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Joining the Worldwide Society of Wolfram Syndrome Families & Bylaws

Joining the
Worldwide Society of
Wolfram Syndrome Families

If affected by WS, individually or as a family, or if you are a MD with patients who are affected with WS, or involved in WS research you are invited to join our worldwide society.   Membership is intended to be at no cost. However, there may be expenses incurred from time to time that may be requested for reimbursement by voluntary contribution.   At present this organization totally informal and is not a registered tax deductible charitable institution.

We request that those who join our group are over 18 years old.  We consider it a parental responsibility to advise children on the nature and condition of Wolfram Syndrome.

Prior to joining please review the conditions of our bylaws.  Just for the complete understanding of everyone involved.

 

To join this small society please send an e-mail to the WSWSF webmaster.  Please include enough information about your experience with WS so that we can determine appropriately that you are not a curiosity seeker.   We will share information about our experiences with WS in return.  You are not buying your way into our restricted area, you are simply being permitted on a need to know basis.  If you are a physician or researcher please indicate where you are practicing and conducting your work.

Unfortunately, there are unscrupulous people who use the internet for their entertainment.  We hope to restrict such users from accessing our more private information.

You will receive a return e-mail with the URL address that will permit access into the other pages of this web site.  Please allow a few days for this response.  Life is busy for everyone.

Those who are directly involved with WS are encouraged to participate.,  On subsequent pages the names of those affected have been deleted or encoded in order to protect the privacy of those individuals.  Members of the society may choose to reveal their  names to others as they so desire via direct e-mail.

We do not intend to permit access to our private information pages to anyone who is not affected by or involved in WS research or clinical care. Our condition is serious enough that we do not need ridicule by the casual observer or the public in general.  If you think you may have need to the additional information on our private pages, please write us and we will consider your request on a case by case basis.

Information presently posted on the private pages include:

  • Frequently Asked Questions about Wolfram Syndrome - answered by a WS family.
  • Doctors who are presently conducting research on or actively treating Wolfram Syndrome Patients
  • Family profiles - each family is invited to post a page where in they describe their experience and how they have dealt with the disease.  This includes family pictures.
  • Bylaws of our society (also available from the public side of the web site)
  • Links to other sites (also available from the public side of the web site)
  • Helpful Hints - practical non medical suggestions that may serve useful to others affected by Wolfram Syndrome.
  • WSWSF Newsletters - collected information and news of our group members are occasionally posted.
The real value in joining the WSWSF is not in having access to the web site.  The value is found in having others who are going through or have gone through the same experiences you are having.  It can be ever so comforting to find someone who truly understands the dilemma that you face.  When you join the WSWSF your e-mail address will be shared with the other members of the society.  Should they elect to correspond with you, they will.  There is no requirement for anyone to contribute or participate if they have no desire to do so.  Those who do participate generally find the greatest benefit.  This disease is a long term gradually progressive degenerative illness lasting several decades.   There are few physicians who know the disease and precious few people who truly understand what you are going through.  This is a mutual support group.  There are no professional counselors, just understanding hearts who are going or have been through the same experience you are.  You will learn of their trials as you share yours.

 

Bylaws of the Society

As a member of the Worldwide Society of Wolfram Syndrome Families ( the “Society”) you agree:

1. That the purpose of the Society is to; a) share experience and accurate information with others who elect to participate as members; b) encourage research into the solutions and cure of all aspects of Wolfram Syndrome.
2. To contribute the benefit of your experiences,  as they may be found useful to others in the Society.
3. To respect the privacy of others in the Society by not sharing: a) your access URL with anyone who is not an approved member of the Society or; b) that you will not share information in any written or electronic form with anyone outside the Society, without the prior approval of the executive committee of the Society.
4. That information provided by you  will be shared with other members of the Society which membership may change from time to time.  You also understand and agree that the Society can not guarantee that all information will be maintained in strict confidence at all times.  The information you provide must be considered to be public information.
5. You will not submit information that is copyrighted material to be posted on the web site without an accompanied authorization from the copyright holder.   You also agree and understand that you are solely responsible and liable for the information you provide.  (if you have any question on this point, please seek competent legal advise)
6. That you waive all liability against the Society and all individual members thereof for any information that may be obtained from the Society’s web site.
7. That you are personally responsible for the care and treatment of any and all individuals under your legal charge and you understand that the Society no responsibility what so ever to aid in this care and treatment or the access to information which may assist therein.
8. That the executive committee of the society will consist of three individuals selected by an e-mail vote of the registered members of the Society.
9. That the executive committee will:  a) review and approve requests for membership; b) revoke membership & web site access if a member is found to have violated the bylaws of the Society; c) encourage participation in the Society by the e-mail distribution of newsletter to members of the Society; d) serve without pay for a term of two years and may be re-elected by the e-mail vote of the registered members of the Society.
10. That the bylaws may be changed from time to time as considered appropriate by the executive committee or by a two thirds majority of the members of the Society, provided that: a) all changes are submitted to the last known e-mail address of all registered members of the Society or posting on the Society approved web site;  b) no change to the bylaws shall be considered effective until approved by fifty one percent (51%) of the known members of the Society who respond to the proposed change within thirty days of the proposal distribution or posting.