After her own diagnosis of epilepsy, Emily was looking for a way to give back and support others in her community. She hand sews #EpiBears and delivers them to pediatric neurology units at local hospitals. You can buy one of her bears here.
After their son Shane passed away from a rare disease in 1997, his parents Catherine Curry-Williams and Scott Williams searched for a way to honor his life. They realized that one of the biggest social impacts of disabilities in children is the inability to do "normal" things like play on a playground, so Shane's Inspiration was born. The mission is simple; make playing accessible to every child. Check it out here!
Claire Wineland is your typical young adult, except she's dying and awaiting lung transplant for Cystic Fibrosis. She is an accomplished speaker and fights for others with rare diseases while sharing her own journey and changing perceptions on illness and dying. Check out The Clairity Project here!
I met Christina at the Global Genes 2015 Tribute to Champions of Hope, where we quickly bonded over hair dye. She is a beautiful soul who was taken much too soon. Her friends and family are continuing her philanthropic legacy through the Christina Grimmie Foundation which will support those affected by gun violence and breast cancer. Support this here.
I met Hannah at the Children's Inn An Evening For Hope Gala in 2017, we instantly hit it off. She has an ultra rare disease called Giant Axonal Neuropathy (GAN) and is the second patient to receive gene therapy. She and her mother are incredible advocates and started the first foundation for GAN, check it out here.
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.
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!