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   Featured Review

7 people found this review helpful

Williams Syndrome Changing Lives Foundation helped us in a time when we thought there was no help. They offer educational material and HOPE for parents who first find out they have a William's Syndrome Child. They send out newsletters keeping parents informed of current WS news and inspirational stories to keep our chins up. The CEO, Penny Perez, is nothing less than a Saint. She is not only the CEO she is a parent to a child with William's Syndrome. My wife regularly seeks advice from her from advocating for our children to other general parental concerns. The non-profit is well executed and managed and makes a real difference in people's lives. Thank you Penny and William's Syndrome Changing Lives Foundation for all that you have done to help our family and our son Ethan (16mo old).

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

Life-changing

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?

2013

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Rating: 5 stars  

1 person found this review helpful

Williams Syndrome Changing Lives Foundation has helped me a lot with my son Rudy..it has great resources.

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Rating: 5 stars  

2 people found this review helpful

The Williams Syndrome Changing Lives Foundation has done a wonderful job in raising awareness of Williams Syndrome and in providing assistance to individuals with Williams Syndrome. The Foundation provides an enormous amount of information on their website and interacts very often with their large following on Facebook. It has been our pleasure to donate goods for the past several years, and look forward to working with such a great non-profit in the future.

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Rating: 5 stars  

1 person found this review helpful

The William Syndrome Changing Lives Foundation has been a wonderful tool for my family and friends. My daughter Mazzi is 12 and has WS. During times of confusion I ask questions and get caring, loving and compassionate responses. I have also been able to meet families in my city because they are apart of the group. Most importantly, my family gets to see first hand of the struggles that parents of WS have. They also get hope by seeing the milestones each child passes and celebrate with our WS families. At this point I wouldn't know what to do without Penny Perez and the people of this foundation. I highly recommend them and know that no matter what I'm going through they are there for me and most importantly, Mazzi. Thanks for allowing me to share, Leigh

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Rating: 5 stars  

1 person found this review helpful

I am a volunteer and parent to a Williams Syndrome child and I can't thank Williams Syndrome Changing Lives enough for all they do in our WS community. The constant awareness efforts, support and information is wonderful, practical and useful. We have found so many resources through the foundation and we are forever grateful!

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

2 people found this review helpful

I am honored to work with Williams Syndrome Changing Lives Foundation. Their awareness efforts and community reach is frowing rapidly and very muxh needed.

Support services are outstanding and we look forward to our continued work with them.

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1 previous review
Rating: 5 stars  

3 people found this review helpful

I have worked with Williams Syndrome Changing Lives Foundation on a couple of projects and have found them to be completely professional and with a very clear vision.

I am honored to assist them with their efforts and will continue to do so. We will continue to reach out to them for information about Williams syndrome and their resources.

How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

2 people found this review helpful

The William Syndrome Changing Lives Foundation advocates for their cause is a very professional way. We are always impressed by their Facebook posts and their web site. The people behind their newsletter have to be congratulated and thanked for publishing such a first class way of getting valuable information to their subscribers.

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1 previous review
Rating: 5 stars  

4 people found this review helpful

The Williams Syndrome Changing Lives Foundation with Penny Perez as CEO & Founder has an excellent Newsletter. Their newsletter is educational and very interesting! Ms. Perez has beneficial posts on Facebook and LinkedIn for parents with children with special needs. Families with a child with Williams syndrome must definately join this group. Our company, SentioLife Solutions, Ltd., has donated sensory chewelry necklaces for events organized by this foundation and find the folks working there very efficient and knowledgeable. Hope you have a great 2014!

Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2014

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1 previous review
Rating: 5 stars  

3 people found this review helpful

The William Syndrome Changing Lives Foundation with Penny Perez as CEO is a valuable source of parenting information. Their Newsletter is just as eye-catching and well organized as many magazines. Parents raising children with special needs appreciate the information on their site, the Newsletter, their LinkedIn Group, Facebook Page, etc. This non-profit foundation is truly centered on increasing Williams syndrome awareness, increasing education for families, the public, physicians and therapists.

Will you volunteer or donate to this organization?

Unsure

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

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1 previous review
Rating: 5 stars  

4 people found this review helpful

We are happy to donate KidCompanions Chewelry to the William Syndrome Changing Lives Foundation for their fundraising project. We were impressed with the professional look of their Facebook page and web site. We felt this foundation has capable, caring parents behind it trying to make the lives of others easier and better. Glad to collaborate with such a group!

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

2 people found this review helpful

I am happy to be a monthly donor to this organization. I have found them to be ethical and true to their mission. I am both a personal donor as well as a company donor and will continue to do so to enhance their very important work.

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1 previous review
Rating: 5 stars  

3 people found this review helpful

I am honored to assist WSCLF again this year in their awareness campaign. What a worthy cause! Thank you for allowing me to be part of it.

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
1 previous review
Rating: 5 stars  

3 people found this review helpful

I am proud to donate to this wonderful organization that is committed to helping these kids and adults in need. I will continue to donate as I see the impact it is making in the life of so many families.

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

3 people found this review helpful

I found out that my son had williams syndrome not knowing anything about it and being terrified not knowing anything about it, I turned to the williams syndrome page and found out everything I needed to know it's scary when a doctor diagnoses your child with a rare disorder and have no where to turn to for help and support, thank god for this page cause I was truly stressed and scared at the same time when we found out

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Role: General Member of the Public
Rating: 5 stars  

3 people found this review helpful

Williams Syndrome Changing Lives Foundation provides invaluable resources to parents to assist with their loved ones from diagnosis to adulthood through infographics and support groups. Many individuals have been provided with once in a lifetime opportunities that the may not have been possible without the assistance program or Project 7.

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