Awareness

Rare Disease Day 2012

We at Mastokids are proud to partner with NORD in raising awareness for Rare Disease Day. Mastokids, along with the Rare Disease Day Committee, are also proud to announce this year's activities to celebrate Rare Disease Day! We are very excited about the activities planned to celebrate this special day and the month that leads up to it. So, without further ado.......

Saturday, February 25th is Polka Dot Day! On this day, we encourage your mastokid and your entire family to deck out in dots!

Sunday, February 26th is Polka Dot Party Day! What better way to celebrate than have a meal fit for a Polka Dot Prince or Princess! On this day, create a polka dotted meal, food or treat. During the month of February, we will be collecting polka dotted recipes. We will share these with the group as our Polka Dot Party approaches. If you have a fun food that sports polka dots, please email your recipes to awareness@mastokids.org.

Monday, February 27th is Awareness Day! On this day we encourage you to raise awareness for pediatric mastocytosis. You can hand out a brochure, pen or Spots Happen card to a friend, neighbor or colleague. Another idea is to give an awareness ribbon to your child's teacher, school nurse or caregiver. This is a great way to raise awareness for a rare disease close to our hearts!

Tuesday, February 28th is Mastokid Day! For this day, we encourage you to celebrate your mastokid! Afterall, they are the reason that we are a part of this special group! Some suggestions are to fix their favorite meal for dinner, play their favorite game, read their favorite book, etc... We also encourage you to take this opportunity to explain RDD to your mastokid on their level and explain how they fit in to RDD. With the recent discussion about preparing our mastokids, this might be a great time to discuss mastocytosis with them (explain on their level) so they can have that information if needed to explain to a friend, etc... Point out to your special mastokid that even though they don't see other mastokids, this is a special day for all of them and there are others out there celebrating too!

And for the grand finale.....

On Wednesday, February 29th we will join with the world in celebrating Rare Disease Day in honor of our mastokids! And....what better way to celebrate than with Balloon Day! On balloon day, we encourage each of you to show your support with balloons. So, grab some purple, red and white balloons in honor of MKO and let's celebrate! To make this day a real celebration of awareness, we are offering each of you who are willing to participate a great way to raise awareness. To those willing to purchase balloons (at the location of your choice) MKO will donate to you 5 Spots Happen cards with a special Rare Disease Day message on the back. Attach these cards to your balloons and drop them off at a location of your choice to raise awareness. Some suggestions are...your child's school or daycare, a doctor's office, fire station, or local business. To receive your special Spots Happen cards, please email your address to awareness@mastokids.org by Wednesday, February 15th to ensure delivery. Of course, there are other ways to join in the Balloon Day celebration and we encourage you to use your creativity!

We also have lots of great things going on for the month of February! We encourage each of you to....

- use social media (FB/Twitter/etc...) to raise awareness for RDD, Pediatric Mastocytosis and MKO. You can find the RDD logo to use as your profile picture at http://www.facebook.com/photo.php?fbid=10150494454801470&set=pu.195074376469&type=1&theater. You can find a RDD countdown badge at http://rarediseaseday.us/take-action-now/get-your-rdd-countdown-badge/.
- like the Rare Disease Day (http://www.facebook.com/rarediseaseday) page on Facebook and join our MKO Support-a-Cause page (http://www.causes.com/causes/213602-mastokids-org-raising-children-and-raising-awareness). We will be using our Support-a-Cause page throughout the month to raise awareness and encourage you to visit often, comment about your celebrations and post pictures of the fun you have had celebrating this special day!
-to wear your MKO awareness ribbons each day this month. If you need a replacement ribbon or just want to order extra, please visit our online store at http://mastokids.org/store/index.php?storeid=mastokids. You can also find the link to the store on our website.
- to add a RDD signature on your email. You can see an example at the end of this message. Please feel free to use this one or design your own!
- to visit NORD's RDD page. There is a lot of great information and great ideas on ways to join in with NORD to celebrate. You can visit the RDD website at http://rarediseaseday.us. NORD has many activities planned. Over the next few weeks I will highlight many of these activities for you.

February is a great time to celebrate! We would love to hear and see your Rare Disease Day celebrations! Please send in pictures of your RDD activities to awareness@mastokids.org. We would love to post them on the Awareness page of our website.

We also want to encourage each of you to visit the forums and comment how you are celebrating RDD. We will set up a special RDD thread for your comments. This is a great way to spread awareness to those visiting the forums and to share with each of us the fun you've had celebrating this special time!

Additionally, MKO will be offering an additional 10% discount on pens, notepads, car magnets and awareness ribbons in the MKO store. For those of you who are MKO members, this is in addition to your 25% member's discount! It is a great time to stock up on these items to use for Awareness Day! To ensure delivery by Awareness Day, please place your order by February 15th.

We are excited to celebrate with each of you this month! Look for reminders and additional information throughout the month of February!

Remember....

Alone we are Rare, Together we are Strong!

The RDD Committee

Tina Propes, MKO
VP of Awareness

Are you AWARE that you can make a difference? Are you AWARE that you might be the only voice for your child? Are you AWARE that every little bit helps? Are you AWARE that you can be a bright SPOT in the face of this rare disease called pediatric mastocytosis?

Mastokids was founded by parents of children with pediatric mastocytosis with the supreme goal in mind to support children and their parents faced with this diagnosis. One key way to give support is by making others AWARE of this disease our children face. Let’s help continue in that spirit by spreading awareness of mastocytosis.
Over the last several years, Mastokids has been working hard in this area.

In October 2008, we participated in the American Academy of Pediatrics (AAP) Convention in Boston. As a booth exhibitor, we handed out important medical literature, shared a video created to highlight Mastocytosis and our work at Mastokids, displayed a wall of photos to help physicians “SPOT” Mastocytosis in an exam, and also began to establish a physician database. Key to our success with this endeavor was the fact that there were over 6000 physicians in attendance. Mastokids’ Board of Directors has again committed to returning to the AAP Convention, October 2010 in California.
In 2009, Mastokids partnered with NORD National Organization of Rare Disorders) as a result of communications that took place at the AAP convention. We were able to participate with NORD in the first annual Rare Disease Day held on the last day of February each year. We will continue to support spreading awareness of pediatric Mastocytosis in this way.
Are you on Facebook? Well… we are! Join us on our Causes page, and help us continue to spread awareness. We currently have a community of over 2500 members. We’d love for you to join us there. http://www.causes.com/causes/213602-mastokids-org-raising-children-and-raising-awareness/actions .

There are many ways that you as individuals can help us spread awareness as well.
Researching mastocytosis requires raising funds, but to support fundraising activities, we must first raise the level of awareness of this disease. Everyone can contribute to raising awareness — at least on some level. Basically, be creative. Begin by looking at the potential for raising awareness in your daily activities.

Visit our store where you can find awareness ribbons, car decals, t-shirts, pens and more…All ways you can make others aware. Click here to visit our store.
At the start of each school year, send a letter to teachers and other parents informing them of your child’s condition. Click link for an example letter.
Host an awareness event (that could also be a fundraiser) where you share with others about Mastocytosis (for e.g. birthday parties where donations are sent to Mastokids in lieu of presents, garage sales, lemonade stands, etc. All ways that promote awareness as well as donations to Mastokids)
Order some informational materials (brochures, “Spots Happen” cards, pens, etc.) to be shared with your physician’s office, so that they can be further aware of this disease, and able to share with future patients with mastocytosis. Click here to visit our store.

Be creative! There are many ways that you as an individual can help spread awareness.

Listed below are some ideas people have had for raising awareness. If you have an idea that you would like to share, or if you would like to know more about ways you can get involved, please send a message to awareness@mastokids.org.