Dreamsickle Kids Foundation,Inc

I am applying for the elevate prize to be able to further expand on our organizations work in the Sickle Cell and Rare Disease community of Nevada. As the first organization aimed to support SCD in Nevada  our task is daunting.During the pandemic with the Sickle Cell and entire community of those with Rare Diseases being a vulnerable population it was important for us to be there to support them which we did. I know if we had the financial resources we could have helped even more people in various ways. Having a daughter with Sickle Cell Disease (SCD) this cause is personal and I want to help everyone in NV with SCD.In 2014 a hospital in NV killed a woman overdosing her on Toradol.They were found to be medically negligent to the tune of 38 million for her family. But that won’t bring her back, a daughter is w/o a mom.  I want to make sure that we do our part so no other family would have that experience , so no other SCD patient would be in the hospital and think they had nobody could fight for them. 

I am a mother of two with my youngest having SCD. Our family relocated to NV from CA due to  the possible expenses associated with caring for an SCD patient. After working for a large Insurance company in CA I landed a job at another large insurance company and was the first to bring SCD to their attention. After a year my child became very sick which meant me missing work, though I had FMLA, due to a technicality w/ paperwork I was fired in 2018. Thus, I decided to focus on building a nonprofit to support those in NV with SCD so that I would be able to be home with my child. In 2018 the first SCD organization was founded by me, 2019 NV passed their first SCD bill AB254, 2020 the first SCD comprehensive clinic opened in the state for children and adults . I have to say much of this progress is due to our organizations advocacy on behalf of the SCD community. I am now a certified community health worker, a notary public , and still licensed in insurance all to continue to help the rare diseases community of NV. 

In Nevada, it is estimated 1000 individuals live with SCD. The distribution of resources reflects that as little to no support was available to people with SCD in 2018. Since 2018, through Dreamsickle Kids, the first Sickle Cell Disease nonprofit in the state, we have been able to advocate for long-term change for the SCD community in Nevada. We now have a SCD bill as of 2019, A SCD clinic for children and adults as of 2020, and soon a SCD State Action Plan to  establish a standard of care for doctors to follow when they encounter a patient with SCD in the state.  Using social media to achieve our mission to #MakeSickleCellPopular, we have change the way Nevada views and supports those with SCD. We address the health disparities experienced by SCD patients one due to having a rare disease and the other due simply to their race and the bias the healthcare system has towards black people even today. The goal is to make SCD as common as any other ailment that people speak about and support. So that children do not go through life being ashamed and become adults viewed as drug addicts by the healthcare system.

Using social media , we have been able to increase our visibility and leverage that into opportunities to further spread awareness. We never stop speaking on SCD we have also been fortunate to receive press that allows us to further increase awareness. Our hashtag #MakeSickleCellPopular has gained much popularity as we are asking that this disease becomes just as common as other ones you can think of so that education, awareness, and financial support for medical advances for SCD can increase. A disease that is commonly taboo in the communities it affects and with the colors does not make for a feel good mood. We have taken and brightened up to show that there is much to be happy for much light in having a chronic disease with no cure. Though the disease most commonly affects African Americans, we make it a point to highlight the fact that every race can be affected with this illness. We have no qualms highlighting the fact that serious health disparities which include medical racial bias

We  came and stepped in to meet a need. To ensure there was equity of care for people in NV with SCD. To achieve that we reached out to local legislation. Developed relationships with blood and bone marrow organizations to encourage diversity in donations to benefit people with SCD. We got with a politician who already had some interest in creating a SCD bill and we followed her though to completion providing the necessary information and medical connections to ensure the language was such that would benefit the community and be likely to pass. We work directly with the top SCD hematologist in the state to ensure that patients get equitable medical care and any regulations that come about for SCD in NV have expert medical input from people who treat the community.