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Membership
MEMBERSHIP REGISTRATION FORM
Membership in the PPA is free of charge. Registered members have access to FREE genetic testing with Dr. Frank Lehmann-Horn in Ulm, Germany. If you would like to become a member, please complete our MEMBERSHIP REGISTRATION FORM.
If you are unable to access the registration page, you can send your request by filling out our WEBSITE INQUIRY SUBMISSION FORM. If this does not work, please e-mail Linda Feld at lfeld@cfl.rr.com or you may call Linda Feld at (407) 339-9499.
Benefits of Membership:
Access to Member Services, including PPA Listserv membership, free genetic testing, and periodic updates from the PPA.
PPA Listserv:
To join, first you must become a PPA Member. Upon successful membership registration, you will be asked if you would like to joint the Listserv. If you apply, we must approve you on our backend. Once we approve you, you will receive the following welcome message upon successfully joining the Listserv:
Welcome to the Periodic Paralysis Association Listserv! Here are some rules of our listserv:
1) If you have signed up to the listserv successfully, you may post to the list using the listserv address.
2) It is PPA Listserv policy not to forward general messages, such as virus alerts, jokes or mass emailings (i.e., the kind one forwards from time to time to their entire email address list). Doing so clutters the Listserv members' email and creates unnecessary mail volume that otherwise distracts from the Listserv purpose.
3) Please limit your Listserv contributions to subject matters pertaining to Periodic Paralysis.
4) Please be mindful of the SUBJECT line by changing it where appropriate to clarify content of email threads.
5) Please keep discussion on the Listserv related to periodic paralysis. From time to time, the posts evolve to private conversations between two people not about periodic paralysis. Kindly use your judgement when the discussion might lose interest to the entire Listserv. At that point, it would be time to take that discussion "off-list".
6) Where possible, shorter messages are better received than pages of text. Less is more on the listserv.
7) Participation in the PPA Listserv is restricted to registered members of the PPA.
8) No one knows you are on the listserv unless you announce yourself by posting to the list. You will not know who is on the listserv unless someone announces himself by posting to the list.
9) Feel free to offer an introduction of yourself and, if applicable, what you hope to get from the listserv. For example, mine is:
"Hi,
My name is Jacob Levitt, MD. I have hypokalemic periodic paralysis (sodium channel mutation R672S). I was diagnosed at about age 15. I manage well on potassium chloride and Diamox. I was hoping to learn how others have done on Inspra.
-Jake (NY, hypoKPP, R672S)"
10) To unsubscribe, please click on the link at the bottom of your email.
11) To set your email to DIGEST, which allows you to receive all the day's email as a single email (rather than getting multiple emails that some complain clutter their Inbox), please request this from PPA INQUIRIES at: http://67.199.6.152/english/inquiries.asp?x=1
12) One way you can be deleted from the list is if you do not delete you subscription information at the bottom of the email before sending your email. Your subscription information will be at the bottom of a PPA email that you receive. By not deleting that information before sending, any list recipient can click on it and unsubscribe you.
13) PPA Listserv Archives are available.
14) If you have any questions, kindly post them to PPA INQUIRIES at: http://67.199.6.152/english/inquiries.asp?x=1
15) The PPA reserves the right, at our discretion and without cause, to remove members from the Listserv.
16) Regarding Survey Research: We appreciate the courtesy of your asking the PPA Listserv managers (Jacob Levitt, MD or Linda Feld) permission to do such research. We will review each request on a case-by-case basis. In general, we require:
a) purpose of the survey or research
b) IRB approved consent form
c) an explanation of what would be done with the data
d) what precautions, if any, are being taken to keep the information anonymous or private (if that were a pre-condition of the survey) or an explicit statement in a consent form that the information is not meant to be private.
17) Disclaimer: This listserv is provided for the convenient exchange of information between members of the Periodic Paralysis Association and does not necessarily represent the opinion of the PPA nor should any information be treated or considered as providing medical advice of any sort. The PPA does not verify the accuracy of any of the information posted and assumes no liability if a person elects to follow information posted on this listserv. All postings are for informational purposes only. All treatments should be reviewed with your physician. Please see our full Disclaimer at: http://www.periodicparalysis.org/english/view.asp?x=463
Sincerely yours,
Jacob Levitt, MD
President, Periodic Paralysis Association
Security and Membership Rights:
Membership is granted at the discretion of the PPA Board of Directors. There are no inherent rights implied by PPA membership. Membership is informal and non-voting. The PPA reserves the right to withdraw individual membership without cause, when, in the sole judgment of the Board of Directors, this action is deemed to be in the best interest of the Association. The PPA reserves the right, at our discretion and without cause, to remove members from the Listserv/Email List.
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