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Williams Syndrome Changing Lives Foundation

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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.

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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.

2

Client Served

Rating: 5

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.

2

Client Served

Rating: 5

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

2 jamesct64

Client Served

Rating: 5

This foundation helped my family and I when our son was first diagnosed. We were provided with helpful information, charts and resources that we needed to best monitor the various medical concerns for him.

We would be lost without them and their website and support.

2

Client Served

Rating: 5

As a parent who has a son with Williams Syndrome, you are constantly searching for answers. Answers to why and how. Also an answer to the main question - "What can I do for my child that will help him the most." The founder of Williams Syndrome Changing Lives Foundation has been able to answer questions for my family. I got the pleasure of meeting with the founders and meeting other families in early October in an event started by the founders of this nonprofit. My wife and I just happened to be on a weekend getaway when we noticed that the foundation was sponsoring a get together. We met up with them and it was a life changing weekend for us. When you can look into the eyes of another parent and you know they understand your daily and life long struggles, you immediately become bonded with them in a way that is unexplainable. We continue to follow the families we met that weekend. Without this nonprofit, we would have never met some of these amazing families. Williams Syndrome Changing Lives Foundation is truly a big family. Thanks for everything you have done and continue to do for our families!

3 Pamela19

Volunteer

Rating: 5

Penny and her foundation have been faithful to my son and family. With up to date information on new research and we only live information from professionals to help with IEP's. Who would remember to contact me in March for summer school info.... Penny that's who.....don't know what I would do without her and my sons twin Keith....another year of awesomeness........

Previous Stories
3

Client Served

Rating: 5

Williams Syndrome Changing Lives has been there for my son when no one else was. Davion was having blood pressure issues and I needed a monitor for home to chart it. Telling Penny what was going on with Davion gave me someone to talk to that knew what I was going through since her son also ha WS and Autism which is unique for our children. Without even asking I had a monitor at my door step within 2 days, and a pre- designed chart to let me know when I should be concerned about his pressure. She also assisted with pull-ups since he had bladder issues and a sensory ball chair for school and home to help with his concentration while he worked. She is currently assisting me in getting Davion into summer camp for the second year. WSCLF is more then an asset to me and my sons life, they are irreplaceable.

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2 MelindaGlen

Client Served

Rating: 5

We love this foundation and the support they bring to families. They have provided valuable resources and support for us.

3 Mark124

Client Served

Rating: 5

Our daughter has Williams Syndrome and the support and advice WS Changing Lives offers to us and other WS families is invaluable. I'd recommend them to all directly and indirectly affected by WS, the range of information and promotional tools to raise awareness is outstanding.

2 FLHilton

Client Served

Rating: 5

Williams Syndrome Changing Lives Foundation has been a source of information and support for my family. They continue to produce valuable and practical resources for all families regardless of the ages of the children with Williams.

I fully support heir efforts and applaud them for their efforts in making a difference in the Williams syndrome community.

Previous Stories
3

Client Served

Rating: 5

Williams Syndrome Changing Lives Foundation assisted my family and continues to be a resource for our concerns and needs. This is such a needed service and has made such a positive impact for our family. We are forever indebted to them.

Penny Perez, the founder continues to be available for us and any concerns. It has truly made a difference. Thank you.

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4

Client Served

Rating: 5

I can't say enough about Williams Syndrome Changing Lives Foundation. My son has so many medical concerns and I contacted them for resources. They had someone call me and gave me hope for the future, talked to me about resources available and provided me so much information we didn't know. They helped us with WS Clinic services and resources and walked me through how to have my son seen and finally get some answers. We could never have hoped to get to see these specialists without their assistance. They have checked back in with us and let us know they are available for my family. Thank you for all you have done.