Jul. 28, 2015
Posted by Christina Jensen
Recently, NORD was happy to receive a Facebook message from a young woman named Angelia Benson. She expressed interest in using NORD’s logo in a parade as part of her competition to become Miss Utah. We were thrilled to learn that Angelia, who is the reigning Miss Iron County Utah, was interested in rare diseases and in using her platform as part of the Miss Utah pageant to raise awareness! We took the opportunity to chat with her to learn more about her campaign to represent rare diseases.
Tell us a little about your history with pageants.
I am always looking for new things to try, so when I heard about the Miss Iron County Pageant I figured it would be a fun experience! I ended up winning the interview, evening wear, lifestyle & fitness and the Miss Congeniality award, along with being crowned Miss Iron County 2015. I sang for my talent performance, and although I’ve been singing around the house my whole life, it was the first time I had ever performed in front of anyone. After being crowned Miss Iron County, I competed in the Miss Utah Pageant, which had 51 contestants (I had previously competed with just four other girls), and it was honestly one of the best weeks of my life.
Tell us a little about this most recent event that you did.
June 15–20th was the Miss Utah Pageant. Beginning on Monday and Tuesday we had an autograph signing party and the “Show Me Your Shoes Parade” in which each contestant designed a pair of shoes and an outfit to represent their title or their platform. My platform was Rare Disease Advocacy and Awareness. Wednesday night the preliminary competition began with Lifestyle & Fitness (swimsuit), Thursday was Onstage Question & Interview, Friday was Talent (I sang “How Will I Know,” a Whitney Houston song), and Saturday the top-11 were named, they did every event, and the new Miss Utah was crowned.
What is your connection to rare diseases?
I have always loved working with individuals who are differently abled and have special needs. I peer tutored starting in the second grade, and continue to work with those who have disabilities. My aunt founded a non-profit group called Aware of Angels, advocating for genetic testing and research for families of children with rare diseases. Aware of Angels also has a photography project, which documents these Angels and their families in order to raise awareness and provide families a keepsake of their children. I’m proud to say that my whole family is involved with Aware of Angels, and we help at any event that we possibly can.
If you have a rare disease, how are you managing it?
I do not have a rare disease. However my cousin has 2q23.1 Microdeletion/Duplication Syndrome. She went five years without a diagnosis, and I have been able to witness firsthand the daily struggles that come with not having a diagnosis. From the physical and occupational therapy, to the diagnostic appointments, to the maneuvering of special equipment, the families of these “Angels” often experience more in one day than many will go through in a lifetime.
What have you done in the past to raise awareness for rare diseases?
I have worked with Aware of Angels since they were founded in 2013. I have actively participated in many social media campaigns such as #wearyellowforseth #careaboutrare #utahrare #rdd2015 #2q231MDS, and firmly believe in the power of social media to advance rare disease awareness. While individuals with rare diseases may seem to be finding their way into the spotlight thanks to positive “posts” “likes” and “shares”, there is still much to be done to diagnose and provide palliative resources to those affected by rare diseases.
What does it mean to you to be able to raise awareness for rare diseases?
Being a member of the rare disease advocacy community in Utah, I have witnessed the “behind the scenes” struggles of just getting a disabled child through a typical day. The families of these children work tirelessly to ensure that their disabled family member is properly cared for, while balancing other children, work, sky-high medical bills, and – more often than not – no actual diagnosis. I am passionate about raising awareness and giving a voice to the rare community, because this is a work that will have no definite end, there will always be someone who needs to be fought for and someone who needs a voice.
Do you have advice for other people who want to raise awareness for rare diseases?
My advice is to be bold. Seek out organizations, family friends or family members, who you know have a condition or need a voice. Don’t wait for an opportunity to present itself, be proactive, seek a way to help whether it’s posting a shout out, volunteering a few hours at an event, or just going to sit and visit with someone who needs support. My favorite quote is from Margaret Meade: “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it is the only thing that ever has.”
NORD was honored to talk with Angelia to learn more about why she raises awareness for rare diseases. She said in a broad statement to the rare disease community that she will be, “advocating for the rest of [her] life, and [she] can’t wait to see what the Rare Community will be able to accomplish.”
Angel is an outstanding advocate for the rare disease community! NORD is so thankful for her support in raising awareness for the organization and Rare Disease Day!
Rare Disease Day 2016 is coming faster than we think! Have you started planning for the big day? Send us an email with your plans so far at firstname.lastname@example.org. 2015 was the best year yet and 2016 will be even better with your help!