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:
-300x300.jpg)
An article published earlier this year by Fierce Biotech outlines an approach that was developed by researchers at the Fred Hutchinson Cancer Research Center. Using CRISPR-Cas9’s
No healthcare professional wants to hear that a drug being studied in a clinical trial did not meet the endpoints. It means that after
Copyscape score: 9% Deondra Clark was unable to have many of the experiences that other children had. Homecoming, prom, sports, and other childhood activities were
-300x300.jpg)
At times there seems to be no happy medium in life. A recent article in Bloomberg claims that the speed at which the FDA is
There is no known cure for sickle cell disease. Treatment is symptomatic and meant to prolong life. While a blood and bone marrow transplant
Grajevis Bakatunkanda lived in the Democratic Republic of the Congo, where he received treatment for malaria after experiencing weekly pain crisis. The treatment he
© Copyright Patient Worthy
