RARE Daily

Gina Glass, Executive Director, Dreamsickle Kids Foundation

January 28, 2021

The Basics
Name: Gina Glass

Title: Executive director

Organization: Dreamsickle Kids Foundation

Social Media Links:

Disease focus: Sickle Cell Disease

Headquarters: Las Vegas, Nevada

How did you become involved in rare disease: I have a five-year-old daughter and she was diagnosed at birth with sickle cell disease.

Previous career: Insurance agent

Education: B.S. in criminal justice/law enforcement administration from the University of Phoenix, associate in general insurance designation from The Institutes 

The Organization
Organization’s mandate: Our focus is increasing awareness in Nevada for sickle cell disease. We are advocating for policy changes, addressing the health disparities that affect people with sickle cell disease and minorities in general in the state of Nevada. And we also support those affected by any rare disease in Nevada.

Organization’s strategy: Our strategy is to use social media to increase awareness, connect with the leaders in our state, the politicians, the assemblymen, the councilmen and councilwomen, and connect with other organizations that have a passion and advocate for not only rare diseases, but also for health equity in the state of Nevada.

Funding strategy: We fundraise through our social media platforms. We go after grants and sponsorships from pharmaceutical companies and other foundations that provide grants and sponsorships to nonprofits.

What’s changing at your organization in the next year: We just got our first center, so we will have a brick and mortar office. We’re planning for a grand opening at the end of January. I’ll be moving my headquarters from my closet to an actual office. We will be able to host what we call a Warrior Drive, which is a celebration for those with sickle cell disease or rare disease as a lot of them refer to themselves as “warriors” for the battle that they have to fight with these rare diseases. It’s usually a superhero theme. Unfortunately, last year we couldn’t have it. In December, we were able to host an outside Christmas event that provided food and gifts to about 400 people. We figure that we should be able to have an in-person Warrior Drive and provide some of those same things to people in April, which is also the anniversary of our organization.

Management Style
Management philosophy: My philosophy is do whatever we can, as long as it is focused and in the best interest of sickle cell disease and rare disease in Nevada. I’m the only employee, so I have my hands in several different pots right now. One of the things that I’ve found to be most successful for us is making connections with other people and building a rapport so that people can learn about who we are and can respect our input when it comes to sickle cell disease and the rare disease space.

Guiding principles for running an effective organization: Do what you have to to stay organized. I compartmentalize things as far as accounting goes. We like to make sure that the visions of people with whom we collaborate align with ours as far as advocacy and health equity and helping those in the underserved communities in Nevada. It’s hard because I’m a single parent and I come from an insurance background. It’s kind of a learn as you go. I’ve been fortunate that in starting this organization we haven’t had any major missteps because I pride myself on doing a lot of research before acting: knowing, researching, and understanding what it means to be a nonprofit and executive director, and to manage an effective organization. Don’t do too much and don’t do too little is kind of the way that we run things here.

Best way to keep your organization relevant: Be vocal to make sure that we remain seen. We’re always utilizing all of our social media platforms to raise awareness. We’re always talking to other people and connecting to try and collaborate with other sickle cell disease and rare disease organizations. That helps us to stay relevant because we never stopped talking about sickle cell and rare diseases.

Why people like working with you: I don’t have many fears. If I feel like something needs to be done, I don’t mind being vocal about it being done. I don’t mind being perceived as the bad guy or the problem, because when it comes to sickle cell disease awareness, or rare disease awareness, as long as that’s my focus, then I don’t have a problem with how I might come off to other people. I execute. I don’t mind talking to people. I don’t mind coming up with ideas. Whatever I say that we’re going to do, we do that. With our center, we were fortunate to partner with another small, nonprofit called Jett Foundation. We have become great friends over the past couple of years. My strength is that I like to do a lot of research, internal background, figure out, study the laws and different policies that a non-profit should know. The executive director of that organization is a people person. They have a degree in marketing, so they know how to market things. We let each other operate in our strengths rather than trying to do everything on our own.

Mentor: I don’t know that I would necessarily say I have a mentor because when this organization was founded, it was the first sickle cell organization in Nevada. There wasn’t anybody that I could consult with and look to within the state to figure out the best approach for a sickle cell organization. I draw a lot of inspiration and I aspire to be like a few organizations that I have come to know over the years. One would be My Three Sicklers in Atlanta. They do a lot of different work and support not just individuals and other organizations but get people to understand the importance of voting. Also, Bold Lips for Sickle Cell. The co-founder of Bold Lips recently passed here in December, but how they use social media and their social media campaign to get everybody to wear bright lipstick to support sickle cell, that was like one of the first things that I noticed being a new parent of a child with sickle cell. That’s an organization that I look up to. The Sickle Cell Disease Association of America is another great organization and I hope one day that we can be on their level.

On the Job
What inspires you: My daughters inspire me. I have two. One is 18 and the other, the five-year-old, has sickle cell disease. My inspiration comes from the hope that one day she will have a cure for her disease. I want to be there for other children like her and their families, the moms, the dads, the siblings, because I can see firsthand how having a child with sickle cell disease impacts, not just that child, not just the parent, but everyone in the family. I want them to have that support that I see a lot of other nonprofits are able to provide to their client base. I want to be able to provide that to families in Nevada—a support system, someplace that they can go, that they can call their own because there wasn’t one at the time that I started this.

What makes you hopeful: I’m hopeful that with our organization being in Nevada, many changes will be made and people who do have sickle cell disease will feel more comfortable seeking support, or even relocating to a state like Nevada because they’ll have the confidence that they will be taken care of and receive the quality health care that other states are able to provide to their patients because they have a larger population of patients affected by sickle cell. We were established three years ago in April and, in 2019, we got the first sickle cell bill passed in the state. That provided a lot of benefits that were realized by patients almost immediately. In January of last year my daughter’s hematologist created the first comprehensive sickle cell disease clinic in Nevada, which treats children and adults, which is something that didn’t exist. Adult sickle cell patients had to receive their treatments from oncology clinics and such. There wasn’t a place for them where they could relate to the other patients that were going to these clinics to be treated. Now they will have some place where they can go, and they can be confident in the care that they’re going to receive.

Best organization decision: Our best decision was to start the organization. We’re originally from California. That’s where my daughter was diagnosed with her illness. I had thought about creating the organization. But in California, which has a higher population of people with sickle cell disease, there are already many organizations. They are good organizations that supported sickle cell disease. So, it was something that I pushed to the back of my mind. When we moved to Nevada, and after a couple of incidents, I decided that it would be a good idea to go ahead and create this organization to be a voice for the people here with sickle cell disease and to try to get other medical providers to accept and treat patients with sickle cell disease.

Hardest lesson learned: The hardest lesson learned that I’m probably still learning is that I can’t do everything. Collaboration is great, but I thought that starting this organization where there wasn’t any type of real support for the sickle cell population that it would be welcomed with open arms. That hasn’t been the case. Assuming that I would get support just because of what I’m doing is a hard lesson. When you’re looking to people that you think would be supportive and they’re not, it’s disappointing, but you still have to keep on keeping on.

Toughest organization decision: The toughest decision for us has been to not focus so much on collaboration and focus on the kind of impact we can make as an organization.

Biggest missed opportunity: The biggest missed opportunity I would say would be donation solicitation. Because I’m pretty much the person who does everything, those individual donations aren’t as high as we want them to be because my time is focused on applying for grants from larger companies. I don’t think that donations from individuals is something that’s not as important as donations from larger companies, but I’m not able to build those type of relationships because I spend a lot of time doing more infrastructure duties rather than soliciting and developing relationships with individuals to get donations.

Like best about the job: What I like best about the job is that I get to meet a lot of different people from a lot of different places who are impacted by not just sickle cell disease, but other rare diseases. I’ve learned a lot and I feel like the job that I’m doing is a job that will directly benefit sickle cell patients as well as my daughter. I feel like the work that I’m doing is going to greatly benefit her quality of life sooner than later.

least about the job: There is never an off time. When you work a nine-to-five, you might work Monday through Friday. I’ll probably be doing something working on the organization tomorrow and Sunday and any other holidays. The misnomer that working for yourself is going to be more laid back then punching a clock is not true. Work is seven days a week, 24-7.

Pet peeve: People who don’t respond to emails or phone calls, or people who say they are going to do something and don’t. If I say I’m going to do something, I do it.

First choice for a new career: Advocating for sickle cell is my first choice for a new career. I still love insurance, which I thought was going to be my life until I retired. I did insurance for 12 years. In three years with this, I feel more fulfilled and enjoy working better than I did when I worked at insurance. This is my dream career.

Personal Taste
Most influential book: The Immortal Life of Henrietta Lacks by Rebecca Skloot

Favorite movie: A Low Down Dirty Shame

Favorite music
: Tupac Shakur

Favorite food: Salmon

Guilty pleasure: Chewing ice. I have a bad habit of chewing ice.

Favorite way to spend free time: Reading.

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