Potential Sickle Cell Treatment Receives Designation From FDA
Patients suffering from sickle cell disease, SCD, might just be getting news they’ve been waiting to hear for a long time. Just this week, the
- Rare Disease News
Dreamsickle Kids Foundation
Dreamsickle Kids Foundation
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.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
Patient Worthy Posts on Sickle Cell Disease
School Sends Girl Home Permanently Due To Her Rare Disorder
Lydia, a 16-year-old student at Ng’iya Girls High, was sent home permanently due to her rare disorder, reports Daily Nation. Lydia suffers from a disease
The City of Hope Just Received Millions in Funding To Test A New Procedure to Treat Sickle Cell Disease
According to a story from bioportfolio.com, The California Institute for Regenerative Medicine has given $5.74 million to the City of Hope, a private, nonprofit clinical
Sickle Cell Disease Patients Face Stigma About Their Need for Painkillers
Patients with sickle cell disease often face stigma about their need for pain medication because care providers are suspicious of drug abuse, reports The Dallas
Woman Cured of Her Sickle Cell Anemia After Stem Cell Transplant
Now these are the kind of stories we love to read about! Canadian Revée Agyepong is the first adult in Canada to be cured of sickle
A New Sickle Cell Diseases Drug Has Been Awarded Orphan Drug Status by the US and EU
A new drug called Altemia is being developed to treat sickle cell diseases in children, reports BioPortfolio. It has recently been awarded Orphan Drug designation
