This Year I Want To Make a Difference

As the holiday season approaches us, gifts are on everyone’s mind. Giving gifts, getting gifts. I’ve been thinking about it a lot lately and this year I’ve decided to do something a little different…

This year I want whatever money that may have been  spent on Christmas gifts for me, to be donated. I have so much already, I have a beautiful home to live in, I have a loving, supportive family, I have amazing friends, I never wonder where my next meal will be coming from, I am privileged in many ways, I am getting a good education, I can afford the medical care I need, I am not in poverty. There are many out there who don’t have these luxuries and necessities. Some don’t even have bare daily necessities, or even basic human rights, which needs to change.

Many people, like myself, really only have one true thing on their wish list, their health. It’s a privilege for many. And at this time it is simply unattainable to grant our wishes, but by donating to organizations that are doing incredible life changing and life saving research, perhaps one day this wish will be even just a little less unattainable.

So this year I want to do something that matters.

So if you’re planning on buying me a gift, please, instead choose a charity to donate that money to. If you have a favorite charity, please donate to them, if you don’t, I’m going to share some of my favorites with you. All I ask is that you tell me which charity or organization you donated to, no need to tell me the amount unless you’d like to.

I am working on a short video that goes along with this blog post also because this little project has really set my heart on fire and I’m really so passionate about it! Stay tuned!

I’m also challenging each person reading this to donate to a good cause somehow this holiday season, whether it be by donating to the below charities, asking at least one person to donate the money they might have spent on your gift, or buying a gift for someone (or yourself — no judgement, treat yo’ self!) that also gives back in some way.

The US Pain Foundation

The US Pain Foundation is close to my heart as chronic pain is one of the challenges I face. I am even an ambassador for them and have seen first hand how their work touches the lives of those struggling! They offer amazing support and resources to those in need. Donate here.

Global Genes

Global Genes is a wonderful organization that works with rare and genetic diseases. This is very close to my heart for many reasons: first after years of being a medical mystery we think we may have found out what is causing lots of my health problems, it’s a genetic and previously-thought-to-be-rare disease (It’s actually just rarely recognized/diagnosed, not rare in occurrence.) called Ehlers-Danlos Syndrome. Second, many of my friends face rare and/or genetic diseases and I see how hard it is for them. And third, Global Genes fuels an initiative called We Are More that I am a part of. We Are More is an organization that is working to change the way disabled and chronically ill young adults are seen in today’s society. Donate here.

Some of the We Are More team!

Some members of We Are More at the Global Genes Summit in September when we first got together! (We were coincidentally very color coordinated!)

Dysautonomia International

Dysautonomia International is an organization that provides support, resources, and research to those facing dysautonomia. Dysautonomia is a chronic illness that is an umbrella term for many different illnesses which all consist of some sort of autonomic nervous system dysfunction. By donating here, perhaps one day no one will have to face dysautonomia and until then, no one has to face it alone. Donate here.

Dysautonomia International gang at a walk in October!

MORE of the Dysautonomia International gang at the walk!

Beads of Courage

Beads of Courage is an arts in medicine nonprofit “dedicated to helping children with serious illness record, tell and own their stories of survival.” I have my own BOC and for me, they are like a light at the end of the tunnel, when I go in to do the hard things I simply must do, BOC makes it just a little bit easier and even gives me something to look forward to after these obstacles are over. They are also a huge tool I use in telling my story, each bead is like a little snapshot of my “journey”. When I hold my stand of beads, I can hold my story, I can feel all I’ve been through, and that is priceless. By donating you will be helping other sick children, myself included, get this amazing program. Donate here.

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Kylie Rowand Foundation

The Kylie Rowand Foundation is helping families facing childhood cancer deal with this immense battle in the name of the beautiful baby girl who left us far too soon. Donate here.

Alex’s Lemonade Stand Foundation

ALSF raises money and awareness for childhood cancer, primarily for research into new treatments and cures, and to encourage and empower others, especially children, to get involved and make a difference for children with cancer. Donate here.

Cystinosis Research Network

Cystinosis is a genetic metabolic disease that causes an amino acid, cystine, to accumulate in various organs of the body. Cystine crystals accumulate in the kidneys, eyes, liver, muscles, pancreas, brain, and white blood cells. CRN is doing life saving research to better the live of those faced with this terrible disease. Donate here.

Binkeez For Comfort

Binkeez for Comfort makes and delivers blankets and other items with the intention of bringing comfort to individuals experiencing health issues, particularly children in hospitals and hospice facilities in the United States of America. The hospital is a hard place to be, especially as a child, and Binkeez For Comfort makes it just a little easier and brings love into a tough situation. Donate here.

The Superhero Project

The Superhero Project is my own project I started. The Superhero Project works to bring extra superpowers to those in need and supports superheroes fighting big battles. You can be your own hero in times of hardship. If you’d like to learn more or donate please contact me at ssuperheroproject@gmail.com.

The Superhero Project put together and brought over 20 care packages to the pediatric cancer patients at CHOC in September!

If you are insistent on buying me a gift please buy one that will also benefit others, although I am truly happy for the money to simply be donated!  Here are some options:

Bravelets, Love Your Melon, Out of Print Clothing,The Company Store,Better World Books, Project 7, Headbands of Hope, Go Shout Love, and Chronically Fabulous.