National Rare Disease Day is Coming

National Rare Disease day is coming up next Thursday, February 28.  That’s us Wylder Nation!!!  It is an internationally recognized initiative coordinated by patient associations such as NORD and Global Genes Project meant to raise awareness about the 6,000 rare diseases that affect more than 60 million people (including Niemann Pick A).  World Rare Disease Day is an annual day to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare and genetic diseases and their families.

Our plans for the 28th are to visit both Phoenix Children’s Hospital and Scottsdale Shae Hospital and pass out ‘Hope is in our Genes” denim ribbon, “Warrior Baby Books” and some Wylder Nation goodies from our Warrior.  I encourage you all to do the same with your families wherever you are.  Let’s be sure and support this amazing cause and day by showing that Wylder Nation continues to join in this movement so that one child’s life will continue to change many.

I would also like to spread the word through social media to raise awareness about rare disease and Niemann Pick A, but I need your help!!  For starters if you could make this your Face book profile picture or share it on your personal websites, that would be wonderful:

rareday

I also wanted to create a Twitter feed to go viral while making sure to tag @wyldernation @globalgenesproject and @NORD.   I am looking for ideas of tags ect that would include our Warrior so that we can spread the word “Warrior Style”.  Any ideas?  I will definitely need your help though considering we are so very new to twitter (and even facebook for that matter).  I figure if those kiddos can get a 1 million hits for there parents to get them a cat, we should be able to do something GREAT in memory of our Wylder, don’t you think? Let’s think up something fabulous for our Niemann Pick Family and our rare disease community to make sure we use social media to our advantage that day.

Our sweet friend Phil at Genzyme is only 55 days away from his run in the Boston Marathon in honor of our Wylder James, and him and his team have come up with what they are doing for Rare Disease day.  On Rare Disease Day, Genzyme employees around the world will be participating in numerous activities to celebrate the day, including a relay with a cycling event in the Netherlands and running events in Ireland and Massachusetts. To learn more about last year’s event, check out http://runningforrarediseases.org/2012/03/06/genzymes-rare-disease-day-relay/.   You can participate from your own area this year by registering for the virtual event by following the link racemenu.com/GRT5kNORD.  All the proceeds from registration are in support of the Genzyme Boston Marathon team (including Phil!!) and will benefit the National Organization for Rare Disorders (NORD). “Alone we are rare, together we are strong.”

Here are some ways you can donate to help the National Rare Disease Day:

http://www.firstgiving.com/fundraiser/phillipmaderia/bostonmarathon

and/or

https://www.paypal.com/us/cgi-bin/webscr?cmd=_flow&SESSION=CMIneR28TBkOSXB3zSle1SUfV4yrVdhNd1M3VFLlB0idocEcpKrH-SWLqne&dispatch=5885d80a13c0db1f8e263663d3faee8d569c51c61ce57e9125f793ea33988004

Or share Wlder’s book with a kiddo you know battling a rare disease, so show them you care on this Globally recognized day.

http://shoptogive.wylderjames.com/

Let’s continue to remember why we are supporting awareness for Niemann Pick A and Rare diseases …. our littles.  Wylder James, you are loved and you are missed littlest!  When we all team up to “remember always” we can work together on this day (the 28th), and all days to come, by coming together to raise awareness and make a difference for diseases that do not get enough attention, determined to make a difference.  Unity creates hope always!

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Let us remember always … those who  lost there lives to rare disease and Niemann Pick A, and those littlest ones who are currently persevering against Niemann Pick A (by clicking on the photos you can follow their blogs).

Meet Quinn

quinn

Meet Amber

amber

Together we can all make a difference for our little ones that mean the world to us.  Wylder James, we continue to believe in you and we love and miss you .. and we promise to make a difference because of you.  xxoo

 

 

 

Comments

  1. Cathy Johnson says:

    I just know that Wylder Nation will be in top form on Rare Disease Day – we have much work to do! :) xoxo

  2. what a beautiful post Shannon. I cannot wait to see all the fun photos from your trip to the hospital, that is a wonderful idea! xoxo, Chelsea

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