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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

85 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 Katia I.

Volunteer

Rating: 5

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

2

Donor

Rating: 5

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.

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!

2 Dawgs64

Professional with expertise in this field

Rating: 5

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.

Previous Stories
3

Professional with expertise in this field

Rating: 5

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.

2 Kids Companions

Donor

Rating: 5

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.

Previous Stories
4

General Member of the Public

Rating: 5

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!

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2

Donor

Rating: 5

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.

Previous Stories
3

Donor

Rating: 5

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.

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3 Desira I.

Volunteer

Rating: 5

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

3 Becki2

General Member of the Public

Rating: 5

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.

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 Brandi J.

General Member of the Public

Rating: 5

Williams Syndrome Changing Lives Foundation is a true blessing to many. They provide excellent educational materials, fantastic resources and a wonderful support page. WSCLF has given me the opportunity to connect with thousands of other parents & caregivers who face the same daily challenges as myself. Thank you WSCLF for the wonderful support and knowledge you provide on a consistent basis.

Previous Stories
2

General Member of the Public

Rating: 5

The care, support and information Williams Syndrome Changing Lives Foundation provides is outstanding and second to none. They offer top-notch infographics, articles and other resources age-specific for our WS children, along with their physicians and educators. It's not about contests & give-aways at CLF. It's all about getting our children the necessary care they need and their parents the much-needed support they long for. THIS is just what I've been looking for! There is true support and concern for my son and myself.

4 Jennifer312

Volunteer

Rating: 5

I have volunteered the WSCLF as admin of the support board and as a recreational advocacy coordinator for quite some time. While I have been able to help families that have received or awaiting a diagnosis get the information they need to make educated decisions about medical care and assists families in finding athletic programming for their WS kids, but as a parent of a WS teen I have been able to find comfort and belonging in this group of people. As parents we face special and specific challenges in raising our children to reach their potential. It's a struggle we all face and share and it's as unique as the children we parent. The network CLF is able to provide to it's members is an outstanding one of kind gift to each of us. Because I can share stories and learn from other parents - I am stronger and I am inspired! Thank you Penny for founding this amazing community!!!

Previous Stories
3

Volunteer

Rating: 5

I personally get alot out of the online facebook support group through CLF. The connections I've made help me feel like part of a bigger community.
CLF also has excellent infographics that I've shared with my child's doctors and teachers. The information helps them to quickly gain insight into my child and her needs.
The live Q&A sevenars are always helpful because they give attendees a chance to ask professionals questions of concern.

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

Volunteer

Rating: 5

Williams Syndrome Changing Lives Foundation provides assistance to families finding solutions for family members diagnosed with Williams syndrome. This foundation helps many families by providing financial assistance in addition to providing vital information to parents and medical professionals helping those diagnosed with this rare disorder.

This organization was founded on the belief that a community of families could help other families dealing with this rare disorder by sharing information and experiences. With this in mind, and through collective experience, we can help educate medical professionals and parents with children diagnosed with Williams syndrome in order to enable those diagnosed with Williams syndrome live life to its fullest potential.

Previous Stories
3

Volunteer

Rating: 5

I am proud to be a part of this organization for various reasons. This organization has been able to provide information and support to parents and caregivers of individuals with Williams syndrome.

Consequently, over a short period of time, this organization has managed to corral the community to create a support group to help others handle the daily challenges and collectively cheer when milestones are met.

Above all, this organization has assisted financially challenged families with their needs to help their children with Williams syndrome live better lives.

We are truly changing lives.

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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.

4

General Member of the Public

Rating: 5

The Williams Syndrome Changing Lives Foundation is one of the most responsible, ethical charities I have ever encountered. I have known Penny Perez, founder of WSCL, for over 30 years, and when her own son, Keith, was diagnosed with this disorder, Penny was not satisfied to just find answers for herself, but was determined to help other families affected by Williams Syndrome as well. That's the type of kind, selfless person that she is. As such, when I donate to the Williams Syndrome Changing Lives Foundation, I know without a doubt that my donation is going directly where it is supposed to go - to help families affected by Williams Syndrome. I know that we can expect impressive and great things from this foundation in the future.

3 Pamela89

Professional with expertise in this field

Rating: 5

Penny Perez and the Williams Syndrome Changing Lives Foundation does exactly what its name suggests! They actually use the funds they acquire to directly help people and families in need who are affected by Williams syndrome to help change their lives in a positive manner. In addition to raising awareness, the foundation runs support groups, sends children to camp, features newsletters, holds webinars with professionals who can provide guidance to families, and interacts directly with their members on a daily basis and much, much more. The non-profit organization is run professionally and transparently as well as with passion and love. Penny's inspiration for starting this foundation came from her own adorable son who was born with Williams syndrome. Faced with this, she soon recognized the need for additional support within the Williams syndrome community and founded the Williams Syndrome Changing Lives Foundation. The foundation has helped so many people in so many ways. If you are looking to donate to a worthy cause, please consider the Williams Syndrome Changing Lives Foundation.

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.

3

Volunteer

Rating: 5

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