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Highlights eNewsletter - March 2016
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Welcome to the March Issue of Highlights!
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Spring is almost here!
We have so much to share with our membership, and are busy preparing for our 2nd Annual CVS International Awareness Day on March 5th, our 10th Annual 'Run for the Bucket' 5K Event on June 4th, and our 12th International Adult and Family Conference scheduled for the last weekend in June. The conference will once again be hosted in Milwaukee, Wisconsin. We hope you can attend our upcoming events, and look forward to seeing all of you. Please read below for exciting medical news and a new research study that is being conducted at this time.
* March 5th - CVS International Awareness Day is coming up this Saturday. We need your support to help us raise awareness!
Thank you for being a part of the Cyclic Vomiting Syndrome Association. We are grateful to have such wonderful members support our organization.
Happy Easter to the CVSA Community!
Highlights eNewsletter created by: Tom and Shelley Kupetis
CVSA - HOPE STARTS HERE!
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CVSA Welcomes
New Board Member -
Kristin Koch
Greetings to all CVSA Members! My name is Kristin Koch. My family has been involved in this wonderful association since my diagnosis of CVS in 1996. Some of you may already know my story. I was five years old when my episodes started, my diagnosis came soon after thanks to my parents and grandparents persistence and research. In the fall of 2003, my parents and I coordinated the first Connecticut Walk to "Stop the Cycle" of Cyclic Vomiting Syndrome. We repeated our fundraiser in 2004, 2005, 2006, 2007, 2008, 2009, 2010, 2011 and 2012. My family and I have attended several CVSA Conferences during which we had the opportunity to meet many of you. This year I became the newest member of the Board of Directors of CVSA, and I look forward to getting to know all of you in the future.
Thank you Kristin for sharing your story. Welcome to the CVSA Board of Directors!
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CVS International Awareness
Day T-Shirts
Fundraiser
Thank you for supporting our CVS International Awareness Day T-Shirt Campaign!
T-Shirts Sold: 108
Funds Raised: $1180.00
Please wear your shirts on Saturday, March 5th -
CVS International Awareness Day, and spread the word
about CVS! Show your support by wearing your shirts and posting pictures on Facebook.
United in the Global Fight Against CVS!
Thank you to Debbie Conklyn for running this campaign!
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Shout Out - Peoria Christian School!
Peoria, Illinois
Thank you to Susie Algas Johnson for reaching out to the Peoria Christian School and asking for their financial support! Susie has been very active in raising awareness in her community this past year since our Run for the Bucket 5K Event last summer. Her daughter, Alexis, is a CVS Sufferer. We appreciate all that you do for the CVSA!
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Shout Out - The
Deaver Family!
Jennifer Deaver passed away from complications of CVS in 2009. She was only 29 years old. Friends and family continue to donate to the CVSA each year in memory of Jennifer. From all of us here at the CVSA, we thank you for your continued support!
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CVSA Press Release Promoting
CVS International Awareness Day -
Press Release Date: February 23, 2016
Help Support Us and Spread the Word!
CVSA associations in Australia, Denmark, Germany, Ireland, Italy, Japan, the Netherlands, Spain, the United Kingdom, and the USA/Canada, along with many of our other 27 contact countries, are joining together to create a cohesive global movement around CVS issues. By working together, we can inform people worldwide that this is a common syndrome, and ensure that doctors consider it in their diagnosis. By sharing information and resources we can reach both sufferers and those who still may be undiagnosed.
Please share this information with friends and family! Share on your personal Facebook page and CVS Support Group Facebook pages to spread the word about CVS around the world. Together we can make a difference in the lives of all of those who suffer from CVS.
United in the Global Fight Against CVS!
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'Cocktails for A Cause' - Fundraiser
Hosted By:
Tara Destribats & Tracey Destribats
West Trenton, New Jersey
Friday, March 4, 2016
Please join us for cocktails and light appetizers to help raise global awareness about Cyclic Vomiting Syndrome!
A portion of the proceeds from the event will support the CVSA . Anthony and Tara Destribats are board members of the CVSA. Tara is hosting this event with her sister-in-law Tracey. Cyclic Vomiting Syndrome is an unexplained, under-diagnosed, complex disorder that affects all age groups. The Cyclic Vomiting Syndrome Association helps create awareness about the illness, and helps support CVS sufferers and their families.
Dress Code - No Denim
WHEN
Friday, March 4, 2016 from 6:00 PM to 8:00 PM (EST)
WHERE
Trenton Country Club - 201 Sullivan Way West Trenton, NJ 08628
We hope to see you Friday Night!
Thank you Tara and Tracey - We wish you the best of luck!
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Medical News!
CVSA Adult Guidelines Committee Update
CVSA President & Research Liaison - Kathleen Adams
Clinical practice guidelines on diagnosis and management of
cyclic vomiting syndrome in adults.
Update on Committee Progress - March 2016
Member selection for this important committee took place in the summer of 2015. The 12 selected members from a variety of specialties have been working together since then on a number of conference calls and one in-person meeting. The task has been mapped out carefully with guidance from experts in the methodology of developing this standard of care.
A well known medical research librarian from Stanford University, Christopher Stave, has recently joined the team to develop our literature search component. The committee members are working individually, in small groups and the full group to sort through and refine questions about the diagnosis and treatment of CVS in adults. This will lead to the development of the narrative for the final document to be published in a reputable peer review medical journal. The resulting document will be distributed and circulated globally for use among clinicians who are treating adults with CVS - often without the benefit of consultation and collaboration for successful treatment.
In addition to guidance, this work is also intended to identify knowledge gaps in CVS, which should provide an impetus for future research and federal funding.
This is a substantial undertaking dictated by the global need. CVSA is proud to be the logistical and financial sponsor for this landmark accomplishment!
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Medical News / Research Study
Study Conducted By: Kathy Hibbert, Ph.D.
March 2016
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: [email protected]
. 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.
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CVSA 10th Annual
'Run for the Bucket' 5K Event
Saturday, June 4, 2016
Waukesha, Wisconsin
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!
Special pricing is available for teams of 10 or more individuals. 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
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CVSA 12th International Adult & Family Conference
June 24-26, 2016 - Milwaukee, Wisconsin
Register Today!
Location: Sheraton Brookfield - Milwaukee, Wisconsin
Hotel Rooms: CVSA Block priced at $95.00 per night
Members:
$175.00 Individual / $250.00 Couple / $275.00 Family
Non-Members:
$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
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Top 10 List!
Reasons Why You Should Attend the CVSA Conference
#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!
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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 - Program Director
CVSA Office: 414-342-7880
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Visit our Facebook Page and Like Us Today!
Facebook -
Cyclic Vomiting Syndrome Association
Likes to Date: #8,585
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Code 'V' Newsletter - Mailed out to Members
Next Issue - April/May 2016
(3) Publications per Year
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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
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CYCLIC VOMITING SYNDROME ASSOCIATION
HOPE STARTS HERE!
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STAY CONNECTED WITH CVSA ON SOCIAL MEDIA:
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