Category Archives: spina bifida

SheCon at Miami, Part Deux (I couldn’t make this up if I tried!)

Given several seemingly random events in my life, it has always boggled my mind how a journey isn’t over until God says it is. Today, as my always-efficient parents went into a packing frenzy, I selfishly sat in a depressed daze, pitying that SheCon had ended.

Little did I know that my journey was just beginning.

Allow me to backtrack now for a bit, so I can share with you some events that occurred yesterday (Saturday).

After returning to our hotel after a morning spent pitching the spina bifida cause to attendees at the expo hall, I checked Twitter to find out what was going on at the conference, so as not to miss out on anything. (I searched the “#shecon” hashtag.) I read a Tweet from a fellow blogger, saying that Lindsay Lohan was doing a photo shoot at the Raleigh Hotel in South Beach. I turned to my parents.

“Where’s the Raleigh Hotel?”

“It’s the one right next to us!” said Papi.

Before he could finish his sentence, Mami was already at our window (we had a corner room on the ninth floor), and she noticed some people setting up for a photo shoot.

Mami asked if a girl with dark hair wearing a straw hat was Lindsay. I turned on my Sony Cybershot and used the zoom to get a closer look. It certainly looked like her.

Then, a moment later, I realized it was her younger sister, Ali. I realized this only because Lindsay herself had come out of the penthouse suite, and had walked onto the terrace wearing a beautiful billowy, pastel-print dress, over what looked to be a swimming suit.

I started snapping away hastily, but apparently was able to get a few good shots of her, over a span of maybe 15 minutes, before Lindsay went back inside her suite.

The irony had not yet hit me that I was shooting photos of a photo shoot! It was such a beautiful scene, with the ocean in the background, very reminiscent of a scene in “Titanic” except with a sea goddess.

In my haste, I Tweeted a couple of the photos. It didn’t take ten minutes for me to get a message from a photography agency wanting to buy the photos from me!

As it happened, the paparazzi had been surrounding her hotel, trying to get a good shot of Lindsay, but they didn’t have a good vantage point.

What’s more, after such a long battle with addictions and the negativity surrounding her, it was refreshing to see Lindsay actively trying to get back on track.

It was beyond surreal to me that I was being contacted by the paparazzi for photos that I took from a privileged point of view, when I just happened to be in the right place at the right time (as usual when these things happen to me)!

In order to sell the photos, one of the conditions was that I remove these photos from any and all social media sites. Damn it. Oh, well. You’ll take my word for it…right?

This morning, I met with the Paparazzo (I won’t name him just now!) to share the photos and sign my contract. He was actually very impressed with the quality of the photos! They appeared as if I hadn’t been shooting from behind a window.

I spoke to him for a while about my cause (of course, I had to take advantage of this golden opportunity!). Since he has developed good relationships with several celebrities, he even suggested I draft a letter to some of them, and he would deliver them in person! Whoa.

After my business meeting with the photographer (who was convinced that LiLo had checked out from the Raleigh Hotel, since she hadn’t been spotted since then), I headed over to the Expo Hall to chat it up with a few conference attendees. I shared my mission with a very receptive group of people. All from very different walks of social media life, they offered suggestions and pledged to support Holdin’ Out in whatever ways possible. I left with a very positive outlook.

Back at the hotel, we checked out and needed to find a place to have lunch. One of the Shelborne’s very attentive staff members suggested having brunch at the Raleigh, which is a trendy spot in Miami. So we took his suggestion, and treated ourselves to a leisurely brunch (and my long-anticipated mojito!), served out on a terrace by the pool.

As we were finishing up our brunch (did you see that coming?), Ali Lohan strutted out of the lobby and out to the pool area. We gawked. Hadn’t they checked out? Ah, well. It’s not like I would actually approach her…right?

So, we took a stroll around the hotel patio, and I stood near the pool as I went over all the possible scenarios in my mind. And then– she passed right in front of us. Lindsay. This would be my moment of truth. I decided it would be better to be blown off by Lindsay Lohan than to not try at all!

I made my move before she got comfortable in a lounge chair. A timid voice that seemed to come from inside me spoke, and said, “Excuse me, are you Lindsay?”

The blonde girl in a loose black top, jean shorts and gladiator sandals replied, “Yeah.”

“I’m Laura,” I said, “Would you mind very much if I took a picture with you?”

Lindsay looked around furtively and said in a husky voice, “Yeah, sure.” So we took a quick shot.

With Lindsay. She was a sweetheart!

Then I said, “Thanks, real quick: I’m promoting awareness of spina bifida on my blog, because it’s so common, and yet it doesn’t get any media attention.”

She almost cut my off to say, “I’ve heard of it.”

So, this was it. “Will you please check it out?”

“Yeah, I’ll check it out.”

“Thank you so much! God Bless you!” I said.

I turned around and left with a sigh of abject satisfaction and glee.

Later that day, as we began our long drive home to Orlando, I got a series of strange phone calls. About three different numbers called my cell phone and it somehow got cut off or they hung up. I shrugged it off. Then, I got a text from Paparazzi, saying something about Lindsay Tweeting my blog. I searched like a maniac for her genuine Twitter handle, and found this Tweet:

Holy moly!!

I clicked on the link, which led to…a photo of my business card! The pic that she took was of the side with my E-mail address, my Twitter username, my Facebook page, and…my phone number! Hence the strange calls. LOL.

Hey, all for The Cause’s sake.

Lindsay is a person who I probably wouldn’t have imagined reaching out to, not because she doesn’t do charity, which I know she does; but rather because of her complicated personal life. But whatever led us to have lunch at the Raleigh today, it resulted in a successful contact. She Tweeted my info. More people are following me on Twitter now, and have friended me on Facebook! Some commented on my blog.

I’ve profiled on this blog the entire gamut of celebrities and politicians. I’ve sent the letters. Some of them have led me by a polite response to believe they would actually help. Others have been far too involved in their personal affairs to extend even that courtesy. So even if Lindsay didn’t need to get up from her lounge chair to do what she did today, the fact that she consciously chose to do that, means everything to me. And that makes her my hero.

And the fact that it was Lindsay Lohan who did this, matters to everyone else.

I no doubt wish her the absolute best in her life, and will be praying for her to make an awesome comeback! That’s why I handed over the photos– because they represent a strong, resilient, and very beautiful Lindsay, who believes in herself.

At least, that’s the one I’ll see every time I think back to these remarkable events.

Love,

Laurita ♥

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Day 311- chART charity art magazine

It seems today is proving to be somewhat of a productive day for me. I started it off having breakfast and studying for class, and then proceeded to E-mail today’s contact person.

I’ve decided to zero-in on chART, a publication that uses a passion for art as a vehicle for raising funds and awareness for numerous charitable endeavors. The magazine is published locally, in Winter Park, Florida. A few minutes ago, I E-mailed Casey Swann, the magazine’s publisher, and asked her to consider including an article about spina bifida awareness in the publication.

chART's classy, multidisciplinary approach to giving back is an artform in itself.

In looking at the overall big picture, it’s important to me not to lose focus on the local communities that are all about getting involved in worthy causes.

Initially, I was inspired to reach out to an art publication or non-profit when I learned that today would have been Frida Kahlo’s 103rd birthday! Kahlo was a famous Mexican painter who died 1954 after living with many medical complications, including contracting polio at age six.

Hailed as "one of the most influential painters of the middle twentieth century, it is widely debated whether or not Frida had spina bifida.

Interestingly, it has been widely speculated that Kahlo also had spina bifida, although nothing has been proven. So, in honor of this late hero who might have had spina bifida, I wanted to share Google’s lovely depiction of Frida as is available today on the search-engine.

Have a beautiful day, everyone. Remember to please E-mail me at: laurita.tellado@gmail.com with any and all questions or suggestions!

Love,

Laurita ♥

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Day 300- Gloria Campos

Campos, one of NAHJ's 2010 inductees into their Hall of Fame, avidly supports adoption agencies and organizations catering to foster children.

If there’s one thing I’ve learned at the 2010 NAHJ Convention and Career Expo, it’s this: there is no shortage of “heroes” in this vast organization.

There’s also no shortage of passion for giving back. As with many so-called “minority” groups, Hispanics aren’t strangers to the hardships of fitting in and feeling accepted and embraced. So, many of us choose to stand out, for better or for worse.

Gloria Campos is one woman who stands out for the better– and for the greater good, too. The WFAA-TV news anchor decided to become a journalist when she was in the third grade, after the assassination of President John F. Kennedy.

Her precocious interest in communications paid off, as she has become one of the most respected journalists in Texas, and was named “one of the states most influential Hispanic women in 1996 by Texas Hispanic magazine.”

Of her status as a “role model” for fellow Hispanic women, she has said, “It’s a big responsibility I take very seriously.”

That is particularly evident, given her hard advocacy work for the Wednesday’s Child Benefit Corporation, which provides assistance and emotional support to children. According to the site, 1 out of every 207 children in North Texas is a foster child, and Campos has striven to shed light on this issue through her volunteerism and by being an ambassador for the cause.

Campos has also supported events for the Dave Thomas Foundation for Adoption, and she has also said, “My interests revolve around education and women and family issues.”

I cannot think of a better candidate to receive the prestigious honor of being inducted into the National Association of Hispanic Journalists Hall of Fame at our gala tonight. But, maybe I can think of someone who deserves it just as much! Stick around for a new entry coming right up.

Who knows? Maybe her next cause will be spina bifida awareness.

Love,
Laurita

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Day 256- Rep. Tammy Baldwin (D, Wisconsin)

Baldwin staunchly supports stem cell research, and authored a groundbreaking piece of legislation, advancing paralysis research.

Behold: This is the last member of the Congressional Spina Bifida Caucus that I will be profiling– for now, at least. If you’re as politically illiterate as I once was, say, before the last presidential election, then you will probably join me in breathing a sigh of relief.

That being said, I am not close to being through with Washington. I have a lot to say to these politicians– a lot to ask of them, and also a lot to thank them for. But I do feel that it’s time to devote a little attention to other equally worthy heroes who are not in the political circuit. (Did I hear someone say “circus?”)

Yes, often, it is a circus. But everyone is passionate about something, and an individual’s passion is undoubtedly what triggers the idea of running for office in the first place.

Rep. Tammy Baldwin of Wisconsin is exactly the kind of person who ran for office to fight for what she believes in. She is a passionate advocate for civil rights for people with disabilities, and fully supports the Americans with Disabilities Act.

She’s also contributed, and in no small part, to advancing research into paralysis and its potential treatments. On March 30, 2009, President Obama signed a piece of legislation Congresswoman Baldwin sponsored into law– the Christopher and Dana Reeve Paralysis Act.

Rep. Baldwin has been a leader in getting Congress to lift the ban on federal funding for embryonic stem cell research, as she recognizes the potential benefits it may have for people living and struggling with many disease and conditions, including paralysis.

She is a vocal activist for women’s rights and has spoken out against domestic violence through her backing of the Violence Against Women Act.

Congresswoman Baldwin is a member of the LGBT Equality Caucus, the Human Rights Caucus, and is on the Women’s Caucus, for which she serves as Vice Chair of the Health Care Task Force. She’s also a member of the National Organization for Women (NOW).

With all her astounding accomplishments thus far, it would be very easy to overlook the fact that she is “the first woman to serve in the U.S. House of Representatives from the state of Wisconsin”– and “the first, non-incumbent, openly gay person to serve in Congress.” Both are equally impressive achievements. Taken together in context, they make for a powerhouse woman! And boy, do I love profiling these powerhouses. I can’t wait to send her a letter! (I will be sending out the last batch of letters to Congress soon.)

Thank you all so much for putting up with my self-doubts about whether or not I could be a political reporter of sorts! Everyone has been truly supportive, and so far, no one has called me out saying that I should keep my day job– whatever that is. I really have enjoyed learning more about the political system, and delving deeply into what constitutes a typical workload for a member of Congress. It seems like a daunting job, to say the least, and I am very proud of all of the people who are smart enough and thick-skinned enough to take on the challenge in our name.

I realize now that the mild heat I have taken for my efforts with “Holdin’ Out for a Hero” is nothing compared to being constantly under fire while serving in public office. I have a new-found appreciation and respect for the men and women who are doing all the really hard work for us, and making a big difference in many areas.

There is one more lesson I have learned on this “sub-journey,” if you will (because it is only part of this bigger journey!). I used to see politics as very straightforward, and black-and-white. There was good or bad, there was no “average” politician. There was right or wrong. I now see that, on the vast spectrum from Conservatism to Liberalism, there are issues that many members of the same party will disagree on, and others that perhaps we could all agree on.

I hope you will notice that I have objectively criticized members of both parties for accepting such a cumbersome workload, instead of really focusing their efforts on two or three issues of great importance. My concern has always been, and will always be, that spina bifida is on the back-burner of the policy-making stove, when it is such a pressing issue in society that demands the attention and support of everyone.

Yes, I firmly believe that Congress members will initially choose two or three caucuses to be a part of because they are passionate about the issues that lie at the core of those committees. I’d say more than ten is far too much! And not having found a significant piece of the puzzle from any of our Congress members, it is my opinion that there is still very much to be desired in the area of making legislators care about the issues that genuinely affect all of us with spina bifida, and our families.

That, in and of itself, is the bottom line. We have to make them care.


Good Night, & Good Luck,

Laurita ♥

P.S. Please don’t take this to mean this is the end of “Holdin’ Out!” We’ve only just begun. Tune back in tomorrow– it seems I have some research to do.

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Day 246- Sen. Chris Dodd (D, Connecticut)

Dodd is a concerned and impassioned advocate for patients' rights.

It’s time for another new beginning here at “Holdin’ Out.” In light of the fact that the Spina Bifida Assocation recently published the 2010 roster for the Congressional Spina Bifida Caucus, I anticipate that I will still be focusing on a few more members of Congress.

One change I did not foresee is that I will be writing to a member of the Senate, and not just members of the House of Representatives. Surprise, surprise. Tonight we will be looking at Sen. Chris Dodd of Connecticut. Sen. Dodd is both Founder and Chair of the Senate After School Caucus. As a member of the Committee on Health, Education, Labor and Pensions, he is on the Subcommittee on Children and Families.

During the late 1960s, Sen. Dodd was a volunteer with the Peace Corps in the Dominican Republic. He’s also a staunch advocate for patient’s rights, and “has worked to support community health centers and initiatives aimed at child nutrition, autism, under-aged drinking prevention, maternal and child health, and infant mortality prevention.”

Sen. Dodd has additionally fought for the rights of the mentally ill, writing legislation that would protect them from abusive treatments and restraints in psychiatric hospitals.

That’s it for tonight. I’m sincerely looking forward to some new developments in the near future. I have a lot of hope and faith in our supporters, and I appreciate everything you guys do to help! Please keep sharing our Fan page on Facebook with everyone!

May God Bless you all,

Laurita 🙂

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Day 176- Dave Thomas Foundation for Adoption

I’m sure you can begin to see a new trend being born on my blog. I’ve been doing a little research to find out about different types of adoption, and also about adoption laws and requirements. If little Masha is to find a good family here in the U.S., I need to read up on the subject as thoroughly as possible to help give her a fighting chance!

Now I realize that children with special needs face many unique challenges when they are awaiting adoption. The facilities of orphanages, foster homes, and other housing provided are one issue. Depending on the country they are currently living in, awaiting adoption, yet another challenge might be overcoming stereotypes and the stigma that may often be associated with a “disability” (I always use quotes, old habits die hard!) in other countries.

To tell the truth, there is even a stigma associated with physical or mental challenges here in the U.S. I’ve been a victim of that many times. So, imagine living in a country with less resources, underdeveloped medical technologies, and limited supplemental income for people with disabilities. In the U.S., there are people who might manage to live comfortably, just with their social security or SSI. That’s not a luxury to be enjoyed in other places. In most countries, someone like me should be grateful for making it through the first year of life.

Since 1992, Wendy's has helped realize Dave Thomas' dream of providing hope-- and homes-- to children.

So, in case I’ve got your heads spinning, here are the points I’ve covered:

1) Orphaned or abandoned children in other countries (even “developed” countries) who have a physical challenge often don’t live in fully-accessible, medically-equipped housing.

2) There still exists a negative stigma in many countries about children who have a “disability,” and many are overlooked for adoption.

3) Children with physical challenges awaiting adoption seldom go out into the “real world.” Often they are kept inside and have very limited opportunities to engage in social contact with people other than their caretakers or other children in their orphanage.

No, none of this information is cited from an actual article or particular Web site. But a lot of it is gleaned from my recent communications with Elizabeth (“Lisa”), my new “ally” in helping Masha. She claims that several volunteers told her of their visit to such an orphanage with children with disabilities, and that these volunteers accompanied the children on an outing. According to them, she told me, there were five-year-olds in the group who were going out for the very first time.

That is a tragedy in itself, never mind medical care and personal attention.

Perhaps the reason why I am becoming so passionate about this, and why I am badgering the subject to death, is because I feel so ashamed that this is the first I’d heard of the conditions of orphans with disabilities in other countries. But, maybe I’m not alone. Maybe you were shocked, as well. That’s why we have to address it, and soon. I’d like to write to the Dave Thomas Foundation for Adoption (remember the late founder of Wendy’s restaurants?) and ask them, along with the ambassador of Russia to the U.S., to support us in helping save Masha from her uncertain fate.

According to the foundation’s Web site, their vision is that “every child will have a permanent home and a loving family.” We are shamefully far away from that goal, but I think that, with a little effort and a lot of compassion, we can help make a huge difference for many children.

In a 2005 study surveying the need for special school services by children adopted from Eastern Europe in the U.S., 435 children were assessed for different physical conditions, developmental delays, and psychiatric disorders. Of the children surveyed, 140 were found to have neurological impairments (47.8% of survey sample).

In fact, Dr. Dana Johnson, from the University of Minnesota, said, “Although it is not necessary that a child have medical or developmental disabilities to be eligible for international adoption from Russia, adopting parents should consider all children adopted internationally to be special needs. Adopting parents should expect developmental delays.”

So, that’s something to consider when thinking about adoption. One can’t choose their biological children (to the best of my knowledge!), but one can afford to be precise in their specifications about adopting a child. It kind of makes the entire system unfair for children like Masha, who must continue to wait.

Let’s make it worth the wait for her!

If you’re looking for more info on adoption of special needs children, a great Web site is http://www.rainbowkids.com. Also, http://www.adoption.com has some useful information on the subject, as well.

Remember to pray for and support our friends in Haiti by visiting http://www.cnn.com/impact.

I want to give a special shout-out tonight to Andrea and her daughter, Rowan. I’m praying for little Rowie’s health! I love you guys. 🙂

Love,

Laura ♥

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