Rare Disease Day!
February 29, 2012 marks the 5th International Rare Disease Day!
Check out the article below (“Rare Diseases Step Out of the Shadows and Find Support”) via the link about CVS from Plainfield Patch!
Did you know that there are only about 200,000 people estimated to have Cyclic Vomiting Syndrome (CVS)?!?
http://plainfield.patch.com/articles/rare-diseases-stepping-out-of-the-shadows-and-find-support
Save The Date-Upcoming CVSA Events
WISCONSIN
- 10th International Family & Adult Conference
June 29-July 1, 2012
@ the Sheraton Milwaukee Brookfield Hotel (Brookfield, WI)
-Join us for an informative and enjoyable weekend
March 30, 2012 (6-8pm)
@Franklin Elementary School Gym (West Allis, WI)
NEVADA
Board Break-a-thon for CVS Awareness
Saturday, March 3 (11am-1pm)
@Brandon’s ATA Black Belt Academy (Henderson, Nevada)
**For more information visit http://www.cvsaonline.org/
Get the Support you Need!
The Cyclic Vomiting Syndrome Association (CVSA) offers support groups for CVS sufferers, friends, and family members. You are not alone and there are others going through the same thing.
Currently there are 5 support groups in the following states: Arkansas, Illinois, Iowa, the New York Area, and South Carolina.
Interested in the Arkansas support group contact: Amy @amyl.ortega@sbcglobal.net
Interested in the Illinois support group contact: Hope @ Mom2threeangels76@yahoo.com
Interested in the Iowa support group contact: Christina @ christina@linuxsmith.com
Interested in the New York Area support group contact: Anne @ annegchip@aol.com or Kari @ kari92@aol.com
Interested in the South Carolina support group contact: Sarah @ kalyani@ishaya.net
REMINDER BIG NEWS !
CVSA has been invited by CureMito! to participate in the
BIG 2012 ROCK AND ROLL PASADENA ½ MARATHON
There is the potential for CVSA to benefit with substantial funds.
Thanks to Chandra Wilson of Grey’s Anatomy, her daughter, Sarina, and
Dr. Richard Boles, CVSA Primary Medical Advisor,
CVSA has the opportunity to join in this well-known “Competitor Group” charitable run – one of many.
Save The Date! Join Chandra Wilson of Grey’s Anatomy at the
Inaugural Pasadena Rock ‘n’ Roll Half Marathon on
Sunday, February 19, 2012.
CVSA has put together a team for the run – walkers, runners, sponsors, donors
JOIN “CVSA Team – Hope Starts Here”
CureMitro!, a non-profit charity, benefits patients with mitochondrial functional disorders, including Cyclic Vomiting Syndrome. Dr. Richard Boles directs the CCS Center for Metabolic & Mitochondrial Disorders at Children’s Hospital in LA. The Center integrates diagnosis, treatment and research. Dr. Boles has been a Primary CVSA Medical Advisor since 1999 and continues to do extensive research on Cyclic Vomiting Syndrome.
Make a donation
Come to the race and help Cheer on Team CVSA !
PLEASE CONSIDER A DONATION TO TEAM CVSA IN THE RUN.
Just follow the link below to make a donation – large or small !!!
Ready for Walkers’ & Runners’ Registration AND Donors
Cyclic Vomiting Syndrome Association ANNOUNCES FUND RAISER
“Where Pop & Classical Collide”
To Benefit the Cyclic Vomiting Syndrome Association
The Cultural Center of Cape Cod
307 Old Main Street
South Yarmouth, MA
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Saturday, January 21, 2012 (7-10pm)
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For tickets call #508-394-7100
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BYO Refreshments!
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$18 pp. Featuring music by Joan Kirchner & Brian Billiter with Chros Morris on Piano & Special musician friends, raffles, snacks & beverages
Beat Holiday Stress With These Helpful Tips!
- Get proper sleep. Make sure to make an effort to get to bed at a decent hour during the holidays can combat stress.
- Exercise. It can help boost your mood.
- Control your eating. Watch the foods you eat, especially the desserts. But don’t stress out about what you are eating.
- Plan ahead. When it comes to packing or shopping take your time and make sure you have plenty of time to complete your tasks.
- Learn from the past. Avoid previous year triggers.
- Make time for real fun. Make sure to participate in not only family outings, but things that YOU like to do as well. Go to a movie, take a nap, go ice skating, or go to the gym.
Top Ranked Hospitals for Gastroenterology
Many CVS suffers are patients at the gastroenterology department at their local hospital. Below is a listing of U.S. News top 20 hopsitals for gastroenterology:
1. Mayo Clinic
Rochester, MN
-Reputation with specialists: very strong -Nurse staffing: highest
- Cleveland Clinic
Cleveland, OH
-Reputation with specialists: strong -Nurse staffing: highest
- Johns Hopkins Hospital
Baltimore, MD
-Reputation with specialists: strong -Nurse staffing: highest
- Massachusetts General Hospital
Boston, MA
-Reputation with specialists: strong -Nurse staffing: highest
- Mount Sinai Medical Center
New York, NY
-Reputation with specialists: significant -Nurse staffing: highest
- Ronald Reagan UCLA Medical Center
Los Angeles, CA
-Reputation with specialists: significant -Nurse staffing: highest
- Hospital of the University of Pennsylvania
Philadelphia, PA
-Reputation with specialists: significant -Nurse staffing: high
- New York-Presbyterian University Hospital of Columbia & Cornell
New York, NY
-Reputation with specialists: significant -Nurse staffing: highest
- University of Chicago Medical Center
Chicago, IL
-Reputation with specialists: significant -Nurse staffing: highest
- UPMC-University of Pittsburgh Medical Center
Pittsburgh, PA
-Reputation with specialists: significant -Nurse staffing: average
- Cedars-Sinai Medical Center
Los Angeles, CA
-Reputation with specialists: significant -Nurse staffing: highest
- Barnes-Jewish Hospital/Washington University
Saint Louis, MO
-Reputation with specialists: significant -Nurse staffing: highest
- Duke University Medical Center
Durham, NC
-Reputation with specialists: significant -Nurse staffing: highest
- UCSF Medical Center
San Francisco, CA
-Reputation with specialists: significant -Nurse staffing: highest
- Brigham and Women’s Hospital
Boston, MA
-Reputation with specialists: significant -Nurse staffing: highest
- Indiana University Health
Indianapolis, IN
-Reputation with specialists: significant -Nurse staffing: highest
- Vanderbilt University Medical Center
Nashville, TN
-Reputation with specialists: significant -Nurse staffing: highest
- Northwestern Memorial Hospital
Chicago, IL
-Reputation with specialists: significant -Nurse staffing: average
- Cleveland Clinic Florida
Weston, FL
-Reputation with specialists: significant -Nurse staffing: average
- University of Michigan Hospitals & Health Centers
Ann Arbor, MI
-Reputation with specialists: significant -Nurse staffing: highest
Works Cited
U.S. News. (2011). U.S. News Best Hospitals: Gastroenterology. Retrieved November 28, 2011,
from: http://health.usnews.com/best-hospitals/rankings/digestive-disorders
CVSA Needs Your Help!
Requesting VIDEO CLIPS about Individual Experience with CVS.
CVSA Member Linda Fox and son Bryan to make a film about CVS
In an effort to “get the word out” about the debilitating conditions of cyclic vomiting syndrome (also known as CVS) and abdominal migraine, CVSA member, Linda Fox and her son Bryan are making a short (2-3 minute) film to inform the public about these conditions. Linda is working in collaboration with CVSA. The film will be created by putting together video clips of CVS and abdominal migraine sufferers of all ages, as well as parents, spouses, and CVS medical advisors, talking about their experiences. The goal is to create a film collage that is both gripping and informative. The film will ultimately be posted on CVSA’s web site, Facebook page. and on YouTube.We do NOT want any clips of adults or children during episodes.
We would like the film to be completed as soon as possible. Once we receive the video clips, we can begin the project of making the film.
The deadline for submission of video clips is May 1, 2012.
More Information and release form go to the below link:
http://library.constantcontact.com/download/get/file/1102007024031-131/VideoClipsAndRelease10-11.pdf
CVSA Big News!
CVSA has been invited by CureMito! to participate in the Big 2012 Rock and Roll Pasadena 1/2 Marathon.
Don’t miss this opportunity to Join Chandra Wilson of Grey’s Anatomy at the Inaugural Pasadena Rock’n'Roll Half Marathon on Sunday, February 19, 2012.
CVSA has put together a team for the run/walkers, runners, sponsors, donors
Join “CVSA Team-Hope Starts Here”
Go to: http://www.active.com/donate/curemito/cvsa
*CureMitro!, a non-profit charity, benefits patients with mitochondrial functional disorders, including Cyclic Vomiting Syndrome. This “sister” charity to CVSA is also advised by Dr. Richard Boles who directs the CCS Center for Metabolic & Mitochondrial Disorders at Children’s Hospital in LA. The Center integrates diagnosis, treatment and research. Dr. Boles has been a Principle CVSA Medical Advisor since 1999 and continues to do extensive research on Cyclic Vomiting Syndrome.
A CVS Sufferer’s Experience at CHW
My name is Kristyn Rein and I am 22 years old and a recent graduate from Valparaiso University in Indiana. I have been suffering from cyclic vomiting syndrome (CVS) for about 16 years now. Throughout this time there is one particular episode that I will never forget.
During my freshman year of high school a terrible episode began, and it occurred at a horrible time, first semester finals week. On a cold Saturday morning, my aborting medicine was not working. My mom took me to the ED at Children’s Hospital (WI). Finally, after waiting what seemed like hours I was seen by an ED doctor who requested that I get a spinal tap and then I was to be admitted to the hospital for further observation.
Throughout my stay it seemed like they performed hundreds of tests. Some of these included: MRI’s, Cat scans, EEG’s, x-rays, ultrasounds, and blood tests.
The support of family and friends was really important to me. My mother stayed with me in my room for the duration of my stay. Also, my father, brother, and sister were frequent visitors. Some school friends also made the trip to the hospital to visit me and show their support.
Finally after what felt like ages to me, I did get better and was discharged (which was almost 4 weeks). This whole experience has taught me many valuable lessons. One of which includes the importance of family and friends, especially during difficult times. To this day I still suffer from CVS, but I do not let it control my life and I’m a normal young adult involved in many different activities, athletic and scholastic.
*For more information about CVS visit: cvsaonline.org
