We want to thank everyone who entered our July Blog Contest! Below are our first, second and third place winners!
First Place: Amber Yamada for her awareness tattoo.
“I share global awareness by having the genetic disease symbol tattooed on my shoulder. I explain it quite often that I have a genetic disease and I feel very good about the tattoo itself because it’s a big part of what makes me who I am and my everyday struggle, as it is for many people. I am very open and honest with people when they ask me and I’m not ashamed. It is what it is, and I believe if more people were aware there’d be more funding and research for cures, also just more support in general.”
Second Place: Laura King Edwards
“I’m an avid runner from Charlotte and co-founder of Taylor’s Tale, a non-profit organization dedicated to fighting Batten disease and other rare and genetic diseases. On November 16, I’ll voluntarily run Charlotte’s Thunder Road Half Marathon blind to honor my sister Taylor, build awareness of Batten disease and raise money for gene therapy research at the University of North Carolina. Taylor, 14, ran two 5K races in 2008-09 as part of the Girls on the Run program despite being blind. I’m running Thunder Road blindfolded to honor the five-year anniversary of her first 5K.
I write a blog, “Write the Happy Ending,” about Taylor’s story and our fight against rare diseases. During the month of July, I published six blog posts about my training as well as coaching my mom, who has never run a race but will run her first 5K for Taylor on the same day that I run a half marathon blindfolded. Links to all six posts are below. The blog series has succeeded in not only engaging our regular followers, but also people from outside the rare disease community who are runners and/or read/follow running-related content. This is important – we’ve always said that we must grow our story outside our inner circle and reach new people through stories and topics that interest them in order to achieve our goals.
Blindfolded running-related blog posts in July:
When to Fold a Hand: https://writethehappyending.
Just a Little Rain: https://writethehappyending.
Just the Beginning: https://writethehappyending.
Uneven Ground: https://writethehappyending.
My Turn to Coach: https://writethehappyending.
p.s. Run to the Light, published on June 5, explains the story behind the blindfolded run: https://writethehappyending.
Third Place: Alyssa Ziegler
“I created the social media awareness campaign called rareACTION. I wanted to show people how easy it can be to raise awareness for rare diseases. Any daily activity can bring awareness to rare diseases. When people do something to raise awareness for rare diseases, they can post it to social media sites with the tag #rareACTION. For my rareACTION endeavors, I made about 20 different shirts to promote rareACTION. I wear them during various activities. I usually wear them in places where there are a lot of people because I’m bound to run into another person who has a rare disease (since 1 in 10 in the United States do). I even created a rareACTION magnet for my car so that I could #rareACTION everywhere I go!
I’m also in the process of filming a 3 part YouTube documentary. In about 2 weeks, I am having my yearly tests related to my rare disease to see if I’m still in remission. My disease is called Gardner Syndrome and having it basically means that I will get colon cancer at a younger age if my disease goes untreated. In two weeks, I’m hoping to celebrate 8 years of remission (I had non-cancerous polyps when I was diagnosed and for the most part, they have just about disappeared thanks to a NSAID drug treatment). My first video will be filmed within the next week, where I will be introducing the documentary series and talking about what my disease is and the importance of people with hereditary colon cancer diseases getting screened early and being proactive. Then I will be making a video about all of the ways to make a colonoscopy fun because with my disease, screening tends to start at a younger age. I was 14 when I had my first colonoscopy and I have met children who have had them at an even younger age. My final video will be a documentary of what it is like preparing a colonoscopy.
I hope to raise awareness for all rare diseases. Rare diseases know no boundaries. My brother and I are in remission from Gardner Syndrome and I have yet to meet anyone else like us. My hope is that my YouTube documentary series will empower hereditary colon cancer patients and their families to be proactive about testing early, before surgery becomes the only possible intervention.
My YouTube channel can be found here: https://www.youtube.com/channel/UCu9GETG_NjweF5SGV5E_53A
rareACTION can be found on Facebook (facebook.com/rareACTION) and Twitter (@rareACTION).