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brosmom

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Happy New Year.  On behalf of the Board of Directors, I hope everyone had a healthy holiday season.  There is much excitement in the air for CVSA.  We have a couple of new fundraisers coming up as well as a few new support group meetings.  Check the CVSA website for more information.  In January we welcomed a new member to the Board of Directors, Jennifer Dhuse.  Jennifer is from Illinois and her family was involved with the WI walk last year.   You may have caught the article in the most recent newsletter about her and her family’s involvement with CVSA.  Welcome Jennifer.  There is lots of anticipation for the Family Conference for 2012.  Some highlights include date with the doctors, a CVS fair, and Chandra Wilson from Grey’s Anatomy will be the keynote speaker at the conference.  The Conference will be held in Milwaukee Wisconsin on June 29th-July 1st, 2012.  Book your room and register now to get early bird registration.     


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brosmom

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From the Desk of Ron Novak

There has been lots of fundraising activity in the past few months: The Cure Mito run, a Board breakathon, CVSA awareness party, and a Zumbathon all to benefit CVSA.  Thank you for all who helped organize these events as well as the attendees and supporters. 

Our membership is at a record high of just over 700 members; thanks to everyone who is a member. 

The office has been busy with the fundraisers, the upcoming newsletter, the Family Conference, and the WI walk.  There is more information about the Conference and the walk on our website.    

Welcome to our new board member Robin Raskin.


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brosmom

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FROM THE DESKTOP OF CAROL WARNER

The CVSA BOD director’s recently held their monthly teleconference call.  CVSA will have a booth at the Digestive Diseases WeeK, to be held in San Diego, in May.   One of CVSA’s Primary Medical Advisors, Dr. Thangam Venkatesean will be giving a presentation on CVS during the conference. This will give CVS great exposure, as it is expected that 10,000-12,000 Gastroenterologists will attend the week. Planning for the 10th CVSA Family Conference to be held in Milwaukee, Wisconsin, June29th – July 1st, is into its final stages.  The BOD is very excited about the new additions to the conference and encourage everyone to try and take advantage of the Early Bird registration discount which is available until May 15th.  Check out the CVSA website for more information about the conference.  We look forward to seeing many of you there.




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brosmom

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FROM THE DESK OF CONNIE HILL

The CVSA BOD held their monthly conference call last night. This is a very busy time for us, there seems to be a lot of interest in fundraising going on, which is very exciting for us.  Don't forget to mark your calendars for the June 2nd Wisconsin Walk, this will be the 6th year for this event. What a great way to raise money and have fun at the same time. The planning is almost done for our 10th CVSA Family conference in Milwaukee, Wisconsin. Mark the dates 6-29-12 through 7-1-12 you won't want to miss this, we are excited about the new additions we have added to the conference. If you haven't registered yet please go to our web-site and get registered. Looking forward to seeing everyone there.

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pdhuse

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FROM THE DESK OF JENNIFER DHUSE

The CVSA Board held the in person board meeting on Friday June 29 in Milwaukee Wisconsin. We were excited to learn that the Wisconsin Walk rose just over $21,000 this year. There are several fundraisers in the planning phase; some of them are the Connecticut Walk, as well as a Little Black Dress Event in New York.  Amy Preston has stepped down as the CVSA Vice President; Kathleen Adams appointed Carol Warner as the interim replacement. With Carol’s new role as VP Kathleen had to also assign an interim replacement for Secretary which was assigned to Jennifer Dhuse. Official elections will take place in January for the permanent replacements. The conference in Milwaukee was a wonderful opportunity to meet so many other people that also suffer from Cyclic Vomiting Syndrome and their families. As well as the Primary Medical Advisors who made themselves available for dates with the doctor as well as casual conversations during breaks, lunch and dinner. Of course we can’t forget our Keynote Speaker Chandra Wilson, though she is famous, she is a Mom like many of us trying to find answers for her daughter. Please check out the next newsletter which is scheduled to be mailed in August for a recap of the conference.


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robinr

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News from the Board of Directors - Aug 22
The Board of Directors meeting was held this past Tues. The commitment to the continuation of the annual conference was unanimous and we discussed both the successes and room for improvement for the next conference. Many thanks to all who attended and to all who made it a success. Videos of the sessions are now available online.

Linda Fox, a CVS caregiver, diligently watched hours of video footage that Seth Dearborn (Kari Christian, a sufferer's boyfriend) compiled at the conference. She created two YouTube films -- one that features the CVS Advisory Board's outstanding doctors sharing their insights, and a second where sufferers and caregivers got to share their personal thoughts and stories on camera. We will be sending out links to the YouTube shortly. Thanks to all who shared and worked on this. 

Kathleen Adams has embarked on an ambitious project to create an AccuConference web conferencing session. Soon we'll be able to discuss, hear experts and hold webinars without geography getting in our way. 

The Koch's are about to hold their Annual Walkathon for CVS in Connecticut. Those in the area should attend and support Laura Koch's remarkable efforts. 

Finally, while the conference is awesome and inspiring, it is far from a profit center for the CVSA. Corporate donations or other funding sources are being investigated and any thoughts from CVSA members are appreciated. 

Stay well and stay connected,
Robin Raskin, Kari Christian's mother 



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