CVSA Highlights eNewsletter-May 2016 Mobile Friendly 

Highlights eNewsletter - May 2016
Welcome to the May Issue of Highlights!
Happy May and Mother's Day to all of the Mom's!  

Next month we are holding our 10th Annual 'Run for the Bucket' 5K Event on June 4th.  If you haven't signed up yet please visit our website and join us in Waukesha, Wisconsin for a fabulous 5K Run/Walk Event! 

Our 12th International Adult and Family Conference is coming up then the weekend of June 24-26th.  The conference will be hosted in Milwaukee, Wisconsin at the Brookfield Sheraton Hotel. We hope you can attend our upcoming events, and look forward to seeing all of you next month!  

Enjoy this Spring issue of Highlights!  
Thank you to all of our Members for being a part of the Cyclic Vomiting Syndrome Association! 

Highlights eNewsletter created by: Tom and Shelley Kupetis 



P.O. Box 270341
Milwaukee, WI 53227
(414) 342-7880

Amanda Click is Raising Awareness of CVS! 
Event Took Place: March 26, 2016 
c.a.u.s.e. Event - Lafayette, Indiana

Thank you Amanda for setting up a booth and raising awareness of Cyclic Vomiting Syndrome in your community. The c.a.u.s.e. Event provided information to the public about a variety of illnesses.  Amanda's 6 year-old son, Cayden Weaver, who is in kindergarten has been battling CVS for many years. The event consisted of:  6 different booths, live bands, and an auction. Amanda passed out CVSA Brochures, and talked with others about what CVS was.  We appreciate your time in spreading the word about CVS and educating the public!  

Shout Out to Colleen Rice! 
Mother's Day T-Shirt Fundraiser - April 2016 

Thank you Colleen for supporting the CVSA.  $103.00 was raised in this T-Shirt sale and will be used to help fund  help fund the Adult Guidelines Project for diagnosing and treating CVS! 

Shout Out To: Network for Good  
April 2016 
We received a check for $436.80! 
Thank You for designating the CVSA as your Charity! 

Painting with a Twist Fundraiser a Success!  
Hosted By:  Tiffany Sharpe  of  Trinity's Troops
Event Took Place:  Saturday, April 16, 2016
Location:  Lakeland, Florida
Funds Raised:  $ $297.50

Thank you Tiffany and Trinity for hosting this event!  17 participated in Painting with a Twist and raised $297.50.  Tiffany was able to talk a bit about our organization and their journey with CVS. Everyone had a great time!  
New Book to be Released by Tricia Andersen this Summer! 
Hard Drive / Breaking the Cycle 
Release Date - June 2, 2016 

** More Details to Come ** 

NORD and Trio Health to Provide Real-World Insights to Improve Access and Quality of Care for More Than 7,000 Rare Diseases

The National Organization for Rare Disorders (NORD), the country's leading voice for the rare disease patient community, is collaborating with Trio Health to leverage its innovative platform to monitor real-world patients. This unique insight will allow physicians, drug manufacturers, regulatory agencies and advocacy organizations to better serve and improve patient outcomes.

"If an FDA-approved treatment exists, patients deserve to have access to it," said Peter L. Saltonstall, president and CEO of NORD. "No one is doing anything like this to serve the 1 in 10 Americans with rare diseases and we are thrilled to partner with Trio Health as part of NORD's advocacy and patient assistance efforts."

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

Visit our site and sign-up today!  

Please join us!  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 attend.  Tell your friends and family to mark their calendars, and register on-line with us today!  
Special pricing is available for teams of 10 or more individuals so please contact us if you would like to sign up as a Team. Awards and prizes will be presented after the 5K Run/Walk Event.  

Raffle Prizes Include:  
Green Bay Packer Team Football
Summerfest Tickets
Complimentary 1-Night hotel stay at the Sheraton Milwaukee Hotel
90 Day Membership at the Wisconsin Athletic Club
Discovery World Tickets
Milwaukee Admiral Tickets
Texas Roadhouse Meal for 2 

If you are not able to attend the event and would like to make a donation to the CVSA, please contact our office or visit our website to find out how you can make a difference.  A portion of the event proceeds benefits medical research at the Medical College of Wisconsin in the areas of causes, diagnosis and treatment of Cyclic Vomiting Syndrome.  Thank you! 

Questions about this event? 
Please contact our Fundraiser Chair:  Debbie Conklyn 
Email address: 
CVSA Support Group Phone Calls 
June 11 & 18 - Save the Date and Participate!
Host:  Dana in Oregon 

CVSA 12th International Adult & Family Conference
Date:  June 24-26, 2016 
Location: Sheraton Milwaukee - Brookfield, Wisconsin 

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

$175.00 Individual / $250.00 Couple / $275.00 Family 

$250.00 Individual / $325.00 Couple / $350.00 Family 

Please visit the CVSA Website for more information including: 
All Fees / Members and Non-Members 
Weekend Agenda - Friday, Saturday and Sunday 
Hotel Accommodations

Register On-Line Today! 
We look forward to seeing all of you, and our new members in June! 

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

Top 10  Reasons Why You Should Attend 
the CVSA Conference - June 2016 

#10 - Attend the ComedySportz Show - Fun, Live Entertainment
  #9 - Raffle Prizes - Win CVSA Memberships, Gift Cards and More! 
  #8 - Childcare is Available
  #7 - Meet our Program Director and Board of Directors
  #6 - Keynote Speakers - Hear their Personal Stories of Hope
  #5 - Network - Connect with other Individuals/Families at our Meet & Greet. 
 Share stories, experiences, and Build Friendships
  #4 - Lectures on new Medical Research, Disability and ER Visits
  #3 - Educate Yourself, Get Involved, and Aspire to Help Others
  #2 - Speed Date with the Doctors - Meet the Experts

And, the #1 Reason you should attend the CVSA In-Person Conference is....


Join us the weekend of June 24-26, 2016.  We would love for you to become a part of the CVSA Community where you can meet others who face the same challenges as you do.  Our Meet and Greet will have tables set up by region this year to give everyone a chance to talk to others who may live in your area.  It is going to be a fabulous, informative weekend for all so don't miss out! 

Resources and Support Groups are Available to Help!  

The Rare Diseases Conference | 19 - 22 October | Cape Town, South Africa.

Registration is now open for RareX 2016: the first Rare Diseases Conference to be held on the African continent. RareX 2016 will be held hosted in Cape Town, South Africa at the Spier Conference Centre from 19 to 22 October and is proudly hosted by Rare Diseases South Africa (RDSA) and the International Conference on Rare Diseases and Orphan Drugs.

If you're in health care, research, academia, policy or industry, this is  a conference you'll want to attend. If you represent a patient organization, a regulatory authority or a health association, you need to be here. And if you are a rare disease patient or family member or caregiver, join the community at RareX 2016.

The conference will be a global forum for all stakeholders in the field of rare diseases to participate in open discussion, enhance models of best practice and share specialist knowledge about rare diseases and orphan drugs. Incorporating the 11th annual International Conference on Rare Diseases and Orphan Drugs (ICORD) for 2016, RareX will present an extended program to incorporate patients, their families and caregivers as well as support groups and minority groups within the rare disease community.

CVSA Resources Are Available to You - 


* 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 - Program Director
CVSA Office:  414-342-7880

Visit our Facebook Page and Like Us Today! 
Facebook - 
Cyclic Vomiting Syndrome Association
Likes to Date:  8,817 
* Shop Amazon Smile * 

Please sign-up today to list CVSA as your charity of choice. 
Here you may list CVSA as your preferred charity.  In return .5% of all proceeds will be donated back to our organization.  It just takes a moment of your time! 

Please share this website with your family and friends, as it's a wonderful way to support the CVSA all year long.  

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

* CVSA Program Director * - Ruth Novak 

Code 'V' Newsletter - Mailed out to Members
Arriving in your Mailbox this month - May 2016 
(3) publications of our newsletter are mailed out each year 

* If you would like to become a Member of the CVSA, please contact our Program Director - Ruth Novak * 


CVSA | P.O. Box 270341 Milwaukee, WI 53227 | 414-342-7880 |