Glass, Georgene

Speaker Information
First Name
  GEORGENE
Last Name
  GLASS
Preferred Pronouns
  SHE/HER
Email
  [email protected]
Phone
  (702) 321-1864
Organization
  DREAMSICKLE KIDS FOUNDATION,INC
Job Title
  EXECUTIVE DIRECTOR
Credentials
  BS CRIMINAL JUSTICE, CHW, PATIENT CAREGIVER
What rare disease do you represent?
  SICKLE CELL DISEASE
How many years have you been involved with Rare Diseases?
  5-10 years
As we develop programs and resources to empower our diverse community, we ask participants to select the response that best reflects their race and or ethnicity:
  Black or African American
Upload or submit your biography
 

Biography
  Georgene’ Glass is the founder and Executive Director of Dreamsickle Kids Foundation, Inc, the first Sickle Cell Disease (SCD) organization in the state of Nevada.

Since 2018, the organization has led Sickle Cell support and advocacy in Nevada contributing to the state’s first Sickle Cell bill AB254 which has allowed for better access to medications specifically made for SCD and a state registry to obtain an accurate count of the number of patients in Nevada affected with SCD.

Georgene’ also serves as a Vice Chair of the Nevada Rare Disease Advisory Council created in 2019. As a mother of a child with SCD, Georgene’ has made increasing SCD awareness and support in the state of Nevada a personal mission. With SCD being one of the 7,000 Rare Diseases, in 2020 Dreamsickle Kids Foundation, expanded its support and efforts to those in the state that may suffer from any Rare Disease.

This year Georgene’ became an author, publishing The Tale of the Cell, a children’s book about the ups and downs of the disease starring her daughter with SCD Gia. The book gives an entertaining yet real view of how SCD affects people and ways they manage and still enjoy life. Georgene’ holds a B.S in Criminal Justice, is a Community Health Worker (CHW) with special CHW training from the Sickle Cell Disease Association of America which allows her to further advocate and support those with SCD in Nevada.

Target Populations: Children, School Aged-Children, Teens, Young Adult, Adults, Caregivers, Low Income, Chronically Ill, Rare Disease patients

Research/Focal Areas: Children’s Health, Family Health, Health Equity, Legislative Advocacy

Health & Safety Comfort Level
  I’m ready to participate in an in person meeting with the safety measures NORD will have in place
Travel Distance from Cleveland OH:
  2045.5 MILES
Presentation Information
Proposed Presentation Title
  Making Sickle Cell Popular: How we can work to bring support and awareness to this rare disease affecting an often-marginalized population
Presentation Summary
  Making Sickle Cell Popular, has more to do with increasing awareness and advocating for better medical treatment and paths to curative therapies. The idea is not to just garner attention and notoriety. The goal is to educate and advocate on a level in unity with advocates from all Rare Disease backgrounds. SCD is one of the most common genetic diseases, yet it lacks options for management of the condition, has very few preventive measures in place, receives less funding in comparison to rare diseases affecting a smaller population, and is fairly new to the Rare Disease space. Advocacy for this community has historically been achieved only by interested parties, usually those with a direct connection of sorts. In order for there to be more movement to foster chance on a social, legislative, and scientific level. There needs to be unity within the entire Rare Disease community to do their part to make sure people are aware and understand the need and urgency for support and better treatments to help those affected with SCD. Dreamsickle Kids Foundation has been able to leverage partnerships, social media and other media outlets to change the landscape and Nevada's approach to SCD. The actions we have taken to #MakeSickleCellPopular in Nevada, have led to long term changes for SCD in the areas of data collection, medication, pain medication, and education. It is through these actions that we are now able to make changes that directly address the health disparities experienced by people with SCD. These changes were accomplished for a population of patients that is 1000 or less, that is barely 1% of the 100,000 individuals affected with SCD. If our efforts can be duplicated on a large scale with support from other advocates and industries, we would be able to make very impactful changes that will benefit people with SCD for a lifetime. By sharing the small but mighty changes we made to gain support for SCD in Nevada, it is our hope that other advocates, industry, and medical professionals will work to make some small changes that have the potential for a huge health impact for those affected with SCD throughout the US.
Please provide up to 3 examples of previous presentation experience, include links to videos if applicable.
  Nevada Health Conference 2019
Rare On the Road 2020
SCDAA Convention 2020
Caregivers Summit (Sickle Cell Community Consortium) 2021
Target Audience:
  The target audience is the entire Rare Disease Community, SCD patients, advocates, and caregivers, doctors, nurses, those in the medical field , including community health workers, legislators, insurers, and industry.
Learning Outcomes:
  The learning outcomes :
1. Understanding of what SCD is and its impact
2. The need for healthcare providers to implement a standard of care for SCD patients
3. Steps that individuals and professionals can take to move the needle on SCD support on a local level to increase awareness, support, adequate medical treatment for patients to address health disparities
Consent
  As a potential speaker for the Living Rare Living Stronger Patient and Family Forum I agree: