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SOME FAQs (Frequently Asked Questions) REGARDING THE WSF AND THE WSA
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My young child was just diagnosed and shown to have Williams syndrome. Which organization can help me with support groups and can send me information?Contact the WSA at TMonkaba@williams-syndrome.org. The WSA has an extensive list of WS families all over the country and can supply you with a wide variety of literature. Back to Top
How can I learn in everyday language about the deletion of the elastin gene and the FISH test ?Check out the WSF web page: www.wsf.org Back to Top
If the WSA can help me with general information, meetings, and support groups, when should I be in contact with the WSF?You should be in contact with the WSF if your child shows an interest in music, and definitely by the time she or he is in junior high school. The WSF will then keep you informed on a regular basis of its progress in establishing in various regions of the country Music Academies and other residential centers for your Williams child. Back to Top
Yes. In research, the WSF was the only WS organization to provide Dr. Colleen Morris seed money so that she could carry out her important discovery showing that the elastin gene is missing in most people with Williams syndrome. In regards to the music camp, the WSF sponsored the meeting leading to the idea of the WS Music Camp. Trustee Dr. Lenhoff found and made the initial contacts with Belvoir Terrace. The WSF has been sponsoring scholarships and subsidizing the camp since the camp first started. The WSF is currently involved in the planning and fund raising to build a series of post high school residential Music Academies and residential villages for Williams people and their families. It now appears certain that the first of these, the academic year residential Music Academy at Belvoir Terrace in Lenox, Massachusetts will open in September, 1999. The WSF is currently looking at several sites to serve Williams families in other regions of the country. Back to Top
The WSF feels that most Williams families should get involved in projects of the WSF, especially if you would like to see your Williams child get special care and services once you are no longer able to provide them in your own home. To accomplish this will take much planning and hard work by Williams families. We hope to sponsor workshops in various regions of the country dealing with: (1) Funding for education and long term supervised residential care, (2) Availability of SSI, Social Security, veteran's benefits for children, student loans, etc. We also plan to increase awareness and to raise funds through sponsoring concerts performed by Williams musicians. All these projects will require knowledge of the regions, organizational skills, and people-power. If you are concerned about the fate of your child when she or he becomes adult, then please contact the WSF office at the University of California, Irvine, CA 91697-2310, voice: (949) 824-7259, and email:williamssyndrome@insightbb.com. It is never too early to start planning. Back to Top
What general goal do the WSA and WSF have in common?Both the WSA and the WSF aim to improve the lives of families having a member with Williams syndrome or related conditions. Back to Top
If they have the same goal, how do they differ?Whereas the WSA is involved in a wide range of activities dealing with WS, the WSF focuses more on long-range projects dealing with the late high school and adult stages of individuals with WS. Someday your child will need to live without you. The WSF is working to make certain that when that time comes, your child will have a happy, safe, interesting, and productive life. Back to Top
Please describe the differences in structure between the Association and the Foundation:The Association consists of an unlimited membership of families having a member with WS. Professionals may also participate in the Association. Members of the Association vote on a slate of trustees selected by a nominating committee appointed by the existing Board of Trustees. The members may also nominate a candidate for the Board of Trustees by petition. Once elected, the Trustees select officers, appoint committees, select and supervise a salaried Executive Director, and may choose to modify and change the by-laws. The Foundation has no members (and currently no salaried employees). It has a Board of Trustees who are elected by the other trustees. In the case of the WSF, all members are also members of the WSA. The Trustees select officers, appoint committees, and may choose to modify and change the by-laws.
Back to TopWhat is the relationship of the WSF to the WSA?The WSF was created by the WSA in 1988. The WSF identifies, initiates, funds and provides strategic guidance for major, long-range development and research projects. In general, it seeks, either by itself, or by cooperating with other organizations, such as the WSA, universities, and research institutes, to create or enhance opportunities in education, housing, employment and recreation for people who have Williams Syndrome and similar or related conditions. Back to Top
Should I join the WSA?Yes! The WSA is a key organization in disseminating timely information to families and professionals. The WSA is instrumental in organizing national and regional meetings dealing with WS. The WSF does not and will not duplicate these functions. That is one of the reasons that all members of the Board of Trustees of the WSF are also dues paying members of the WSA. The major source of written material on WS is provided by the WSA. Most of the information on WS provided by the WSF, by contrast, is available through its comprehensive web page: www.wsf.org. Back to Top
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Please send mail to williamssyndrome@insightbb.com with questions or comments about this web site.For additional information about Williams syndrome, please send an e-mail to hlenhoff@uci.edu.For contact with other Williams syndrome families --In the USA: please send e-mail to info@williams-syndrome.orgOutside the USA:
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