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  <p>Organizational News</p>
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        <p><strong>January 2012</strong></p>
        
        <p> It is a great honor to start  the new year by introducing the 2012 Mastokids' Board of Directors and  Officers! These individuals generously sacrifice their time and energy to serve  our organization, our members, the entire mastocytosis community, and of  course, all of our wonderful children!
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        <p>The members of our Board of  Directors are Cris Richardson, Dawn Aldrich, Tina Propes, Amy Riviello, and  Kristy Kowalik.        </p>
        <p>Officers for 2012 are Cris  Richardson (President), Dawn Aldrich (Secretary), Amber Pittman (Treasurer),  Heather Scheirmann (VP of Fundraising), Kristy Kowalik (VP of Research),  Chelsea Kittleson (VP of International Relations), Tina Propes (VP of Awareness  and Print Materials Coordinator), Leslie Golde (Support Group Coordinator), Amy  Riviello (Member Support Coordinator), and Amista Lipot (Birthday Club  Coordinator).</p>
        <p> Many thanks to each of these  ladies for serving. We know that exciting things are going to happen this year!  Check back often for updates to our site and to see what&rsquo;s happening at  Mastokids!<br />
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        <p><strong>February Update 2009</strong></p>
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    <p>Mastokids was proud to partner with NORD to celebrate Rare  Disease Day this month.&nbsp; Many of our  members had proclamations drafted in their state, letters published in their  local papers or raised awareness about pediatric mastocytosis and rare diseases  in many other ways.&nbsp; Mastokids was proud  to unveil the video created to display on NORDs website about pediatric  mastocytosis.&nbsp; Thanks to all of you who  were involved in raising awareness in conjunction with Rare Disease Day this  month. Please check our awareness page soon to see all of the wonderful things  that our members did to celebrate!</p>
    <p><br />
      Our cookbooks have gone to press.&nbsp; We are excited about the opportunity to  feature recipes from our Mastomoms and families in this special cookbook.&nbsp; Look for information soon about how you can  purchase your MKO cookbook and help raise money for our organization in the  process.</p>
    <p><br />
      Our Facebook&nbsp;  Support-a-Cause continues to grow.&nbsp;  We have, at this time,&nbsp; we have  over&nbsp; 1,300 people who have joined our  cause.&nbsp; This has been a great way to  spread awareness for MKO.&nbsp; We have also  raised $220 from donations that have been generated from our Facebook  Support-a-Cause.&nbsp; All donations will go  to our general fund for MKO.<br />
      Thanks for all that each of you do to promote awareness of  Pediatric Mastocytosis!</p>
    <p><br />
      Tina Propes, MKO President</p>
  <strong>January Update 2009</strong></div>
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<p>January is the start of a new year here at MKO.&nbsp; The Board of   Directors welcomed two new members, Barbara Dolan and Cris Richardson.&nbsp; These   are new faces on the Board of Directors, but not new to MKO.&nbsp; Both Cris and   Barbara held officer positions last year and were a great addition to the MKO   team.&nbsp; I also rejoined the board to start serving my second term.&nbsp; 

<p>At the beginning of the month, we met to appoint our officers   for the year.&nbsp; We are pleased to welcome back most of our officers from last   year and to welcome a new face.&nbsp; Your MKO officers for 2009 are as   follows:</p>
<p>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;   President&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; Tina Propes</p>
<p>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; Co-VPs of   Fundraising&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; Cris Richardson and Amber   Pittman</p>
<p>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; VP of   Awareness&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; Amber Pittman</p>
<p>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; VP of   Research&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; Kristy   Tootle</p>
<p>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; VP of International   Relations&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; Caron Billings</p>
<p>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;   Secretary&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; Dawn   Aldrich</p>
<p>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;   Treasurer&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; Barbara   Dolan</p>
<p>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; Support Group   Coordinator&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; &nbsp;&nbsp;&nbsp;&nbsp; Julie Rouillard</p>
<p>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; Membership Support Coordinator&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;   Cris Richardson</p>
<p>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; Print Materials   Coordinator&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; Tina Propes</p>
<p>Please feel free to contact any of us if the need   arises.</p>
<p>Many exciting opportunities have presented themselves to MKO   this month.&nbsp; We are currently creating a &ldquo;Support-a-Cause&rdquo; account for all of   you Facebook users.&nbsp; We will give you the details when our application has been   approved by Facebook and our account is active.&nbsp; We look forward to all of you   &ldquo;facebook-ers&rdquo; supporting our cause and raising awareness for   MKO!</p>
<p>MKO has partnered with NORD (National Organization for Rare   Diseases) for Rare Disease Day.&nbsp; This day&nbsp; was observed for the first time last   year in Europe and was a great success.&nbsp; Several heads of state, First Ladies,   and members of royal families participated in special activities on that day.&nbsp;   Rare Disease Day will be held on February 28th.&nbsp;&nbsp; On this day,   millions of people around the world will observe the 2nd Annual Rare   Disease Day to raise awareness of these diseases and the special challenges   encountered by those affected. Please look for more information on Rare Disease   Day on the website and member&rsquo;s email.</p>
<p>MKO will be offering new products in the near future.&nbsp; We are   excited about these additions and hope to keep adding new products throughout   the year.&nbsp; One of the new products coming in the next few months will be our   cookbooks.&nbsp; We had over 500 recipes submitted!&nbsp; This was a huge undertaking by   our Cookbook committee.&nbsp; I want to thank them for their time and dedication to   this project.&nbsp; I&rsquo;m sure that the cookbook will be a great success!&nbsp; We will pass   along the details for ordering as soon as our cookbooks arrive within the next   month or two.</p>
<p>Thanks again to each of you for your continued support of   MKO.&nbsp; This organization could not be a success without you!&nbsp; Please visit our   website frequently for updates or look for them on your member&rsquo;s email. </p>
<p>If you are not currently a member of MKO, we&rsquo;d love to have   you!&nbsp; Please visit the membership form section of the website to see how you can   join!</p>
<p>Tina Propes, President </p>
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<div class="subheader">June Update</div>
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<p>We have had several new members join us this month and we welcome you to our MKO family.  We truly appreciate the support of our new members as well as the continued support of those of you who have been with us at MKO.
<p>     Our chats continue to be a great way to get together and talk about issues that are relevant to each of us.  This month’s chat topic “ Siblings of Mastokids” was no exception.  I enjoyed hearing insight into the issues that face not only us as parents, but the siblings of our mastokids. We had a good turn out at the chat and I’m looking forward to our July topic “Releasing our Mastokids into the World”.  We will chat about everything from hiring a babysitter to sending them to camp.  As the mom of a soon to be Kindergartener, this topic has a lot of relevance to my family.
<p>     Our fundraiser is continuing.  We hope that each of you considers participating in this effort.  Funds raised will be used to cover expenses for our appearance at the AAP conference in Boston this October.  There are many related costs to this opportunity including printing of pamphlets to pass out to doctors, required rentals for the AAP (carpet, table, etc), decorations for our booth and the booth rental itself.  This is a tremendous opportunity for MKO.  The attendance of pediatricians and medical personnel last year was around 6000 people.  We will have the opportunity to possibly spread awareness of mastocytosis to 6000 medical personnel in one place at this conference.  There is not another opportunity like this for us.  We also plan to speak with pharmaceutical companies about the special needs of our children in an effort to make life easier for them.  To do this, we will need your support.  Please consider making a donation to MKO and participating in our fundraiser to help raise the funds for this wonderful opportunity.
<p>     With July brings our annual MKO membership drive.  Please watch for important announcements on our website and Member’s email about the membership drive.
<p>     Thanks, as always for your support of MKO!  We couldn’t do it without you!

<p>     Tina Propes, MKO President


<div class="subheader">May Update</div>

<p>     2008 has brought about great growth for MKO and May has been no exception.  New members have joined us and new programs have begun.
<p>     Another big welcome to our seven new members who joined us this month.  We appreciate your support of MKO and are glad to have you!  
<p>     Our Mom-to-Mom program kicked off this month.  It is a great opportunity to be paired with someone in like circumstances to exchange information and support.  If you are a member of MKO and have not joined the Mom-to-Mom program, you are missing out on a wonderful opportunity to get to know someone better.  It is also a great support system for our members.
<p>     Our fundraiser to support our AAP appearance is still in swing.  Take a look at the Fundraising Section for our current fundraiser and for additional ways that you can help MKO raise some much needed funds.  Our fundraising committee has made it really easy for us to participate.  Just print the letters and send!  Any funds raised will be placed in our general fund and be used for the AAP and related expenses (printing, required rentals, etc…)
<p>     The MKO Board and Officers are excited about the new offering s here at MKO.  If you haven’t joined MKO, please consider doing so.  MKO membership offers many additional opportunities for support and many programs created to help its members.  We’d love to have you!
<p>     Tina Propes, MKO President

<div class="subheader">April Update</div>

<p>  April has been an exciting month of growth and opportunity for MKO.  We’ve had many new members join us during the past few months and I would like to extend another welcome to you as well as thank you for your support of this organization.<p> 

<p> April began with a new product to offer.  Our car magnets have been a popular item in the past and our new ones are no exception!  Our newly designed car magnets have been a great seller since we got them in stock at the beginning of the month.  We do have more available, so if you would like one, please send an email to orders@mastokids.org.<p> 

<p> We were excited to announce our plans to attend the American Academy of Pediatrics convention in October.  We are excited at this wonderful opportunity to speak with doctors and pharmaceutical companies.  We hope to spread awareness of pediatric mastocytosis by talking with doctors and handing out information packets for both the physicians and patients that they might encounter.<p>   

<p> We have kicked off a fundraiser to help with the costs of both the booth at the AAP and the associated printing costs for the informational packets.  Please visit our Fundraising section of the website for additional information.  A big thanks to those of you who have worked hard on creating opportunities for us to help MKO. <p>  

<p> In addition to the fundraiser, you can help MKO raise funds by becoming a member of iGive.  IGive is an easy way for friends and family of our mastokids to help this wonderful organization.  Complete information on iGive can be found on in the Fundraiser section of the website.<p> 

<p> Our Membership Coordinator has worked hard on our Monthly Member’s Chats.  We have had many great topics.  I’ve enjoyed the opportunity to talk in “real time” to other moms each month.  Cris is also working hard to develop new opportunities for our members, including our new Mom-to-Mom program that will be kicking off soon.  <p> 

<p> Julie, our Support Group Coordinator, has had the task of creating our new support groups.  The support groups are now updated and up and running.  If you would like to find someone in your area, or area of the country, please visit the Support Group section of the website.  We here at MKO are excited about the newly forming support groups and the opportunities that these groups will offer to those who would like to “meet” with others with mastokids.<p> 

<p> Our Adopt-a-Mom area has also been updated with moms who would love to help those of you with questions or are new to MKO.  The Adopt-a-Moms will  also provide parents of newly diagnosed mastokids another means of support.<p> 

<p> Wow!!  As you can see, we have been really busy here at MKO!  We are excited about the opportunities that have come our way in the past few months.  If you are not currently a member of MKO, please consider joining!  You can find our membership form in the Membership section of the website.  We’d love to have you!<p> 

<p> Tina Propes, MKO President</p>

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<div class="subheader">January Update</div>

<p>     The MKO Board of Directors is excited about the upcoming year.  We met earlier in the month to make plans for 2008.  Christi Moczygemba and I were joined by our 3 new board members this year.  Our new board members this year are Dawn Aldrich, Julie Rouillard and Amber Pittman. We have many exciting changes that our members will see in the upcoming months. Watch your email for updates!<p> 

     <p> We have the help of several volunteers who will help to make this a great year at MKO.  Nancy Gould will continue to answer your medical questions and help us with medical issues.  Nicole Palmer will continue to serve as our VP of Fundraising.  Caron Billings will also continue to help MKO this year as our VP of International Relations. Barbara Dolan will be our treasurer for this year. Cris Richardson will be joining us as our Membership Support Coordinator. Thanks to all of you who have offered to volunteer your time to Mastokids.<p> 

    <p>  Don’t worry!  There are many ways for you to get involved too.  As we form committees, we will need members to volunteer to help on these committees.  Your continued participation on the forums is also a great way to help MKO.  Watch for information from our Membership Support Coordinator on these upcoming <p> 

     <p> Beginning in February, we will hold monthly meetings in the chat room.  These meetings will be held on the Third Thursday of each month beginning at 10pm Eastern Time.  Please make plans to join your board of directors and officers to chat.
As many of you know, our website was briefly down for a few days this month.  This was due to technical difficulties with our domain company.  We are up and running again.  Please be aware that there may be additional outages in the future as we work to permanently resolve this issue.<p> 

     <p> In an effort to improve the communication to our members and website users, we will be working on updating the MKO website.  Keep checking back for updates to the website.<p> 

     <p> Welcome to those of you who have joined us as members at MKO in January.  We are glad to have you. <p>  

     <p> For those of you who may not be Mastokids.org members, please consider joining us.  There are many benefits to becoming a member of MKO.  Please visit the Membership Form tab on the website for details.<p> 


      <p> Tina Propes, President
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