Dissatisfied with the lack of resources and Awareness for Sickle Cell Disease in NV. Mother of 2, one being a small child diagnosed with Sickle Cell Disease (SCD). Georgene Glass created Dreamsickle Kids Foundation in April of 2018. When she set out to create the foundation, the goal was to get people talking about the rare disease in Nevada; to #MakeSickleCellPopular.
Over just a year Dreamsickle Kids has gained local radio, news ,magazines, and even landed a cover story in a popular Las Vegas newspaper in effort to raise awareness for the chronic rare illness. Not only was Dreamsickle Kids Foundation the first SCD organization in Nevada. Last September, they held the first Sickle Cell walk in Las Vegas in five years that was sponsored by the Nevada Childhood Cancer Foundation, another rare disease that also shares the month of September with Sickle Cell Disease. Dreamsickle plans to follow up with their 2nd annual walk this September for Sickle Cell Awareness month with an even bigger charity walk planned.
In just a short year Dreamsickle Kids has been invited to contribute to what will be Nevada’s 1st Sickle Cell State Action Plan led by a hematologist at the only clinic in Nevada that treats children with SCD, Dr.Nik Abdul Rashid. Dreamsickle Kids has become a lead supporter and has made contributions to the language to be included in what will be Nevada’s first Sickle Cell bill AB254 sponsored by one of the state’s Assemblywomen Dina Neal.
The former President now Executive Director Georgene’ Glass has traveled to many states to learn more about how to best advocate for SCD and learn of new advancements in the effort to cure SCD. She was a team lead for Rare Disease Week in February, Dreamsickle Kids became a partner of the Sickle Cell Community Consortium, they are in the process of becoming a member of the National Organization for Rare Diseases (NORD) and once they join they will be the first SCD organization to become a part of NORD.
Dreamsickle is achieving many first that will but them in a position to be a leading advocate organization for SCD in their state.
Here is a list of conditions this partner raises awareness and advocacy for:
Hereditary Hemochromatosis Hereditary hemochromatosis (HH) is a rare disease caused by hepcidin deficiency or hepcidin insensitivity. Hepcidin naturally regulates iron absorption/distribution in the body. Without
-300x300.jpg)
Calls to Ban CRISPR A scientist named He Jiankui recently shocked the scientific world with his announcement that he had created twin “CRISPR babies”.
According to a story from BioSpace, the biopharmaceutical company Imara, Inc. has recently announced that its experimental product candidate IMR-687 has earned Fast Track designation
The Cure Rare Disease Foundation The Cure Rare Disease Foundation‘s mission is to increase collaborative efforts between researchers in order to accelerate the development of customized
According to a story from CNBC, the now former Commissioner of the US Food and Drug Administration (FDA) Scott Gottlieb was recently featured on the
LLUCH Loma Linda University Children’s Hospital (LLUCH) is one of six hospitals in the University’s health system. They are a faith-based system located in Southern
© Copyright Patient Worthy
