The Laurita Spina Bifida Project (“The LSB Project")

Our non-profit organization is as “grassroots” as it gets. My family runs it from our literal kitchen table. We don’t raise a lot of funds, but the money we do manage to raise always supports our mission. Only a very small percentage of funds goes toward operation costs-- maintaining our non-profit status and filing our annual reports with the state of Florida. Because we are 100% volunteer-based, we are able to use whatever funds we have to support people with spina bifida and hydrocephalus in dire need in developing countries. But, we are constantly in a “hand-to-mouth” situation. Having access to more funds would mean being able to reach different parts of the globe and alleviate more urgent needs of the global community we serve that are not addressed by other larger organizations. 

I am a 34-year-old woman with spina bifida (SB). Born in Puerto Rico, and living in Orlando, I’ve had 22 surgeries and countless hospitalizations due to SB and hydrocephalus. Add to that my frustration at having to constantly explain SB to others, plus the bullying I experienced, and it's understandable why life groomed me to become an activist. I was discouraged by how little-known SB was. I realized the key to acceptance of people with SB is awareness. I was 10 years old when I began writing letters to celebrities, asking them to “adopt” the SB cause to raise much-needed awareness. While my crusade had little impact, I took my cause online with my blog, where I reached out to celebrities while chronicling my own experiences. Many individuals with SB and parents contacted me, thanking me for sharing my story because many didn’t know others living with SB, and many (especially in developing countries) hadn't "met" an adult living fully with SB. In developed countries, the life expectancy for people with SB is higher. In developing countries, that lifespan is still tragically short. It reaffirmed my purpose in realizing that I could connect those in dire need to life-saving resources. 

In developing countries, spina bifida and hydrocephalus are often viewed as a “curse.” This social stigma ostracizes these children and keeps them from receiving vital care and services. Often, they don’t reach adulthood. An estimated 500,000 around the world have spina bifida, but it’s virtually impossible to get exact numbers, especially in Africa and Latin America.

 Founded by a young adult with spina bifida, The LSB Project is family-run and entirely volunteer-based. As a result, we can allocate all of our funds raised to projects in communities in dire need.  

Our approach to addressing these problems is three-pronged: 

1. Raising funds and sending them to carefully-vetted NGOs that work on the ground serving this community 

2. Connecting with global organizations that have more resources and are better equipped to help 

3. Serving as liaisons for the Hispanic/Spanish-speaking community in connecting them to organizations and resources

Additionally, we have consulted pro-bono for various entities, including Orange County Convention Center in Orlando and the City of Paris, advising on accessibility and potential improvements.

The Laurita Spina Bifida Project is the first of its kind because, to my knowledge, there has never been a non-profit organization serving the SB community that was founded by an individual living with SB. Traditionally, organizations serving this population have been founded and run by parents, caregivers, and/or healthcare providers, and other professionals that have no personal connection to SB, but never by the individuals living with the condition firsthand. 

We haven’t had the opportunity to travel to the countries we’ve served because we send every cent raised for the projects we sponsor. Even sending $1,000 goes a long way to obtain vital medical and mobility equipment in developing countries. We have had a greater global impact with our very limited resources, and we have the potential to do so much more, especially if we were to find corporate sponsors or grants. 

Although we are a small organization with very limited resources, we leverage the power of connections by teaming up with larger, global organizations, and we make them aware of the needs that we work to address. By getting other larger organizations involved that have more capital and that are working in these communities in need, we can focus on using our limited funds in their entirety to help people in developing communities. Since there are perpetual dire needs in different areas of the globe, our main role is to call attention to the ones that might fall through the cracks, by reaching out directly to organizations that are better positioned to help, whether it be financially or through on-the-ground work. Both locally and globally, The LSB Project has been able to amplify its impact by leveraging these connections, as well as pointing larger organizations in the direction of communities in need that are not already on their radar.