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Nonprofit Overview

Causes: Health, Specifically Named Diseases Research

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.

Community Stories

26 Stories from Volunteers, Donors & Supporters

7 Tyler5

Client Served

Rating: 5

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).

1 Leigh D.

Client Served

Rating: 5

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

1

Client Served

Rating: 5

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!

3

Client Served

Rating: 5

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.

Previous Stories
3

Client Served

Rating: 5

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.

Read more
4 Nicole116

Client Served

Rating: 5

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.

2

Client Served

Rating: 5

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.

4

Client Served

Rating: 5

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.

3 Tanya C.

Client Served

Rating: 4

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

Previous Stories
3

General Member of the Public

Rating: 5

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.

2 Ruth31

Client Served

Rating: 4

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!!!

2 Caroline16

Client Served

Rating: 5

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.

Previous Stories
5

Client Served

Rating: 5

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

2

Client Served

Rating: 5

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.