February 5th will now be your last day to purchase a 

CVS International Awareness Day T-Shirt! 

T-Shirts Sold:  103 

Funds Raised:  $1130.00

Show your spirit and order a t-shirt for yourself, family and friends!  

Raise awareness around the world today! 

Kristina Kruse, of Charleston, Indiana is 28 years old, and has been battling CVS for almost 24 years.   Kristina was diagnosed with CVS in 2011.  After seeing an episode of The Doctors featuring Chandra Wilson talking about the struggles her daughter has had with CVS, she vowed to raise awareness of  Cyclic Vomiting Syndrome.

Kristina passes out over 100 CVSA Brochures per year wherever she can.  Some of the locations include: d octor's offices,  ER waiting rooms, hands them out personally to nurses and staff, and has even given them to ambulance driver's sitting in parking lots on their break. Kristina's Mother passes out CVSA brochures as well.  "Raising Awareness starts with you, and you can make a huge impact on the campaign.  Alone, we are one, but together, we are many in this fight for better understanding and awareness."  

You can read Kristina's Full Story in the next issue of Code 'V' - Spring 2016  

Thank you Kristina! 

Pat Bocek hosted a night out with friends at Studio Vino  in Loveland, Colorado.  Pat (shown in the top left), was able to raise $160.00 for the CVSA by painting and sipping wine!  

Pat has been suffering from CVS for a number of years, and said her friends are a wonderful support system when episodes hit.  They are a great help to her when her husband travels for work.  Pat was just getting over a 3-day episode on the night of this event, and almost missed out on the fun.  

Thank you Pat for hosting this event at Studio Vino, and for raising funds for the CVSA!   

Hello, my name is Kyla Hines.  I'm an 8th grader at Piedmont IB Open Middle School in Charlotte, North Carolina.  At my school we are doing a community service project where we pick our own fundraiser in our community.  I have the illness CVS, and I wanted to do my community service project on that.  I wanted to ask for permission to do the Coins For Hope F undraiser to raise money for the CVSA.  I want to put out jars around the community named 'Coins for Hope', and plan on telling people about it to raise money for the Association. 

Thank you Kyla for writing to us with your request!  We wish you the best of luck with your 'Coins for Hope' Fundraiser, and thank you for creating inspiration and raising awareness of CVS in your community.  Please keep us posted and we will feature the outcome of your service project in our March issue of Highlights! 

___________________________________________________________________________

Rare Disease Day is Coming Up! 

February 29, 2016

Join the Running for Rare Diseases Team!

For the ninth consecutive year, runners will join together to help raise awareness for rare diseases while fundraising to support the NORD/NIH Undiagnosed Diseases Patient Assistance Program.

The 2016 team is looking for runners to join the Boston, Providence Marathon and half Marathon teams, as well as RARE Community Partners.

Upcoming Cities and Race Dates:

Boston Marathon - April 18, 2016

Providence Marathon and Half Marathon - May 1, 2016

New York City - November 6, 2016

Rare Disease Team Theme:  Patient Voice 

For more information you may visit:   

We need your help!  Please join us in celebrating CVS International Awareness Day on Saturday, March 5th. The CVSA USA/Canada will be joining forces with CVSA Organizations around the world to raise awareness of this rare disease.  We would love for all of you to help promote this day by using social media, contacting newspapers, radio and television stations, medical facilities and even schools to educate others about CVS.  

Please visit our website for more information as we need your support!  Let's do all we can to make a difference in our community to help those who battle CVS around the world!  

UNITED IN THE GLOBAL FIGHT AGAINST CVS!   

SAVE THE DATE!  Our 10th Annual 5K Run/Walk Event is coming up at the beginning of June, and will be held at Frame Park in Waukesha, Wisconsin. This is our largest fundraiser of the year, and we encourage all of you to join us.  Tell your friends and family to 'Save the Date', and look for registration information to come out from the CVSA office soon.  

Questions about this event? 

Please contact our Fundraiser Chair:  Debbie Conklyn 

Email address:  [email protected]