Welcome to Project Wear Your Genes
While LYG encourages everyone to accept one another, Project Wear Your Genes is about bringing awareness to specific genetic diseases.
The goal of the project is to bring awareness to the thousands of genetic diseases people are effected by. With awareness comes acceptance, inclusion, & confidence, something we believe every human should have.
For this project, we want to reach out to people that have had a genetic disease/disorder impact their life or a loved ones life. We want to share your story & bring awareness to your disease!
If you’d like to part take in this project, send us a picture of you or your loved one wearing our LYG gear and your story. When we share your story, we will also provide an informative website link about your disease & what people can do to get involved. Your story will be featured on our Instagram, FB, & our website.
If you have already been featured on our social media platforms & have a story you want to share, please reach out!
We are SO incredibly excited about this project & want to share your story with the world! You can send us your picture & story on Instagram, Facebook, or by contacting us on our website. We want your stories to be heard. Thank you so much. We can’t wait to read/share your stories!
We are incredibly humbled & thankful to be able to share Stephanie’s story of a sisterly bond for Project Wear Your Genes with the world. Stephanie shares her story of her bond with her sister Heather, who had SMA (Spinal Muscular Atrophy) & how Heather continues to inspire Stephanie, even after her passing.
“My name is Stephanie and my oldest sister Heather had SMA; she passed away in 2004 at the age of 29. Heather was, and still is, an inspiration to me and many others. She never let her disability hinder her life in any way. Growing up we went to hundreds of concerts together; she is the reason why I am the music lover I am today. I have another sister, Angela, as well. Angela and Heather were like peanut butter and jelly, being only 15 months apart. They had all the same friends and I was always trying to tag along. Heather lived a full life of love and friendship. She had a job, went on vacations, got engaged...everything, and more, that most normies do. In short, Heather is my Angel and I talk to her every day and I carry her ashes around my neck in a pendant that never comes off. Her smile was infectious, her laugh was even more so. She taught me that I should never complain, because she never did.”
To learn more about SMA & how to get involved, check out the website below
Thank you so much Stephanie, for sharing your story with us 💖
I was so excited when I had the opportunity to be able to connect with Shanna and for her eagerness to share her story with us for Project Wear Your Genes. I thought it was very special that I was able to publish her story on the last day of EDS Awareness Month. Welcome to this beautiful lady's story.
"Dear Reader, Do you embrace your genes, love them? I’d never thought about that concrete acceptance of who I am until I found Alex. And those who don’t have a genetic disorder I am positive you take your genes for granted. As a society I feel very strongly we all need this movement as a way to find acceptance and inclusion for everyone. Special needs, disabled, anyone and everyone.
I was born with Ehlers Danlos Syndrome, EDS as it’s commonly called. EDS is a connective tissue disorder generally classified by joint hypermobility; loose/unstable joints which are prone to frequent dislocations and/or subluxations; joint pain; hyperextensible joints (they move beyond the joint’s normal range), arterial/intestinal/uterine fragility, debilitating musculoskeletal pain, and more since connective tissue is found everywhere in the body. There are 13 subtypes of EDS. I have type 3. EDS also brings along partner conditions such Dysautonomia, Chiari, gut dysmotility, Colitis, Endometriosis, Interstitial Cystitis, Dysphasia, Anxiety and more. It’s caused me specifically difficulties walking to the point that I’ve used a cane since my teens and now since turning 30 several years ago a walker and/or wheelchair.
As a child I found myself unable to run or play like others as my kneecaps kept dislocating. Not knowing about the EDS we tried multiple surgeries to correct it which all failed. At the age of 31 I was finally diagnosed. At a time when my shoulder, hips, knees, and every finger I’ve got refused to stay in place daily and I had vertebra twisting around in my spine. In excruciating pain I finally found help and a diagnosis. The rarity of the condition and research was finally catching up to my need. Like many I take physical and occupational therapy like a job, I use leg braces and a walker for short distances and a power wheelchair for long distances. I rely on pain management for help. I have lost the ability to have childen due to EDS. I have had to have a hole which formed in my heart repaired with an implant. I suffer seizures and intractable migraines. And I struggle with many of the conditions that follow along with EDS.
My mom also has EDS. It affects her differently. She’s had to have multiple surgeries on her hands and her neck and back are not good. However, she’s been able to walk and worked for most of her life where I’m on disability. I hate seeing her with it as I’m sure she feels that way about me. My best friend has EDS and her body is again affected differently than Mom and I, although she too has found herself needing a wheelchair past age 30.
Loving your genes with EDS takes daily reminders, sometimes hourly encouragement. And strength, courage, willpower. I’m not saying I have these traits, but I’m saying I’m working on it even though it feels like I’m being a burden at times. Knowing I’m not alone, that there’s a group of LYG folks with me...that’s a source of strength. For all of us."
To learn more about EDS & how to get involved, check out the website below!
The central tenant of Love Your Genes is spreading awareness. While Love Your Genes is an inclusive movement of self-love, Project Wear Your Genes is about spreading awareness to specific genetic diseases. Here is little Kyler rocking his Kid’s LYG tee, looking cute as ever. Welcome to Kyler’s story 💛
“Hi! My name is Alyssa. I am the mother of three beautiful children, a singleton and a set of twins. One of the twins, Kyler, had a very scary start to life and spent the first several months of life in the hospital. Kyler is medically complex and has a list of diagnoses, one of them being Sotos Syndrome.
Sotos syndrome is a rare genetic disorder, occurring in approximately 1 in 14,000 children. It is characterized by a distinctive facial appearance, overgrowth in childhood, intellectual disability and hypotonia (low muscle tone).
Kyler is loved just the way he is, and I would never change anything about him. One thing I wish I could change is the way society views those who are different or have additional needs. I encourage everyone to have the ability to recognize and accept others’ differences, and celebrate them. I am grateful for this wonderful campaign and hope that it is successful in bringing awareness to Sotos Syndrome, as well as other rare genetic disorders.”
To learn more about Soto's Syndrome & how to get involved, check out the website below!
Welcome to Johns Project Wear Your Genes story! John volunteers at a week long camp for children effected by Muscular Dystrophy which is held by the Muscular Dystrophy Association. Despite his initial anxiety of being a first year volunteer, he ended up loving camp and will volunteering for the fourth time this July!
“Let me start by saying I do not have any type of muscle disorder and found out about WheelchairRapunzel & Co through a Instagram suggestion.
My story begins 4 years ago when I attended MDA Summer Camp in Georgia as a Camp Counselor for the first time. I learned of Summer Camp during a morning huddle at work where our store manager spoke about camp and our shamrock sales goal. At lunch with a co-worker after talking about camp we both thought it sounded like fun and decided to sign up. Once shamrock season had ended and the fact that I moved another location the talk about camp faded and didn’t come up again.
Then one day a couple of months later while checking my email I saw a subject line that read, “Male Councilors Needed!!!” I opened and read the message that stated that there was a need for 6 male councilors and without there would be 6 campers unable to attend because of their age they had to be paired with a male. The application and attachments where very detailed and would take a little time to complete so I forwarded the email to my personal address. With the application submitted and references contacted the next step was my in person interview at the MDA office in Charleston. It took about two weeks for me to get the word that my application was approved and that I would be attending my first camp as a counselor.
Before I knew it the bags were packed and I was off to Camp Twin Lakes in Rutledge, GA still not totally sure what was ahead in the week to come. As we didn’t have to check-in until 4pm saturday only consisted of review of application, turning in of cellphones and car keys, counselor teams and cabin assignments, dinner and finishing with a camp safety video.
First thing on Sunday after dressing I took a minutes to review the schedule for the day. 8:15-Breakfast 9:00-Orientation 12:00-Lunch 1:00-CAMPERS ARRIVE!!! As I went through the morning my anxiety began to grow. The orientation discussions all seemed to take on an importance and the laid back feeling of breakfast was clearly gone. Procedures for the correct transfer of a child from their chair was demonstrated. Traveling in groups of three and heightened awareness around water activities was stressed. The administering of meds, physical therapy concerns and assisting with personal hygiene. It was all sarting to GET REAL and FAST!!! The final session ended with, “You are here for the Campers 24 hours per day. This is THEIR week!” I took a moment to collect my thoughts and realized I was shaking. What did I get myself into? Lunch was a blur and before I knew it I was being paged to the welcome zone as my camper had arrived.
I meet Jake and we were directed to the gym to complete check-in. Things in the gym were crazy with trying to check-in arriving campers and ensuring the parents that they had nothing to worry about for the week. I tried to stay focused and remember the trainging from orientation but I was getting distracted. There were power chairs zipping by. Parents assisting with manual chairs to get those last couple of minutes in before their departure. The sound of walkers and crutches sliding across the gym floor. Once Jake was checked in we were off to the cabin to get him settled in and to meet the other campers assigned to our cabin. Once all the Boys were introduced we got the beds made up, gear stowed away we all sat down and took a deep breath. After we returned from dinner we got the schedule for the week out and had each person pick what they were looking to do the most. I picked Water Wars which is a huge water fight hosted by the local Fire Department but I was thinking check out on Friday was looking good. I just wasn’t feeling it.
The schedule is set up so the campers can take advantage of the many activities Camp Twin lakes has to offer so Monday moved right along and we were back from dinner and on our way to the Camp Pool Party. We were in the pool a short time when Jake asked if I could get the swim googles we had left in the basket on his chair. As I turned to return I was able to see the entire width of the pool and I paused for a moment to take in what I was finally able to see.
Since all the campers were in the pool there were no chairs, no walkers, no crutches or leg braces. Just a group of children playing in a pool and having the time of their lives. For the first time I was seeing the picture the right way. I was here to just lend a hand if and only if needed. As the week went along I would learn how smart, funny, talented and most importantly how strong these children are. When check out did come on Friday I didn’t want to leave because it turned out to be such a great week and I have already started to plan for this year’s camp in July which will be my forth year.
124 Days to Camp!!!”
To learn more about the various types of diseases categorized as Muscular Dystrophy & want to learn more about MDA camp/how to get involved: www.mda.org
Our motto: “Embrace your rarity. Be different. Do it in style. Love your Genes.” This motto holds particularly true for Kristen & Abby.
We are so excited to share our first story of Project Wear Your Genes, which was written by a lovely lady named Kristen. She shares her story of her friendship with Abby, who has SMA (Spinal Muscular Atrophy) type III & their journey to create an accessible clothing line together!
“Hello!! I’m Kristen, a recent college grad (Go Wolfpack!!) living and working in Chapel Hill, NC. I am a Resident Services Manager at a student housing complex servicing the UNC campus. I have made some of my closet friendships from the past seven years in the industry, including my best friend Abby.
Abby and I grew up as family friends from the same small town in rural North Carolina. But becoming neighbors and co-workers brought us even closer. We quickly realized we have a lot of the same passions, including fashion and music - especially Drake & J. Cole 😉. Outside of her incredible work ethic and dedication to success, she possesses a great sense of self love and confidence. This radiates through everything she does, making each interaction with others special and genuine. Abby is also a recent college graduate, who lives with Spinal Muscular Atrophy (SMA) Type III and uses an electric wheelchair for mobility. I learned that SMA is a genetic disease that effects the nervous system controlling the muscle movement in your body. After talking with Abby and researching more about SMA, we decided to get further involved in the community – connecting with SMA doctors in our area and attending our first conference and local SMA event last year! We also celebrated Abby and others beginning the first ever FDA approved treatment for SMA, Sprinraza!!!
Through these experiences, we have met many awesome people and advocates who will be lifelong friends. Often these connections began over conversations about fashion, with style hacks, tricks, and tips being traded in between each session at the annual conference. We listened to our new friends speak about the common issues they face daily when it comes to getting dressed, looking cute, and feeling confident. Sometimes it feels like society doesn’t give us the tools to love ourselves – so WE must innovate them!! This is what sparked the idea for Abby and me to create a fashion-forward clothing line inclusive for all bodies (including electric wheelchair users!!), something we’re currently developing now!
We feel that acceptance and inclusion of all people is most important, and the Love your Genes movement is bringing the world closer to that goal! This is just the beginning!!
To learn more about SMA & how to get involved, check out the website below!
Thank you so much Kristen, for sharing your story with us 💖