Rare disease day is just around the corner. This Saturday February 28th is a day where the rare disease community comes together to raise awareness as a group to show that rare is EVERYWHERE. As a united community RARE disease affects more people then aids and cancer combined. It is such an important day for families like ours, and the Niemann Pick community, as it I giving us all a larger voice by uniting together.
Like years past we are asking that this year you wear your genes, I mean jeans, and tell someone about our Nation of Warriors in the fight against Niemann Pick and other Lysosomal Storage Disorders (wyldernation.org). We also have a very special group that is putting on a Warrior Challenge this year to spread the word about Wylder Nation Foundation and raise awareness! They are a group of students from Santa Clara University and they are AMAZING!
Jake, Chloe, Taylor and Ryan are spreading the word about NPD and Wylder Nation Foundation for their senior course project, WOW!! To watch the next generation jump on board for this cause, is life changing. It is amazing the an understanding of the importance of nonprofits and how coming together for these children is so important … and they are “getting it” at such a young age.
They learned about Wylder Nation Foundation because Jake’s cousin is WARRIOR Garrett (NPD A/B)!! So this is a cause has become very personal and dear to their hearts and we are overwhelmed and grateful that they thought of our foundation for this project and spreading the word.
Their project is a social media competition. It’s easy … here is how it works;
Follow Wylder Nation on Facebook (facebook.com/wyldernation), Twitter (@wyldernation) and Instagram (wyldernation)
Take a photo of yourself in a Warrior pose of your choice (see some photos already entered in the competition for ideas below)
Post them to your instagram, twitter or facbook using the hastag’s #Wylderwarriors #Wyldernation #raredisease
You will then automatically be entered to win some amazing prizes like an Autographed Klay Thompson Jersey or a free month of yoga at Corepower Yoga. The winner will be determined by the most ”likes” on instagram.
Fun, right?! And to raise awareness about the Warrior’s in the fight! … priceless! Thank you Jake, Chloe, Taylor, Ryan for all you are doing.
Rare Disease day and awareness is general is so so important to our community and our hearts personally. Without a communal voice we will not get as far with the progress of fighting these diseases. Unity is hope. Thanks for your support as always and have fun. We love you all.
We love you and we miss you Wylder. We will be thinking of you even more than we do everyday on Saturday. We will see you in our dreams little one. xoxo