Mastokids.Org

[audreysmom]

Last year, Mastokids was glad to partner with NORD, in their first annual Rare Disease Day (RDD) in the United States. Rare Disease Day, February 28, 2010

Alone we are RARE. Together we are STRONG!

Last year was the first year that the National Organization of Rare Disorders (NORD) launched Rare Disease Day in the United States. Marking the last day in February of each year as the official day, NORD sought to bring attention to this day all across the United States, and to bring attention to all types of rare disorders.

We at Mastokids made the decision last year to officially partner with NORD in promoting this day. We asked you to help bring attention to pediatric mastocytosis…and we were more than pleased with your participation. It was so exciting to see the copies of newspaper articles, and to see the declarations made by governors of your states and mayors of your hometowns. AND though we didn’t win the video contest (cannot see how we didn’t), we were thrilled with the video that we submitted to the Rare Disease Day website highlighting pediatric mastocytosis!

In 2009, great successes were made in spreading awareness about rare disorders.

More than 200 organizations, agencies, and companies signed on as Rare Disease Day Partners
Governors of 39 states issued proclamations
Many websites, newspapers, and other media published editorials, letters to the editor, stories, and blogs
Companies hosted events such as “Lunch & Learns” for their employees
Patient organizations organized networking events
This year Mastokids is again partnering with NORD in helping to meet the goals of Rare Disease Day 2010! NORD’s goals and plans for 2010 include the following:

Extensive media coverage
Social networking blitz
Creating a Rare Disease Physician Database
Sharing patient stories, videos, photos, and blogs
Honoring researchers through the Hall of Fame
Joining hands with others worldwide

What we at Mastokids are asking you to do is to consider ways that we can help spread the word about mastocytosis. Over the next few weeks, we will be sharing ideas with you on ways that you can be of help, and we ask that you share your ideas with us. We have many wonderful social network outlets in which to reach many people, and we will be focusing on these things to get the word out about mastocytosis. We are a wonderful team! We thank you for your enthusiasm and your participation in this! For more information, go to www.rarediseaseday.org!

Tina Propes, Julie Rouillard, Cris Richardson, Barbara Dolan and Amber Pittman

Board of Directors, Mastokids



(P.S. Very excited to see that many of you are already doing these things mentioned...keep up the good work! As always, please feel free to share your ideas with us over the next few weeks and we will do the same!)

[JulieR]

Hi everyone I just wanted to let people know what my older kids,14 and 13, are doing to help support their little brother and Mastokids. My son is going to put things that are going on and things we are doing on his Facebook page so his family and friends know about RRD and Pediatric Mastocytosis. My daughter made a power point about Pediatric Mastocytisis that she is going to share with her class and talk about RRD.
They both keep asking what else they can do so we are going to sit down and brain storm... I think it's great that they want to help speed awareness for both RRD and Mastokids.
Julie

[Peanut_07]

hello, I have sent out a text message to my friends and family letting them know about RRD and asking them to wear polka dots firday the 19 and february the 28th to support my daughter as well as others for mastocytosis, tomorrow I will be sending out a forward text to spread the word about mastocytosis and this site....
I have also made my three children a shirt with red and purple spots on the front saying 'i support mastocytosis' and on the back of my older two children 'i love my lil sis spots' and on my youngest 'i love my spots'
I have also asked the reporter of our local newspaper to put in an article on RRD I had done that last year, this year I am hoping for a bigger spot in the newspaper rather than letter to the editor...
I have nto had time with schooling and cleaning and taking care of chidlre, but I had thought about handing out papers about RRD and Mastocytosis at local stores such as walmart, safeway etc..
I was wondering if we could nto somehow get a cellular company to donate money for forward messages (probably wont happen next year) what do you all think?

[audreysmom]

Thanks for all you are doing. Please send me photos of your polka dots. I love all you are doing to support RDD.

Send photos to awareness@mastokids.org. Thanks, Amber Pittman

[Peanut_07]

I have to take pictures tomorrow of her in her polka dots, I only took pictures on my phone to send out mass text messages to spread the word out.. I have also used window paint on my van windows.. saying rare disease day and spots happen and mastokids.org I am super excited to spread the word about RRD.. all three of my kids were proud to wear the shirts today, I have also made one for myself and a hat for my boyfriend, my sister and cousin also want a shirt done as well!! I will send some pics as soon as I get them taken and uploaded..

[SpotsMe]

Observing Rare Disease Day today and thinking of all of you here!
_________________
Tina
Suwanee, GA