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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

15 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).

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.

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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2

Donor

Rating: 5

We are happy to be involved with Williams Syndrome Changing Lives! They are a valuable resource for the community and bring much attention to this rare disorder. They provide a multitude of resources and information about Williams syndrome to the public and to healthcare workers.

3

Donor

Rating: 5

My name is Sharon Fialco. I am the author of the award winning Starabella Narrated Picture Books Series with Music for children. The Starabella stories are based on the childhood music and experiences of my daughter Tara. Tara is a pianist and composer who deals with the challenges of autism. Tara has difficulties with auditory processing and social communication. Often isolated and teased at school she turned to her beloved piano to compose songs with lyrics about a musical magical world of acceptance where children played and got along and were accepted for exactly who they are. This world was more socially sensitive than the one she had to face every day. One of her songs, “Welcome to a Bright New World” inspired our family to produce the Starabella series. I wrote the stories based on the concepts in Tara’s music. Tara played 17 of the 22 songs and melodies in the series. My daughter Dana, a talented singer, wrote additional music, narrated the stories and sang the songs. My husband and I published the series. Starabella, the heroine of our books, is a little girl who expresses her thoughts and feelings by singing and playing beautiful music. She sets an example of a child who uses her talents and abilities to overcome challenges to reach for her goals and encourages other children to do the same.

I came across the Williams Syndrome Changing Lives Foundation on Twitter. Tara had previously participated with a performance group of talented people with disabilities. I recalled that two of the performers had Williams Syndrome. One young man was a phenomenal pianist, playing rock and roll music, mimicking the style of Jerry Lee Lewis. The other performer was a charming, attractive teenage girl singer with loads of personality. I came to understand that many people with Williams Syndrome have an affinity for music, many with musical talent. I contacted Penny Perez, CEO and Founder of the Williams Syndrome Foundation, thinking that the Starabella stories which feature a musical heroine would appeal to children with Williams Syndrome. I realize also that all children with and without extra challenges benefit from messages of social sensitivity that emphasize acceptance of self and acceptance of others. The books feature Starabella in her home, community and school. Penny got back to me saying that children with Williams Syndrome and autism share some challenges in common. Her son has both Williams Syndrome and autism. We decided to make the Starabella books available to families with children who have Williams Syndrome who visit the Williams Syndrome Changing Lives Foundation website and Facebook page. Penny has been magnanimous in offering to review the Starabella books for the benefit of the visitors to the website. It is our shared hope that parents will purchase the books for their children. They will know they are not alone when reading/listening to stories involving a heroine they can relate to. Children will be inspired by Starabella’s messages of acceptance and determination. And they will have fun dancing, singing and dreaming along to the 22 songs and melodies in the stories.
20% of sales will go to benefit the Williams Syndrome Changing lives Foundation.
For further information and to buy the books, please visit: www.starabella.com
Become a fan of Starabella by liking her fan page: www.facebook.com/StarabellaBooks

4

Donor

Rating: 5

I am completely impressed by the dedication of this foundation. The resources, the personal commitment and the work that is being done is amazing. I am honored to be able to be of assistance. Great work!

Previous Stories
3

Donor

Rating: 5

Great organization that is doing great things for people with Williams Syndrome. I have donated and will continue to do so.

4 John137

Donor

Rating: 5

This group hit the ground running and has grown very rapidly. After we have talked personally to the founder, we found the group to be impressive and having a passion to help other people. Patchwork Peddler is committed to helping other Special Needs organizations, we put much thought and prayer into each of our decisions. We wish that we could help everyone that is in need, but we are limited to who we can help, and we are happy to be helping WSCLF!!!

4

Donor

Rating: 5

I have experienced this organization since its inception and am continually amazed at the heart, dedication and straight forward direction the WSCLF has for its mission of providing support for WS families. Williams Syndrome is so rare that many in our communities give little recognition to the daily struggles and needs our families have. I am proud to support an organization that gives more than it takes and follows their mission with a compassion and heart like no other.

5 Jason30

Donor

Rating: 5

This is a great organization with great leadership. We are proud to be a donor of products to such a good cause.

5

Donor

Rating: 5

This foundation was one that we chose to donate to based on their assisting of children with Williams Syndrome. We donated sensory items for specific children and will continue to work with them.

5

Donor

Rating: 5

We have donated several items to the Williams Syndrome Changing Lives Foundation as we believe they are doing great things for people with Williams Syndrome.