Latino(a)s have the highest incidence of Spina Bifida in the US and we must help Laurita fight it

Latino(a)s have the highest incidence of Spina Bifida in the US and we must help Laurita fight it

Two Summers ago I met Laurita.  She applied to the LATISM BlogHer Scholarship and as part of the selection process I visited her inspiring blog: HoldinOutforaHero.org.  There was an unanimous reaction by all the LATISM Board members.  Laurita is exactly the type of blogger our community needs.  She is advocating for a cause with passion, charm and espiritud de lucha!  Of course, she was the number one on our list of scholarship recipients.  Then when I met Laurita, my level of admiration towards her grew exponentially more and more.

Her participation at the conference made a huge difference for all of us there.  She taught me so many lessons.  Friendship, gratitude, persistence, dream big, fight hard are just a few of those things I’ve been learning from Laurita in the last years.  I am humbled to be associated with such a strong Mujer (with big M) and even more so to have Laurita lead the Central Florida LATISM Chapter as the Director.

I hope each one of you join us today.  Write a post to show the world that Latinos are Unidos in one voice to fight for Spina Bifida with Laurita.   Here you will find all the information you need about it.  Our goal is to write 100 blog posts.  I’m pretty sure you can help.  Hey, you don’t need to be a Latino(a) to join.  Everyone with an audience is more than welcomed!

I would like to thank Angélica Pérez of NewLatina.net for organizing this Blog Carnival.  When she sent the idea around an email (at 2 in the morning), I felt so inspired by her leadership.  The way Angélica brought everyone together felt like a fresh beginning of collaboration.  She doesn’t know what that means to me.  But mamma mia! it means the world.  Thank you mi hermana.
October is Spina Bifida Awareness Month and to help increase awareness about Spina Bifida, we’re joining Laurita Tellado of HoldinOutforaHero.org and Angélica Pérez of NewLatina.net in a Blog Carnival Fundraiser to raise funds for Laurita’s Walk-n-Roll event on October 29th. Through Laurita’s

Here are some facts about Spina Bifida:

  • Each day in the U.S., an average of eight families welcome a child with spina bifida into the world. Annually, an estimated 1,500 infants are born with spina bifida each year in the U.S.
  • According to the Spina Bifida Association of America, “spina bifida remains the most commonly occurring birth defect in this country.” Just how common is it overall? PubMed Health, the Web site of the U.S. National Library of Medicine, reported in March of this year: “Myelomeningocele [the most severe form of spina bifida] may affect as many as 1 out of every 800 infants.”
  • Spina bifida is more common than muscular dystrophy, multiple sclerosis, and cystic fibrosis combined.
  • Latinos have the highest incidence of spina bifida out of all the ethnic groups.
  • Ireland is the country with the highest incidence of spina bifida in the world.
  • About 50 percent of babies with spina bifida are selectively aborted after being diagnosed with spina bifida.
  • Doctors recommend that every woman of childbearing age consume 400 micrograms of folic acid daily to help prevent neural tube defects like spina bifida up to 70 percent of the time. In spite of this, there are currently an estimated 166,000people in the U.S. living with spina bifida– up from just 76,000 just last year.
  • About 90 percent of people with spina bifida are also born with hydrocephalus. Many need a shunt inserted near the brain to drain the excess cerebrospinal fluid– and many requiremultiple shunt replacements during their lives.
  • Other very common secondary conditions include bladder and bowel incontinence, as well as frequent urinary tract infections.
  • After the onset of puberty, young people with spina bifida are more prone to clinical depression than most people. Researchers think this may be due in part to social isolation.

Let’s hear it from Laurita now:

I was born with spina bifida nearly two and a half decades ago. The diagnosis came as a total shock to my family, along with an entire set of secondary complications. I was also born with hydrocephalus, or “water on the brain.” During the first ten years of my life, it seemed I was in the hospital every other week with a bladder infection or shunt malfunction. I’d be lying if I said this wasn’t really scary at times.

But then, at age ten, I discovered a fantastic way to defeat my worst fears– knowledge. I vowed I would educate myself and read up on the condition that, up until that point, seemed to be taking over my life. Much like a child who imagines a ghost is in his closet, grabs a flashlight and realizes it’s only an old coat, I had come to the realization that, when you take the time to learn about something, no matter how terrifying it may seem at first, everything is less scary in the light of knowledge.

As a 21-year member of the Spina Bifida Association of Central Florida, I’m doing my part to shed light on this condition by raising money for the Walk-N-Roll for Spina Bifida. When my parents and I moved from Puerto Rico to Orlando, Florida in search of better educational and healthcare opportunities for me in 1990, we found a support system away from our family and homeland in joining the SBACFL. My personal search for a public spokesperson for the spina bifida cause, as well as my work as a current member of the SBACFL board of directors, have helped me find my true purpose– galvanizing as many people as possible to support the spina bifida community. By Laura Tellado

Being able to share this information with all of you today is without a doubt the most empowering and inspiring aspect of my life. I’d love nothing more than to give you that very sense of empowerment. Please publish this post on your own Web site(s), and feel free to add your own personal intro that will make it relevant to your blog followers. As many people as I’ve managed to rally in support of this cause, you have an advantage that I don’t–your audience. So, please share this information with everyone you come into contact with.

Below is a video that explains just why the Spina Bifida Association of Central Florida means so much to me, and why I’m participating in the Walk-N-Roll.

[youtube http://www.youtube.com/watch?v=yIpzk_1ICX4]

I will be raising money online for Team Holdin’ Out for a Hero until October 29th, when we have our Walk-N-Roll event. Donations can be as small as $5 or as large as $50,000. (Yes, I do like the $50,000 better!) Every cent counts! Every cent of every dollar will go towards supporting families affected by spina bifida in 22 counties in and around the Central Florida region and supporting educational and awareness efforts.

Yes, to the new parent, or even to the already-grown individual, spina bifida can seem like a scary thing to deal with. But there’s a power in numbers and a strength in awareness– a strength that gives us the courage to open the closet, shine the light in the ghost’s face, and reduce it to nothing but an old coat.

Thank you for helping me conquer my biggest fear– ignorance of spina bifida.

~ Laurita Tellado, HoldinOutforaHero.org

Moved? Ok! so here’s how you can help:

  • Upload the pre-written post on October 25th, 2011 and leave your link in the comments below so we can add it to the carnival post for this fundraiser.
  • Write your own unique intro to go with the post and share your experience or why this cause matters to you.
  • Spread the word on Facebook and Twitter asking others to donate and join in by adding a post to their own blogs.
  • Donate to Laurita’s Walk-n-Roll fundraiser here: Laurita’s Chipin Page. As little as $5 can make a big impact for the cause.
  • Add the blog carnival badge and grab code to your blog and help promote the event.

Preferred Post Title: “Knowledge Conquers Fear: October is Spina Bifida Awareness Month”

Download the .doc version of the post here [http://newlatina.net/wp-content/uploads/2011/10/Walk-n-RollFundraiserPost.doc

- ### -

GRAB A BUTTON TO SHOW YOUR SUPPORT & SPREAD THE WORD:

160×150 badge & grab code

250×230 badge & grab code

 

Leave a Reply