Highlights eNewsletter
June 2015
CVSA
Headquarters


Cyclic Vomiting Syndrome Association
P.O. Box 925
Elkhorn, WI 53121
414-342-7880
Upcoming Events

 

**************************

 

June 10, 2015 - July 10, 2015

Father/Son Hike 

Fundraiser in Colorado.

Hunter Stafford and his Dad will hike 486 Miles 

from Denver to Durango!

 

**************************

 

October 10, 2015 -

Golf for Awareness Event

Tampa, Florida 

Hosted by:

Danielle Campbell

 

***************************

 

March 5, 2016 - 

CVS International 

Awareness Day

 

***************************

June 24-26 2016 - 
Next Summer 
CVSA International Adult & Family Conference 
Milwaukee, Wisconsin  

*****************************
Shout Outs!

*  The River - 95.9 FM Chicago *

The River radio station in Chicago aired a 20-second PSA to advertise the CVSA 5K Run/Walk in Wisconsin the week prior to our event.  Thank you for your support!  

* Tyler Besnoff * 

The final total is in and Tyler raised $3,012.00 from the Stomp Out CVS Walk held in Lancaster, Pennsylvania on April 12th.  Great job Tyler!  Thank you for honoring your younger brother, Aaron, who has CVS, and for donating all of the funds you raised to the CVSA! 

* The Lenhardt Family *

The final total is in and Tyler raised $1318.00 in honor of his younger brother, Mikey, who suffers from CVS.   Thank you Tyler for all of your hard work!   Fantastic job! 

* Tiffany and Trinity Sharpe *
Trinity's Troops! 

Thank you for continuing to host a fundraiser at Sonny's BBQ each month in Lakeland, Florida to benefit the CVSA!  We appreciate all that you do! 

* Monica Roo *

Tupperware Fundraiser in California.
$240.00 was donated to the CVSA.   Thank you Monica for raising awareness and funds for the CVSA! 

* Crystal Ramsey *  

Grateful for the CVSA Website, Crystal, who  works  for AutoZone in Weatherford, Texas recommended the CVSA for a Grant. As a result, AutoZone sent in a check for $1,000.00!  Crystal is a member of the CVSA, and has a 4 year-old daughter who suffers from CVS.  Thank you to AutoZone for your generous contribution! 

________________

CVSA Facebook Page has 129  new 
Likes since 
last month -
We are now at 7,710

Please visit our page,
help us to raise awareness
and 'Like' us today! 

**********
CVSA Membership Info

Check out our membership page to view our benefits!

 

Please contact our office to renew your membership to continue to take advantage of all the benefits CVSA has to offer.  Take a moment to update your address, phone number and email as well.  

 

Reminder - Donate $500.00 to the CVSA or hold a fundraiser that exceeds $500.00, and your annual membership fee will be waived the following year!

________________

Shop Amazon Smile
All Year Long!

Visit:   www.smile.amazon.com to sign up and list CVSA as your charity of choice.  
.5% of all proceeds will be donated back to our organization.  
Share this information with your friends and family as it's a great way to give back to the CVSA!  



Memorials

Our thoughts and prayers go out to the Rita Mowoe family.  She passed away on May 12th.  Rita was a CVSA Volunteer back in the mid 1990's and was diagnosed with CVS in 1994.  Her father designated the CVSA as their charity of choice to honor her memory.  $350.00 in memorials have been contributed to date.  

**********

Barbara Framer - $600.00 in memorial gifts have now come in to honor her memory.  Our thoughts and prayers go out to the Framer family.  

Thank you for thinking of the CVSA as a place to honor your loved ones.  

Reminders 
and
Member Resources

 

Visit our website to stay connected!  

* CVSA Blog 

* CVSA Facebook Page

* CVSA College Facebook Page

* CVSA Message Board

* Support Group Phone Calls

* Media Links

* 2014 CVSA Conference      Power Point Presentations

* Stories of Hope 

Welcome to the June 2015 issue of Highlights!

Summer is here!
It's time to enjoy the sunshine and outdoors.  Individuals and families may enjoy walking/running, swimming, bike riding, hiking, and taking vacations.  It's a wonderful time of year to also enjoy some R&R, and do whatever your heart desires during these next few months while the kids are off of school.  Thank you for continuing to support the CVSA! Enjoy your summer vacation with your loved ones.   

Happy Father's Day! 
Enjoy our latest issue of Highlights!

**** HOPE STARTS HERE ****
Exciting Medical News to report from the CVSA!  
Adult Guidelines for Diagnosing and Treating CVS - May 2015 

We are excited to announce that the CVSA and the American Neurogastroenterology and Motility Society (ANMS) will partner to develop Adult Guidelines!
The ANMS Council has approved the project, and the ANMS will partner with us in the development of formal guidelines for the diagnosis and treatment of CVS in adults.

We are thrilled to finally be embarking on this landmark project that will have a ripple effect worldwide.  The guidelines will make a difference in the lives of many patients, families, and medical professionals.  Having this formal standard of diagnosis and treatment will go a long way to ensure that professionals in the field will be better equipped to care for patients who are still struggling with CVS.  

Members of the CVSA - You can read more about this in our Code 'V' Spring 2015 Newsletter.  We will keep you updated as more information comes in about the publication.  

Nursing Grand Rounds 
May 2015 - 
Froedtert & Medical College
of Wisconsin 

Froedtert Staff Attend Nursing Grand Rounds Featuring 'The Vicious Cycle - Cyclical Vomiting Syndrome"

More than 50 Froedtert Staff attended last month's nursing grand rounds on May 14th and 21st.  The purpose of Nursing Grand Rounds is to develop and support the clinical knowledge and skill of all nursing staff in order to promote professional advancement, growth and advance the care of patients.  

Thank you to Denise Bellcock, RN from the GI Clinic and Melanie Krueger, RN from Educational Services along with Dr. Venkatesan, Associate Professor and CVS expert at the Medical College of Wisconsin for leading these presentations!  

You may read the full article in our next issue of our 
Code 'V' Newsletter coming out at the end of August.  
Our 'Run for the Bucket'
5K Run/Walk Annual Fundraiser 
in Wisconsin was a Success!  


Thank you to everyone who joined us for our 9th annual 5K Run/Walk on May 30th in Waukesha, Wisconsin!
We all lucked out with the weather, as it rained prior to the event and just after the race ended.  

Registered/Attendance for the Event - 248 
CVS Children & Adults - 26 

The CVSA raised over $24,000.00!

Race Winners:
1st Place - Adam Bruss - Elapsed Time:  18:35
2nd Place - Anson Badger - Elapsed Time:  20:35
3rd Place - Samantha Foster - Elapsed Time:  21:45

***********************************************

Tom and myself (Shelley) Kupetis, publish this
e-Newsletter 'Highlights' every month.  Our family and friends along with Julia's Dad, Ed Benway, and his family and friends, were able to raise a total of $7,295.00 for this event!  This fundraiser meant a great deal to us so that we may honor our daughter, Julia Benway, age 14.  We are grateful to everyone who contributed on behalf of Julia, and are so blessed to have wonderful people in our lives who wanted to help raise awareness and $ for the CVSA! 

A shout out to all of our sponsors!  A special thank you to Froedtert and Medical College of Wisconsin, Lapham-Hickey Steel, The Community Foundation serving Southwest Colorado, Three Lollies and Silver Circle Sports Events for being a part of this annual fundraiser.  


Thank you to Debbie Conklyn, and Ron & Ruth Novak for all of  your hard work, time and effort that went into making this such a successful and well-attended event!  The CVSA is lucky to have such dedicated Board Members and a Program Director who can take on this annual Run/Walk! 

Father/Son Hike planned on the Colorado Trail to raise awareness and $5,000.00 for CVS Research! 

June 10, 2015 - 30 Day Journey
   

Hunter Stafford, age 19, and his Dad, Ed Stafford, are going to hike the entire Colorado Trail this summer to raise $ for the CVSA!  Hunter's CVS started at the age of 6 months, lasted until he was 12 years old and miraculously stopped occurring in the 7th grade.  His episodes lasted for 1 week and occurred every 6 weeks of his life.  During this time he endured severe migraine headaches and vomiting to the point of needing IV fluids every episode.  Hunter thought his episodes were gone forever until just recently when CVS struck again.  

The hike will begin at Chatfield Reservoir in Denver, and will end in the town of Durango.  This trail stretches 486 miles. 

To Date:  $640.00 has been raised!  If you would like to help Hunter achieve his goal between now and July 10th, you may do so by visiting Hunter's Fundraising Page at:  

http://fundly.com/we-re-tired-of-puking 

Hunter has also set up an Instagram account to promote this cause as well:  @hikenotpuke.  

We wish you the best of luck on this Hike! 
Golf for Awareness Event to be held in Tampa Bay, Florida - 
October 10, 2015

 

After taking a year off to start my Freshman year of college, we are back at it!  Join us for the 2nd CVSA charity golf tournament on Saturday, October 10, 2015.  The scramble shotgun will begin at 9:00am.  Bring friends and family!  

 

If you are feeling extra generous, please consider supporting through a tee or title sponsorship, or a prize donation!  Be on the lookout for further details and official entry forms in the next few months.  I appreciate the continued support and can't wait to see everyone in October!  

 

 Danielle Campbell 
 


 

CVSA Support Group Calls