How can joining the WSWSF help me?

• If you have recently been diagnosed, you have the most to benefit from participating with this group.  If you have had WS in your family for some time, you may now be prepared to share with others the wealth of your experience.
• You have likely asked questions, either mentally or verbally, that heretofore no one has any experience to answer you with.  Our participating members have access to a list of frequently asked questions and the answers to those questions as submitted by those who have WS in their family.
• Those who participate have access to the researchers and physicians to treat and study the syndrome on a personal basis.  These professionals are very kind in sharing their time and information with us.
• The WSWSF attempts to stay in contact with the known researchers of the disease.  As information from these researchers becomes available it is immediately shared with the other members of the group.
• There is strength in numbers.  The more people that we can demonstrate will be positively affected by continued research on WS, the greater the likelihood is that funding resources can be dedicated to that effort.
• The WSWSF offers the ability to speak to our governmental entities with one loud voice, as opposed to individual cries for relief.  Members in various countries are free to (and have) organized to improve governmental funding of research and treatment of WS.
• Members of the group submit their own experiences from which others may gain a wealth of understanding.
• There is a common bond, and a sense of kinship, and sincere friendship among the participants of the WSWSF.
• Membership in the WSWSF is open to all who are affected by WS.  There is no restriction of age (though parental involvement is required for those under 18), race, religion, cultural or national origin.  One of our strengths is our diversity.  Tolerance of these diversities is always appreciated.
• Organizational issues are posted for the participants to discuss, offer opinions, and deal with as appropriately as possible.
• Members submit information about their own family and the information is tracked on an ongoing basis for evaluation.
• The WSWSF uses e-mail to communicate with the other members of the group.  There is no requirement to participate on a regular basis, just an open invitation.
• Perhaps there may be nothing that you can gain from others in the group, but then perhaps you have much that you can offer to the members of the group.  The major strength of any group is found in the willingness of its members to share with one another, thus benefiting all, the giver and the receiver.
• There are no dues to pay, the whole effort is completely voluntary.
• Complaints are humbly accepted.  Suggestions are graciously welcomed. Compliments are warmly received.  If you don't like the way things are, the opportunity to make improvements will be extended to you.
• The WSWSF won't guarantee or warrant in any way that you may gain or benefit anything from participation within the group.  Life is a gamble that way.  Generally speaking, those who contribute and participate are those who gain the most, the level of participation is completely up to each individual.
• Here are a few comments from people who have joined and how they feel about the WSWSF.

Here are a few comments from some of our members

Experience will vary, but here are a few comments from those who have been sharing this journey:

"As a parent of a child with WS, the WSWSF group has given us knowledge to learn from, comfort to gain strength from, and love and friendship that crosses many miles but is never lost."
                    P.G. Nebraska, USA

"Thanks to  you  and  Internet  I  discovered  a new world of people with my same illness.   Until now I had the idea that I was alone, now I could feel belonging to a group. This makes me feel less alone and think that my illness is not so hard and this rewards  me for my pain. "
                    M.N. Rome, Italy

"For our part, the WSWSF has been the source of education and encouragement.  We have learnt from the experience of others and it has been good to know that others have at least learnt something from us."
                      P.H. Essex, UK

"Making contact with others with WS has been a source of great relief.  At last there are others who can really understand our situation... We have many new genuine friends who are like extended family members."
                    R.B. Utah, USA