Michelle Sawicki

Thanks Emily! It is greatly appreciated. Michelle

Hi guys, I just received the bill to keep the forum up for another year. It is $108. In past years we've been blessed to have members sponsor the forum. Anyone want to sponsor it this year? If so, let me know by PM'ing me or emailing me through the forum or sending an email to staff@dinet.org. THANKS! Michelle

Hi Jeff, I second Nina and Katherine's thoughts here. I've checked out other forums that do have split categories and everyone still posts in one main category. Feel free to use the poll feature regarding factors preluding the onset of dysautonomia. Take care, Michelle

I've had Bell's Palsy previously as well. Michelle

The authors on our website hold the copyright to their stories, so please be sure to ask them for permission before you use their stories. Michelle

You can put in brochure requests on our website at http://www.dinet.org/brochures.htm Michelle

Thanks for sharing that idea, Jill. It's a good one. Michelle

Thanks Melissa, I should add that Valerie Fenston, our own angel straight from heaven, is mailing out the brochures. She's the greatest! Michelle

Great to hear your feeling a bit better, Melissa. Keep healing! Michelle

Thanks, I'm going to PM you on this. Michelle

There is some information on pacemakers/NCS on our NCS page: http://www.dinet.org/NCS/ncs.htm Michelle

Hi Melissa! Please take it easy and take care of yourself. You know my advice when anything unusual happens is "get to the doctor." There are always walk-in clinics and such until you get established with a permanent physician. I hope you are feeling better soon! Michelle

Lisa, I really want to maintain the quality of the brochure, and therefore would prefer to have it professionally printed. I'm hoping we can get enough donations to make that feasible. Gena, Please do get in touch with me regarding printing. It would be wonderful to have the brochures printed at cost or at a reduced cost. Michelle

We've had several requests from members wanting brochures. We printed the first batch of brochures to target physicians. I am working to make the brochures available to members as well. To make brochures available to members we will need two things that I can think of off the top of my head: 1. Funds to print them. If anyone would like to put funds toward this project you can do so by writing it on your check. If paying by credit card, debit card or online check, there is a place on the site (Network for Good) where you can specify how you'd like your funds used. You can donate funds for this project by using the Network-For-Good donate button, available on our How You Can Help page. To give you an idea of needed funds, it cost us about $700. to print and mail 500 brochures. Also, if anyone out there has access to wholesale printing and can help with our printing costs in that manner, we would greatly appreciate it. You can also help by sending a book or more of stamps to us at: DINET PO Box 55 Brooklyn, MI 49230 2. We will need a dedicated volunteer to mail the second batch of brochures to members. If any of you would like to take on this project, please let me know. DINET will, of course, pay for postage. Thanks, Michelle Sawicki

And thanks for the complimets on the brochures, Nina. Michelle

Thanks Ernie! I am tempted to take you up on it, but I am hoping to get one person to handle the whole project. That would be easiest from our end. Michelle

Hi Patti, I am working to make the brochures available to members as well. We printed the first batch to target physicians. To make brochures available to members we will need two things that I can think of off the top of my head: 1. Funds to print them. If anyone would like to put funds toward this project you can do so by writing it on your check. If paying by credit card, debit card or online check, there is a place on the site (Network for Good) where you can specify how you'd like your funds used. You can donate funds for this project by using the Network-For-Good donate button, available on our How You Can Help page. To give you an idea of needed funds, it cost us about $700. to print and mail 500 brochures. Also, if anyone out there has access to wholesale printing and can help with our printing costs in that manner, we would greatly appreciate it. You can also help by sending a book or more of stamps to us at: DINET PO Box 55 Brooklyn, MI 49230 2. We will need a dedicated volunteer to mail the second batch of brochures to members. If any of you would like to take on this project, please let me know. DINET will, of course, pay for postage. Thanks, Michelle Sawicki

You're more than welcome, Nina! I should really be thanking you! Michelle

The brochure will just be mailed. It will not have anyone's name on it or say anything about someone requesting it be sent. The model on the cover is Lori Valenti. Her story is on our site, and she has her own web site at www.lorivalenti.net I have a lot of teenage boys running through my house, and it was amazing how interested they all got in POTS after seeing Lori on the cover of the brochure. Michelle

Thanks Emily. So many people helped along the way...Dr. Stewart provided his expertise, Lori provided her picture, my friend Jes scanned the picture in (one of these days I will get a scanner...). I am happy with the way it all turned out and I hope the brochures will help spread the word about dysautonomia. Michelle

Read it at: http://www.dinet.org/Summer2005/summer05news1.htm If you have filled out the join form on our web site you should have received an email notification regarding this newsletter. If you have filled out the join form and did not recieve a notification email, please check to be sure it is not being filtered as spam or junk mail. Also, if you have changed your email address but have not notified us, we have no way of sending you notifications. Changing your email address on the forum does not automatically change your email address on DINET's main member list. Likewise, joining the forum does not automatically add you to the DINET member list. Best wishes to all, Michelle Sawicki

We've tested the page and everything is working fine, so feel free to fill out the form and have brochures sent to the doctors of your choice. Michelle

We just put it up and are still testing the form, so we haven't "officially" announced it yet. If you can, please wait until tomorrow to fill out the form so we can make sure everything is working correctly. And yes, we could definitely use donations to keep this campaign going. We printed 500 brochures and they cost over $500. We will be spending another $200. to mail them, possibly more depending on how many overseas requests we get. So that is $700. we have invested to mail 500 brochures. Donations are needed and appreciated and can always be made on our How You Can Help page. Thanks! Michelle

I can tell you that studies show most patients improve with proper treatment. I feel a million times better on a beta blocker, but -as your experience shows- we are all different and will respond differently to medication. I couldn't imagine living without my beta blocker. I do take licorice root -an alternative therapy- but, as pointed out earlier, we all respond differently to treatments. Michelle

Hey Nina, Check out the "causes" page under Ehlers-Danlos syndrome: http://www.dinet.org/what_causes_pots.htm Down at the bottom in the references section you will find references to articles that have been published on the EDS/OI connection. And Jan, yes I was diagnosed with EDS classical type (EDS 1) by a geneticist based on my stretchy skin, scars and hypermobility. Michelle