What does CVSA do for YOU?.

Adult CVS Mailing - December 1998

To:	Adults with CVS
From:	Julie Kennedy
	Adult Coordinator CVSA

Hello to everyone!

Enclosed you will find a personal letter of introduction from me, along with a CVSA Brochure and Membership Form and a post card which is stamped and self-addressed to me.

The membership form is for those people who are not yet members, or need to renew memberships soon. For those of you who do not need to do renewals yet, you may hold on to the form for future use. As Michelle Carlborg stated in her last mailing, we have 119 listings for adults with CVS and only 72 are CVSA members. The $30.00 membership fee helps to cover two formal newsletters that we publish and mail each year, voting rights, and updated information on new research, treatments, medications, and testing. Membership fees can be waived for a variety of reasons. The CVSA has a specific fund set up for this. When requesting a scholarship while applying for a membership please note this directly in the application.

I would like to have people return the post card to me with any changes of name, address, telephone number, or e-mail address. You may also use it for personal updates you would like to share with us. I am specifically looking for input and suggestions on what, as adults with CVS, you feel your needs are and how I could help facilitate meeting those needs through the CVSA. I am open to listening to whatever you may feel is important.

In just a few short weeks we will be making an addition or two for helping to support adults with CVS. I will be working on a layer page for the "Official Cyclic Vomiting Syndrome Home Page" that will pertain to adults. This should be a very valuable addition. From this page we are hoping to add a link to a web site that we are currently working on which will share CVS information that is important specifically to the adult community of CVS. Since this will be a support system for the adults of CVS we will be asking for contributions from our adult membership to add to this site. In January we will begin creating an Adult CVS Web Ring to add to our Children's CVS Web Ring. A web ring is simply a way of connecting a group of web sites dealing with a similar topic so that people can navigate their way easily from one site to the next. In this case, each site would tell the story of one individual or family who has been affected by CVS. This is one way of encouraging support to others with CVS of all ages. All we ask is that you tell your story in your own words and let us tell the world for you. You can give as much or as little information as you like. If you don't feel comfortable with giving out too much information on the Internet you can leave off your last name, location, whatever you like. You can also include whatever you like; your personal story, symptoms, problems you've run into, medications you've tried, even (with permission) names, email addresses, etc. of the physicians in your areaa who are determined to help us battle this syndrome.

Each web site will contain the CVS Web Ring, a guest book that visitors to your site can sign, your email address if you choose, your story, a visitor counter, and even a photo if you desire. Single page or multi-page sites can be tailored to individual tastes in background, text, color, font style, even music. We'll assist you in obtaining a free web site of your own, or if you'd only like a single page we can include it on one of our sites. Once your site or page is designed, we'll send you the URL (location) of the page so that you can view it prior to posting it on the Internet. This will allow you to let us know if there are any changes that need to be made. We'll do anything we can to get this information out there for you, and we'll work with you hand in hand all the way. Please help us, and in so doing, help yourselves and those with CVS. Please let me know if you are interested.

HOW TO CONTACT THE CYCLIC VOMITING SYNDROME ASSOCIATION

Debra Waites CVSA Administrator
3707 Cedar Hill Rd NW
Canal Winchester, Ohio 43110
614-837-2586
drwaites@infinet.com
http://www.beaker.iupui.edu/cvsa

Julie Kennedy, Adult Coordinator CVSA
1533 McAfee Street
St. Paul, Minnesota 55106
651-771-4436
jul1533@aol.com

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