Highlights eNewsletter-February 2016 Mobile Friendly 

Highlights eNewsletter - February 2016
Welcome to the February Issue of Highlights!
You will notice a new look and feel starting with this issue as we  have converted our eNewsletter to a new mobile friendly template.  Did you know that 50% of our membership are viewing our eNewsletter from a mobile device?  Our previous versions were not formatted to scale on a mobile device, therefore we have upgraded the template so you can view Highlights anywhere, anytime from any device!  We appreciate our Members, all of your support year-round, and Thank You for being a part of the Cyclic Vomiting Syndrome Association!  

Highlights eNewsletter created by: Tom and Shelley Kupetis 

CVS International Awareness 
Day T-Shirts - Fundraiser
Campaign Host:  Debbie Conklyn
Date Extended!   

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! 


CVSA 12th International Adult & Family Conference
June 24-26, 2016 - Milwaukee, Wisconsin 
*Early Bird Rates End On February 29th* 

Location:  Sheraton Brookfield - Milwaukee, Wisconsin
Hotel Rooms:  CVSA Block priced at $95.00 per night 

Members:  Early Bird Rates! 
$125.00 Individual / $200.00 Couple / $225.00 Family 

Non-Members:  Early Bird Rates! 
$200.00 Individual / $275.00 Couple / $300.00 Family 

* Please Note *  Rates will increase by $50.00 on March 1, 2016 

Please visit the CVSA Website for more information including: the agenda, fees, and hotel accommodations at the Sheraton Brookfield.  

Register on-line today!  

Any Questions?  Please contact the CVSA Office. 
Ron Novak at (414) 342-7880  

January 2016 

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! 
'Paint & Sip Night' - Fundraiser
Hosted By:  Pat Bocek  
January 2016

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!   
'Coins for Hope' - Fundraiser
Hosted By:  Kyla Hines - 8th Grader 
January 2016 

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! 

CVSA Press Release Announcing
CVS International Awareness Day
Press Release Date:  February 20, 2016 
Help Support Us and Spread the Word! 
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:   

CVS International Awareness Day
Saturday, March 5, 2016 

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!  

CVSA 10th Annual 
'Run for the Bucket' 5K Event 
Saturday, June 4, 2016 
Waukesha, Wisconsin 

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:  cvswalkwi@yahoo.com 
CVSA Resources Are Available to You! 

Website:  cvsaonline.org

* CVSA Blog
* CVSA Facebook Page
* CVSA College Facebook Page
* CVSA Message Board
* Media Links 
* 2014 CVSA Conference Power Points
* Support Group Phone Calls
* Stories of Hope! 

Support Group Conference Phone Call - 2nd Monday of each month 
Host:  Cricket in North Carolina
Time:  7pm ET/ 6pm Central / 5pm Mountain / 4pm Pacific
Duration:  1 hour 
Phone # 1-800-977-8002
Participant Code #5429554 #

Any questions?  
Feel free to contact Ruth Novak
CVSA Office:  414-342-7880

Visit our Facebook Page and Like Us Today! 
Facebook - 
Cyclic Vomiting Syndrome Association
Likes to Date:  #8,467
Code 'V' Newsletter - 
Next Issue - Spring 2016
CVSA Members Only Benefit 
(3) Yearly Publications


* Kathleen Adams - President
* Jennifer Dhuse
* Ron Novak
* Connie Hill 
* Debbie Conklyn 
* Mary Rachael Lovett-Barr
* Robin Raskin
* Anthony & Tara Destribats
* Tom & Shelley Kupetis 

* CVSA Program Director * - Ruth Novak 


CVSA | P.O. Box 925 Elkhorn, WI 53121 | 414-342-7880 | cvsa@cvsaonline.org