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

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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Rating: 5 stars  

3 people found this review helpful

My grandson had WS and his parents rely heavily on Changing Lives for information, education and medical referrals and resources as well as support. We would be lost without them. Thank you for you kindness and your willingness to always be available and guide us in the right direction.

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1 previous review
Rating: 5 stars  

3 people found this review helpful

I am very thankful for this foundation and it's work with my family. We knew very little about Williams Syndrome and what to expect. They walked us through so much and Penny was available to answer so many questions and provide information to our family.

We can't thank you enough and thank you for the resources.

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

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

4 people found this review helpful

I am pleased to find the Williams Syndrome Changing Lives Foundation. My grandson has Williams Syndrome and the support this foundation offers is unbelievable. They have been available for answers and concerns for my grandson and they are available to provide financial assistance if it is needed for him. I am so thankful this is here and available for our family.

I've personally experienced the results of this organization in...

My grandson's needs and this foundation helping his parents with their questions and concerns.

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2012

How did you learn about this organization?

FaceBook

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Rating: 5 stars  

4 people found this review helpful

The WS changing lives foundation has been extremely supportive when I need information, a shoulder to listen and a place where I can connect with other families. It is an important tool and support system for myself and my family.

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Rating: 5 stars  

2 people found this review helpful

I can honestly say that I would be lost without this foundation. I contacted them to assist my husband and I in understanding Williams syndrome and all of the obstacles we were up against. We were completely overwhelmed and did not know where to even start to get information and help. I will be forever thankful for all that they have done for my family and continue to do.

When was your last experience with this nonprofit?

2014

Was this review helpful? 
Rating: 5 stars  

4 people found this review helpful

Williams Syndrome Changing Lives Foundation has been amaxing for my family. Penny and the foundation have been there for us since the day our son was diagnosed with Williams Syndrome. We've been given information to provide our pediatrician with regarding treatment, advice about what services to request, and overall support and guidance. I've never had a question they haven't been able to answer. The newsletters they send keep parents informed and up to date on information. They've also had webinars to help parents understand legal matters pertaining to children with Williams Syndrome. I can honestly say without this foundation I'd be overwhelmed and lost in the diagnosis instead of being well informed and in control. I can't thank them enough for all they've done.

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Rating: 4 stars  

3 people found this review helpful

Williams Syndrome Changing Lives Foundation has been a wonderful source of information as well as inspiration. Our daughter is 11 and to know that someone is there to ask advice, offer support and be non judgemental about anything is just so comforting as we travel through this journey with our daughter. Thank WS Changing Lives Foundation for all that you do.
Tanya (daughter Nadena 11) from Australia

If I had to make changes to this organization, I would...

Wish they were here in Australia as well.

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

Williams Syndrome Changing Lives Foundation is a wonderful resource of not just knowledge and understanding but so much more. They know where a family is coming from when they get a diagnosis and how distressing it can be to suddenly find that your path in life has changed! They support families in hard times both medically, financially as well as emotionally. Thank you WS Changing Lives Foundation for the wonderful work, support, assistance and HOPE that you give to so many families including my own.

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2013

Was this review helpful? 
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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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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