Looking ahead, 2019 and Beyond; Dreamsickle Kids Foundation
By Georgene Glass
2018 was an amazing year for myself, and Dreamsickle Kids Foundation (DSK) , a foundation I started in Nevada for the people affected by sickle cell disease (SCD).
Sickle Cell Disease (SCD) is a hereditary severe form of anemia causing red blood cells (RBC) to be shaped like a “sickle” and make the otherwise flexible RBC rigid and difficult to pass through the blood vessels to carry oxygen. This can lead to inflammation in the body causing conditions like a pain crisis, stroke, infection, and/or even death. A normal RBC last up to 120 days but a sickled blood cell lasts between 10-20 days. This often leads to fatigue and dehydration for people with SCD among other complications.
100,000 Americans have SCD. 1 in 12 African-American babies are born with the Sickle Cell Trait (SCT), the precursor to a child being born with SCD. This illness primarily affects those of African descent the most, though Hispanics make up 10% of those affected by SCD. Contrary to popular belief, SCD is not a “black disease”. Those with SCD often come from tropical regions like the Mediterranean, South Pacific (Asia), and a few other countries where Malaria have the highest prevalence.
Sickle Cell funding and support pales in comparison to many diseases like cystic fibrosis, which affects about 30,000 people. Recently, the passing of The Sickle Cell Treatment Act S.2465 on December 18,2018 gives new hope to the Sickle Cell community that the disease will no longer continue to be over looked. This bill will allow for continued research to be done for SCD in effort to find a cure and to provide funding for community organizations geared to supporting SCD among other things.
DSK was created because as a mother with a child with SCD, I recognized after relocating to Nevada, there were little to no resources for people with SCD and the knowledge and awareness was almost non-existent. I did not want my child to have to grow up over explaining to her peers and even medical professionals what her disease is. I did not want her to hide her condition either, as some do with SCD because they feel it is easier than trying to explain to people who do not know or care to know about SCD.
In just a short time, DSK has begun to make a name for themselves as a leading Sickle Cell Foundation in Nevada. In 2018 our impact was made by:
Starting the first and only active Sickle Cell organization in Nevada
Hosting the 1st Sickle Cell walk in NV in 5 years, sponsored by Nevada Childhood Cancer Foundation (NCCF)
Getting 09/22 proclaimed Dreamsickle Kids Day in Nevada
Participating in 2018 Sickle Cell HBCU Tour to educate college students and faculty about SCD and SCT
Getting accepted into the 2019 Policymaking course led by the Nevada Governors Council on Developmental Disabilities
I took a leap of faith with pouring all of the extra time I have into DSK to be a voice for the Sickle Cell population of Nevada and all people with SCD. I have learned that in order to accomplish anything you have to have faith and get out of your comfort zone. I had been in the insurance industry, where I was sure I would stay forever. I had no nonprofit experience. I just knew I wanted to do something for my daughter, great niece, and now, for everyone with SCD to make their lives a little more bearable. From everything I researched about the disease to befriending people on social media with the disease, I knew they deserved to be heard and treated with the same compassion that this world treats anyone with an illness they did not ask for. It has hardly been the case for people affected with SCD - be it labeled and treated as drug addicts or ignored because their pain is perceived to be unreal. I knew I did not want my child to have to go through any of that if I could do anything about it.
I have encountered many challenges along the way trying to fund an organization with only my personal finances, which can be limited as an unemployed single mom of two. To this day, people in high places continuously ignore my emails and calls to collaborate. Many have declined to help but in contrast the support grows daily which motivates me to keep going. Before DSK, I had no idea what I was good at, or what kind of difference I would or could make in this world beyond giving my family the "American Dream". It took my daughters diagnosis plus three years, along with losing a job, to finally find my passion at now 35 years old. It’s never too late to follow your dreams and make a difference.
“The best way to not feel hopeless is to get up and do something. Don’t wait for good things to happen to you. If you go out and make some good things happen, you will fill the world with hope, you will fill yourself with hope.”
― Barack Obama