Williams Syndrome Changing Lives Foundation

Rating: 4.96 stars   85 reviews

Issues: Health

Location: PO Box 76021 Saint Petersburg FL 33734 USA

Mission: The Williams Syndrome Changing Lives Foundation was formed to enhance the lives of children and adults living with a diagnosis of Williams syndrome by providing needed financial assistance with medical, educational, therapeutic, recreational needs and other developmental resources. In addition, the Williams Syndrome Changing Lives Foundation provides support for individuals, parents and families through outreach, and sponsored functions.
Target demographics: individuals with Williams syndrome
Direct beneficiaries per year: hundreds of families with resources and information regarding Williams syndrome
Geographic areas served: United States
Programs: Family Assistance Program assisting individuals with Williams syndrome with medical, developmental, educational, therapeutic and recreational resources.
2014 Top-Rated Nonprofit
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Community Reviews

Rating: 5 stars  

3 people found this review helpful

just want to tell people out there if you've never been on here you will definitely find your answer here, penny Perez such a great person I've met threw others on this page, I'd recommend it to others out there its an awsome page to join WILLIAMS Syndrome Changing Lives is one of the most organization I'd ever join thanks to everyone who puts in a post daily or everyday it's the most helpful page I've learn a lot so come on and join us

When was your last experience with this nonprofit?

2014

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Rating: 4 stars  

2 people found this review helpful

Williams Syndrome Changing Lives has been one of the best organization I have ever found. They are VERY informative and well educated in Williams Syndrome. Penny the president and founder is always available to help in anyway she can while dealing with her own son Keith who has WS.

My daughter is 21 (WS) started having severe anxiety about 4 mos ago, I contacted Penny for assistance in getting a weighted blanket and noise reduction headphones for her, in a matter of a week Penny had them ordered and on their way to us. Williams Syndrome Changing Lives is simply AWESOME!! Hats off to them!!!

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Role: Professional with expertise in this field
Rating: 5 stars  

2 people found this review helpful

This organization has been on the forefront of getting information and services to parents with Williams Syndrome. I was contacted to provide a legal seminar regarding education for individuals with disabilities. I was very impressed.

Mario M. Blanch, Esq.

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Rating: 5 stars  

2 people found this review helpful

Williams Syndrome Changing Lives Foundation is a wonderful organization! It provides a wealth of information for parents and medical providers. As a parent of a son with Williams Syndrome it is wonderful having a resource like this when I have questions. Also being able to connect with other Williams Syndrome parents is priceless.

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1 previous review
Rating: 5 stars  

5 people found this review helpful

This is a wonderful organization that is doing some much to spread awareness and assist family with Williams Syndrome.

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

2 people found this review helpful

WS Changing Lives Foundation is an excellent organization that really helped us when we were searching for a support group. The information they offer, the awareness they create, and the friendliness are a few of the amazing qualities that make them who they are! They do not only offer information for WS families, but also provide practical advice about various issues WS families face.

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Rating: 5 stars  

2 people found this review helpful

We are happy to be involved with Williams Syndrome Changing Lives! They are a valuable resource for the community and bring much attention to this rare disorder. They provide a multitude of resources and information about Williams syndrome to the public and to healthcare workers.

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Rating: 5 stars  

2 people found this review helpful

My daughter was diagnosed at the age of 14 and she is now 25. I wish there had been this foundation when she was younger. There is so much information provided that we need. They provide information on medical and day to day issues that arise. Great support from other parents and we have been connected with many other families through the Williams Syndrome Changing Lives Foundation.

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Rating: 5 stars  

2 people found this review helpful

When our son was first diagnosed with WS. I was so afraid to reach out to others at first. Why? I guess I was so unsure of the future I had to take it all in, but finally when Wesley turned about 2 I started reaching out, this organization gave me the first open door to other families who was experiencing the same challenges ( and blessings) as ours. The educational information is easy to understand and Great! I researched the information as soon as he was diagnosed! The support and love has helped me be more open and accepting to this wonderful journal my son is taking me on! I Have met a few families and Penny now, Wow what amazing Parents and people! I just wish I would not have waited so long! Thank you

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Role: Professional with expertise in this field
Rating: 5 stars  

2 people found this review helpful

We are honored to be working with this wonderful foundation. As a foundation partner, we look for organizations with a similar mission and we believe that this Foundation far exceeds that. They have a commitment to the individuals they serve and are an invaluable asset to the Williams syndrome community.

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Rating: 5 stars  

2 people found this review helpful

My dear friend Keith is so cute and I would love to meet him and he is always smileing and love in kind little boy :)

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