Highlights eNewsletter - April 2016
Welcome to the April Issue of Highlights!
Spring has arrived! We hope you all had a lovely Easter Sunday.
Thank you to all of you who supported us on March 5th to raise awareness around the world! Please look for stories and pictures that were sent into us for CVS International Awareness Day in the next issue of our Code 'V' Membership Newsletter. A shout out to all of those who used Social Media to share your personal stories, pictures and posters, to spread the word about CVS.
We continue to prepare for our 10th Annual 'Run for the Bucket' 5K Event on June 4th, and our 12th International Adult and Family Conference coming up 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 this summer.
Thank you for being a part of the Cyclic Vomiting Syndrome Association!
Highlights eNewsletter created by: Tom and Shelley Kupetis
CVSA - HOPE STARTS HERE!
* PLEASE NOTE OUR NEW ADDRESS *
P.O. Box 270341
Milwaukee, WI 53227
'Cocktails for A Cause' Fundraiser was a Success!
Tara Destribats & Tracey Destribats
West Trenton, New Jersey
Friday, March 4, 2016
Anthony and Tara Destribats are board members of the CVSA. Together, with the help of Anthony's sister, Tracey, they were able to raise $4,500.00!
The evening featured cocktails, appetizers, and a silent auction to help raise global awareness about Cyclic Vomiting Syndrome to support CVS International Awareness Day.
80 friends, family members and local CVSA parents of kids who suffer from CVS showed up to support this cause, and raised awareness throughout their community.
Thank you for hosting such a wonderful event Destribats Family!
* MEMBERS - Look to read more about this event in our Spring issue of Code 'V'. *
Shout Out - Kyla Hines
Donations to the CVSA: $225.00
Thank you to Kyla for raising CVS awareness in your community of Charlotte, North Carolina! We are so happy you were able to host this 'Coins for Hope' Fundraiser, and commend you on raising a total of $225.00 to contribute to the CVSA. We hope you enjoyed doing this community service project through your Middle School and thank everyone who donated in honor of you. Please know you are an inspiration to the 8th graders at your school and to everyone who battles CVS on a daily basis. Thank you for making a difference!
Shout Out - Dominic Gallardi
CVSA Selected for a Grant: $2,500.00
Thank you to one of our Members, Dominic Gallardi, for recommending the CVSA to your company to be considered for a Grant. We are so honored to learn we were accepted on March 5th - CVS International Awareness Day! Our organization received a $2500.00 check for this Grant, and we are truly grateful. Dominic works for Vertical Bridge REIT, LLC in Boca Raton, Florida. Thank you Dominic!
Painting with a Twist Fundraiser
Hosted By: Tiffany Sharpe
Date: Saturday, April 16, 2016
Location: Lakeland, Florida
Mother's Day Fundraiser
CVS Speaks/Colleen Rice
Mother's Day T-Shirt Fundraiser going on now until April 7th on Booster.com.
A portion raised will benefit the CVSA, and will be used to help fund the Adult Guidelines Project for diagnosing and treating CVS!
Medical News / Research Study
Study Conducted By: Kathy Hibbert, Ph.D.
Please participate in CVSA's newest Research Study!
With proliferating patient communication forums, rich experiential information is shared, but most often not accessed by health professionals. While participants in the forums can be considered experts in terms of what it is like to live with this chronic illness, there is a missed opportunity to incorporate them within the knowledge and experiences of health care providers. Part of the problem lies in a lagging communication between the specialists who know and understand the illness, and the front line health care team who are responsible for diagnosing and treating CVS in the emergency room or the primary care physician's office. This study seeks to bridge the gap between CVS patients, CVS experts, and the general medical community (ER's, primary care physicians, etc.).
Participating in this study is simple. All that is required is for you to contact Kathy to sign a consent form at: firstname.lastname@example.org
. Kathy's team will be reviewing the message board and CVSA Facebook page posts of all who consent to participate. If you consent to this phase of the study, they will collect posts that you have made and use them to generate a better understanding of what it is like to live with this illness. They may use direct quotations from your posts, but no identifying information will be included. You may choose to withdraw your consent to participate in the study at any time, or refrain from including certain posts or comments you have made. If you decide to withdraw from the study, you have the right to request withdrawal of information collected about you.
Kathryn Hibbert, Ph.D. (the Principal Investigator of this study) is a medical education researcher and mother of CVS "Warrior" Allison. She believes that by bringing the voices of those affected together with the experts in the field will not only serve the patients, but will help to educate other providers who have not yet encountered and/or recognized a patient with CVS. She plans for this study to result in a book whose working title is: Learning about Cyclic Vomiting Syndrome: A rare illness viewed through the various perspectives of patients and their health care providers.
CVSA 10th Annual
'Run for the Bucket' 5K Event
Saturday, June 4, 2016
Registration is Open!
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! Discounted rates are available through the end of April.
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.
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: email@example.com
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
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
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....
#1 - HOPE STARTS HERE!
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!
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 #
Feel free to contact Ruth Novak - Program Director
CVSA Office: 414-342-7880
Visit our Facebook Page and Like Us Today!
Cyclic Vomiting Syndrome Association
Likes to Date: # 8,717
Amazon Smiles Program
This past quarter - $214.54 was sent to the CVSA!
* 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.
CVSA BOARD OF DIRECTORS - 2016
* 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
Next Issue - Spring 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 *
CYCLIC VOMITING SYNDROME ASSOCIATION
HOPE STARTS HERE!
CVSA | P.O. Box 270341 Milwaukee, WI 53227 | 414-342-7880 | firstname.lastname@example.org
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