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WV Marfan Chapter On-line Newsletter

created 12/13/98

WELCOME

THANK YOU FOR YOUR SUPPORT

We have recieved a lot of support from our members and we are very greatful,for all of you,so again THANK YOU and ENJOY!!!

POINTS OF INTEREST

We are listing several interests below if you are interested contact us.

1.MARFAN STORIES-send in your experiences with marfan to share with others.It will be listed on the online newsletter as well as in the mailer.Only initails will be used if permission or requests for other listing is given.

2.PEN PALS-Would you like a Marfan penpal to share your worries,concerns,or just make friends? Send your name, e-mail or snail-mail address to:

WV Marfan ChapterStar Rt. 3 Box 512 Mt.Nebo,WV 26679

3.Got Questions?-Send in your questions about marfan and we will do our best to get them answered for you.If you have any questions or comments you can send them to the address above or the e-mail below.

4.MEMORIALS-we would like to start making a special Memorials to all of the effected friends and family that have been lost or tragically effected by Marfans, only the information given will be used and all precautions will be taken to asure privacy and respect to the familys.So if any one is interested in adding a memorial or Special Thoughts for a loved one or friend please contact us.

PROJECTS

UPDATES-We have been doing several speaking engagements to tell those in the medical field about Marfans,and we do thank you for your support and assistance. Please let us know if you are interested in any of them.

"LEARN OUR LIFE TO SAVE OUR LIFE"-this is to promote medical staff awareness from the Doctors to the Nurses that our lives at times depend on.Does your Doctor know about Marfans? ,if not contact us with their address and we will send them the information. We are also promoting the same thing in our schools.The more awareness that is out there the safer we are.

UPCOMING EVENTS
Monthly meeting will be on the 3rd Saturday of each month at Rainelle Public Library,Please contact us for directions.The monthly meetings will always be on the 3rd Saturday of each month for your convience.

CHAPTER MEMBERSHIP

With becoming a chapter ,we have a lot of new responsibilitys and ideas.But not unlike the NMF with more responsibilitys also comes more financil needs as well. So we need to ask for a $5.00 annual membership fee,but this is what you get in return: *quarterly newsletter,both online and mailer *reasearch updates *awareness classes *peer support *monthly meetings *and full access to us at all times 24 hours a day in a multiitude of ways.

....postal mail

....e-mail

....phone

We are hear to serve you ,so for any need that you may have please let us know at:

WV Marfan ChapterStar Rt.3 Box 512Mt.Nebo,WV 26679(304)438-5518 We can also except faxes,at the same number. Please be sure to fill out our membership form on the front page .Thank You.
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Email: marfchapter@hotmail.com