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83 Reviews
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November 23, 2014
3 people found this review helpful

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1 previous review
April 3, 2014

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 share... more

November 23, 2014
3 people found this review helpful

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!!!
April 3, 2014
3 people found this review helpful

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.

November 23, 2014
3 people found this review helpful

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November 23, 2014
3 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.
November 23, 2014
1 person found this review helpful

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November 23, 2014
1 person 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.

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When was your last experience with this nonprofit?

2014

November 22, 2014
4 people found this review helpful

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2 previous reviews - show all
March 20, 2014

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. ... more

November 22, 2014
4 people found this review helpful

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.
March 20, 2014
3 people found this review helpful

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.
September 26, 2012
4 people found this review helpful

What a truly rewarding experience this has been in such a short time. We are helping families touched by Williams syndrome by providing financial assistance, informational and therapeutic resources. Additionally, we are spreading awareness throughout the educational and medical communities.

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Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

November 22, 2014
4 people found this review helpful

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November 22, 2014
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.
November 22, 2014
3 people found this review helpful

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November 22, 2014
3 people found this review helpful

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.
November 21, 2014
3 people found this review helpful

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November 21, 2014
3 people found this review helpful

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.
November 20, 2014
3 people found this review helpful

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1 previous review
April 9, 2013

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... more

November 20, 2014
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

Ways to make it better...

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

Wish they were here in Australia as well.

More feedback...

When was your last experience with this nonprofit?

2014

April 9, 2013
2 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.

More feedback...

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

November 20, 2014
3 people found this review helpful

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November 20, 2014
3 people found this review helpful

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

More feedback...

When was your last experience with this nonprofit?

2014

November 20, 2014
2 people found this review helpful

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November 20, 2014
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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