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:
Sickle cell disease (SCD) is a rare blood condition. It causes sickling in the red blood cells which results in the blockage of blood vessels
The FDA has recently approved of an updated label for Endari, a treatment for sickle cell disease (SCD). This new label will give medical professionals
According to an NBC AP news item, early results show that CRISPR, a “tool” that alters DNA permanently in blood cells, has the potential to
Unfortunately, many people with sickle cell disease are at an increased risk of experiencing central nervous system complications that can reduce quality of life. But
Written by Gina Glass Like any parent of a child with a rare disease, my world was turned upside down when my daughter, Gia, was
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
© Copyright Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
