemen also read aloud to us letters they have received so far from the strangers telling them what they did with the money. Their responses show that many of them made life-changing impacts on other strangers.

• This father-son initiative to interview strangers across the country, and inspire them to do good for others, truly inspired me in a very “Pay It Forward” fashion. Pat and Scott are a remarkable example of how people both inside and outside of the spina bifida community are all capable of effecting positive change.

© 2012, Laurita. All rights reserved.

I’m very proud, humbled and thrilled to announce that I have been chosen by Britax USA for their Hispanic Digital and Social Media Outreach! This opportunity was made possible by my blogger friend, Joscelyn Ramos Campbell of Mami Innovative Media.

With its line of specialized seats for children with special needs (SnugSeat, Inc.), Britax proves itself to be an inclusive brand.

Through this partnership, several other selected Latina bloggers and I will be able to attend exclusive events, host parties on Twitter, reviewing products and hosting giveaways, plus other opportunities that I’m beginning to learn about. (*insert squeals here*)

Let me share a little about Britax and what they stand for.

© 2012, Laurita. All rights reserved.

I didn’t really have too many doubts about the kind of person I am. I did, however have a lot of doubts as far as who I am when my mother is not around to rely on. I haven’t had the typical upbringing you might imagine– living at home until age 18, then moving out as soon as I started college. I’ve never really traveled on my own yet, and so even traveling to Las Vegas for the first time with just Papi and not Mami was a big deal for me.

It was also my very first “business trip,” as I was sponsored by VitaPath Genetics, the company that hired me to do their Spanish social media for the Spina Bifida Genetics Research Project.

Soon I found out that I don’t give myself enough credit.

During the 5-hour-long flight, I saw greater topography than I could ever expect to see in the Southeast part of the U.S.!

As I flew over the vast, Southwest American landscape (on a Southwest Airlines plane, no less!), I couldn’t help but think of Kelly Clarkson’s song “Breakaway,” and how fitting it seemed for a girl traveling across the country, uncertain of what might wait for her on the other end.

From boarding the plane in Orlando, to arriving in Las Vegas to landing back home in Orlando, I made sure Mami got a full update on what I was up to! (It’s only fair. )

When I posted these on Facebook, Mami asked if I was visiting Mars. Such is the landscape. =P

Upon landing, I couldn’t wait to catch a bus and get to our hotel! We had been up really early, And we gained three hours on our trip, so I wanted to rest up and make the most of that precious time. On the way there, though, I found a few distractions.

My first glimpse of the Cosmopolitan Hotel where we stayed!

Bored while in line for the hotel check-in. It is not unlike an airport baggage check-in counter! Fortunately at the Cosmopolitan, there's always something to see.

The lobby was interesting enough, but we were anxious to see where our room was located. As they say in real estate– location, location, location! And truth be told…we couldn’t have picked better real estate ourselves…

Tempting to stay in bed all day...

And the view wasn’t bad either…

This was a STANDARD bedroom, 'kay? With views of the Paris Hotel and the Bellagio.

I can’t thank the staff of the Cosmopolitan Hotel enough for doing everything possible to make us feel like royalty!

Of course, one of the most exciting aspects of this trip was to meet my brand-new co-workers from VitaPath. I’ll admit, I was anxious about meeting them in person so soon, as I work from a “remote office” (wherever I have my laptop!). But my worries dissipated when I finally met them.

With Courtney Beyer and Dennis Gilbert, Study Coordinator and Founder/CEO for VitaPath Genetics, respectively.

One of the most amazing aspects of meeting and connecting with the VitaPath team was being able to share about life with spina bifida from my personal perspective. Before I met them, and in fact, before I met all of the research scientists I got to “hang out” with at World Congress, I would never have anticipated the compassion that these researchers have for people living with a chronic condition.

It was a great lesson for someone on my end who is so used to writing about politicians, scientists and other professionals with a very ambiguous, unclear view of who they truly are. These are not just human geneticists.

They’re humans. And they seemed just as excited as I was to understand other aspects of the human experience.

Please don’t forget to watch the video below! It is the latest (edited) version of my interview with the team from the SB Genetics Research Study.

Another incredible part of the conference was meeting other adults with spina bifida. I’m talking doctors, lawyers, and motivational speakers!

With Douglas Sorocco, Past Chairman of the Spina Bifida Association and attorney.

Douglas Sorocco and I have been friends on Facebook and have followed each other on Twitter for quite some time.  He has spina bifida, and has been very involved with the SBA for many years. Since we had Tweeted each other a couple of times, it was easy to talk to him and get to know each other.

It was very encouraging to meet not only a person with spina bifida who is a lawyer, but who also has a family of his own. I realized over and over at World Congress that there are many high achievers among us in the spina bifida community, and many people who simply strive to attain what others have– a decent job, a spouse, and children.

With Andrea Hennig, who is interning in Chicago for the SBA. What a fabulous person!

(The above photo was taken from a distance with my iPhone. I’m sorry.

Andrea Hennig is only a year older than me, and is already taking the spina bifida community by storm! She has spina bifida occulta, which is considered a “mild” form of spina bifida that often goes undiagnosed for years. However, Andrea also has Klippel-Feil Syndrome, a rare disorder characterized by the fusion of any two of the seven cervical vertebrae.

I had met and chatted with her mom, Lisa Raman, who is the director of the National Resource Center for SBA. We hit it off immediately, and talked for quite a while. I didn’t meet her daughter, Andrea, until the last day of the conference, but I felt an instant connection. Being so young (not even in our thirties!), it can often be challenging to find other young, like-minded people who want to make a difference and spread awareness about a cause. Talking with Andrea, it seemed like we shared the same frustrations.

With Pat and Scott Price, who delivered an inspiring closing keynote.

Finally, before I close out the second installment of my World Congress trip recap, I have to give a very special shout-out to father-son tag team Scott and Pat Price. Scott is a lawyer (general counsel to the Eller & Olsen Stone Company), and Pat, his son, is a graduate of Lipscomb University who has spina bifida.

In July 2003, the pair embarked on a remarkable journey– they traveled to every single state in the U.S. (with frequent return trips home to Nashville) and interviewed strangers, in search of kindheartedness. They gave each stranger they met along the way $10, and asked them to do something good with it.

Years later, father and son still get E-mails from these strangers, who tell them what they did with the cash. Many in turn used the money to help out complete strangers who were in difficult circumstances.

The Prices have turned their journey, the resulting experiences, and the letters into a book titled Looking for Goodwill. (It is available for purchase here.)

Indeed, after only speaking a few minutes with the Price gentlemen, I already felt a good deal more optimistic about human nature. The conversation we had right after the conference concluded stands out in my mind. Papi had dropped by to meet me, and I introduced them. Within minutes, they were telling us about a man in Puerto Rico (when they went on vacation) who went to significant lengths to return a lost wallet! I couldn’t help but grin with satisfaction at their anecdote.

I will be going into detail in the next post about the specific details on the medical research presented at the World Congress on Spina Bifida. So, there’s at least one other post coming on the subject of my trip.

I may never write a book about this, or any other, experience. But in a way, I think I left for Las Vegas in search of goodwill, too. I was eager to find out if true goodness could come from a conference held smack dab in the middle of “Sin City.”

My research findings conclude that, yes, goodness can come from Vegas, too.

© 2012, Laurita. All rights reserved.

Here at the Second World Congress on Spina Bifida (guess where the first one was held?), there are networking opportunities left and right. Unless you are chilling in your hotel room, if you are on the third floor of the Cosmopolitan Hotel, chances are, you are talking to someone fascinating!

After the Opening Reception took place on Sunday evening, yesterday (Monday) was the first full day of the conference. I attended a session on genetics and spina bifida, but left about 20 minutes after my head began spinning! (Sorry, fellow colleagues at SB Genetics. I’ll try to read a few research papers and learn the language so I can understand it better!)

Later, I listened to several researchers discuss psychosocial issues in people with spina bifida. I was particularly interested in attending this talk, since in the last few years, I’ve become both intrigued and concerned with the high incidence of clinical depression in young adults with spina bifida.

At the end of the seminar, they opened the floor for questions, and I asked Dr. Mark E. Swanson, Senior Medical Advisor to the CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) if he thought there might be a possibility in the future that mental health would be included in the team of specialists that typically treat people with spina bifida. I compared it to early intervention strategies for children with autism. Although he wasn’t exactly sure how to answer that question, he definitely emphasized the critical need for it now.

This is an issue that I only began considering as a critical component to the interdisciplinary approach to treating patients with spina bifida in recent years, but as I’ve written extensively here on Holdin’ Out, it’s been a big part of my life for many years.

Since I’m still in Las Vegas, and “as we speak,” I’m leaving in a few minutes to catch a show with Papi, who has been an awesome companion this week, I will leave you all for now with a candid interview I did yesterday with the SB Genetics team shortly before they all left me! :’(

I’m confident, however, that I will be seeing them all again soon, whether in their headquarters in California, or at another conference.

So, without further ado…

And there you have it– my newfound co-workers in their own words! Isn’t their work amazing? I hope to inform you all a lot more as I learn more about the study myself. And maybe someday, you might get a behind-the scenes look at what they do! Stay tuned– and be on the lookout for a full recap when I return to Orlando!

Love,

Laura ♥

© 2012, Laurita. All rights reserved.

This month, I started a new job. Yes, I have a job! I’m proud, excited and happy to share this news with you all. A couple of months ago, I was contacted by Courtney Beyer, the study coordinator for the SB Genetics study. The study is a project of VitaPath Genetics, a medical research company.

SB Genetics is conducting a study to analyze genetic differences between mothers of children with spina bifida and mothers of children who don’t have spina bifida. What they hope this will eventually lead to is a test that will determine a woman’s predisposition to having a child with spina bifida, so that she can receive proper prenatal intervention.

You all know me. While I respect and encourage folic acid intake as a way of preventing spina bifida, I haven’t exactly jumped on board the prevention bandwagon, because I feel that the “prevention” mentality can often lead to the “elimination” mentality if folic acid doesn’t work.

That is so not the case, however, with SB Genetics. In fact, they contacted me after following my blog and following me on Twitter for a while. They offered me a position as Spanish social media consultant! What I’ll be doing is using different social networks– Facebook, Twitter, and eventually, Ning– to curate a community of people who are participating in the study. This includes moms of kids with spina bifida, and teens and adults with spina bifida, as well. That means that, in a big way, the SB Genetics team is committed to listening to the concerns of the existing spina bifida community– all while gearing up to help future generations.

This past week, while still getting acquainted with my new position and responsibilities, I was invited by VitaPath to join them at the Second World Congress on Spina Bifida, to take place in– you guessed it!– Sin City itself. (Okay, so I doubt I’ll be doing too much “sinning” while on the job. There are also many seminars I can’t wait to attend.)

So, while chances are I won’t be hitting the slot machines or going to Cirque du Soleil, I’m guaranteed to meet a lot of interesting, dynamic people in the spina bifida community– including medical and health specialists.

I know I’ll do whatever I can to promote the mission of Holdin’ Out for a Hero– to keep promoting awareness of spina bifida, especially for those of us who are already “here.”

I’ve also officially launched a new site where I hope to update everyone– friends, followers, professionals, companies and organizations interested in working with me– on what I’m up to. Please head on over to check out LauraTellado.com! And do comment and let me know what you all think.

I’m very, very thrilled to have finally set it up, after months, no– years of planning, with the help of my wonderful friend Alyson Flynn. (Alyson, I owe you a very big translation job– anytime!) Sólo di cuando. (Just say when.)

A more confident, self-assured and happier Laura will be leaving home behind for a few days and visiting the land of “anything goes.”

In the meantime, I’ve got to finish packing. How will I ever get to sleep!? I know. I’ll count Elvis impersonators.

Laura has left the building…

Laurita ♥

© 2012, Laurita. All rights reserved.