Victoria Graham currently holds the title Miss Frostburg 2017 and uses her platform to raise awareness for invisible illnesses and the different forms of beauty. You can visit her community of warriors here and see her latest project, The Zebra Network - connecting professional Ehlers Danlos patients - here
Sam and Alex are two sisters with a mission of making sure no one goes without a bone marrow donor. When Sam was seventeen years old, she was diagnosed with rare blood disorder aplastic anemia. The only treatment option at the time was a bone marrow transplant, so her sister, best friend, and herself hopped in a van to drive around the country searching for possible donors, not only for herself, but other patients on the waiting list. They were honored as the Global Genes 2016 Champions of Hope - Advocacy for their work. Visit their site and get involved here.
Epidermolysis Bullosa is a rare collagen disorder, and Debra of America is dedicated to helping families affected by it, raising awareness, and funds for research. I am part of their Youth Leadership Committee, which is super exciting! We'll be working together in the future and doing a lot with body image and self esteem, which is something I'm incredibly passionate about. You can read an interview I did with them here, and head over to their website here to see the great work they're doing for the community.
Dominique is a strong young woman who realized that there needs to be better communication between pediatric patients and doctors. So, she started InvisiYouth Charity to help educate both doctors and patients about this. This is a mission Sick Chicks wholeheartedly supports because you are your own best advocate, especially because many of our illnesses often aren't seen.
I recently met Ellie Wheeler through our new advocacy initiative We Are More. She created the Superhero Project because sometimes everyone just needs a little super strength! When we met she gave me a bracelet, and you know what ever since then I've been feeling a bit more unstoppable. So go check her out!
We've all heard it: laughter is the best medicine. I'm inclined to agree, and so is Lindsay Hays over at Laugh Out Lyme. A website similar to Sick Chicks in the sense where it isn't all about illness. It's about community, and how to LOL in tough situations. Go check 'em out! Also, give their Facebook page a "like". Their posts are guaranteed to make you laugh.
I've been in and out of many hospitals and it’s not fun. This organization, Love Packages, which is run by teens, sends out personalized care packages to make hospital stays feel more comfortable and homey. Right now this is only an idea, but it’s a great one, and I think this could become really big for the chronically ill community.
Made by Mer
I first met Meredith, or Mer, at a doctor’s appointment in Toledo, Ohio. Which was a far distance for the two of us to travel, me from California, and her from South Carolina. We became instant friends, and so did our moms. Mer is one of the funniest, sweetest, and smartest people I know. She is also an excellent baker – let’s be real that’s all that matters, the fact that she makes coffee cake that is to die for. She also is a talented web designer, in fact she did this website. Mer will design websites for a donation to a charity of her choice; she has some amazing organizations on there that you should really check out. I think the work she’s doing is great as you can see from my site!
This organization was founded by Sami Petersen, she had severe scoliosis and founded this organization. I have not met her, but she is a big name in the scoliosis community. She has brought screenings to schools all around the country that would normally not receive these screenings, started a program called the Purple Paintbrush (which is so awesome, I really encourage you to check it, and get involved if you can!), and other programs that bring sick kids comfort while they are in the hospital.
Curvy Girls is an organization that has been successfully empowering girls with scoliosis since 2006. It also sets up peer groups around the country to connect girls going through similar experiences. They help get rid of the stigma of scoliosis and make it seem cool to be “curvy”. This organization won a Halo Award because of its impact on the scoliosis community. It was founded by Leah Stoltz.
I’ve been going to conferences since I was diagnosed with EDS, and sometimes you meet people that just stand out. Emily was one of them. She has turned her challenges into a way to inspire others. She is an activist and a champion for social justice. Emily also loves music and sings and plays guitar, which we bonded over.
This organization was founded by Carly Becknell, and while I have not personally met her, I am in awe of the things she has accomplished. Carly has Ushers Syndrome, which is a rare disease that affects both the eyes and the ears. She has turned the diagnosis into an opportunity to reach out to others with eye disease and raise awareness.