Williams Syndrome Changing Lives Foundation

Rating: 4.96 stars   85 reviews

Issues: Health

Location: PO Box 76021 Saint Petersburg FL 33734 USA

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.
2014 Top-Rated Nonprofit
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Community Reviews

Rating: 5 stars  

1 person found this review helpful

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

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Rating: 5 stars  

3 people found this review helpful

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

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Rating: 5 stars  

4 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!!!

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1 previous review
Rating: 5 stars  

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.

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Rating: 5 stars  

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.

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1 previous review
Rating: 5 stars  

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.

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1 previous review
Rating: 5 stars  

5 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.

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

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Rating: 5 stars  

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

When was your last experience with this nonprofit?

2014

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Rating: 5 stars  

3 people found this review helpful

Our son was diagnosed with Williams Syndrome. My husband and I are both 26 and he is our first baby. We were both devastated when he got the diagnosis confirmed. He is 4 months old now and we are trying to pull ourselves together and learn all we can for our precious son. Penny has helped us so much! She talked to me on the phone and answered any questions I had and encouraged me. She shared her story and told me I could contact her anytime. She took me under her wing and it has and does help me sooo much to know that she is here and all the info on the website. She called and or texted me to check on me randomly and it was always such a relief when she did. Just to know someone was checking on me that knew what I was going through and was knowledgeable on WS meant so much to me and seriously took so much stress off of me. I honestly don't know what I would do or would have done if Penny didn't do all she has done. I can't thank her enough.

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Rating: 5 stars  

4 people found this review helpful

My niece has Williams syndrome since she was 9 years of age. Unfortunately, there were no services to assist us with the multitude of questions and resources we needed until we found the Changing Lives Foundation. Caring, understanding and always ready to assist anyone in need. Penny has been the best supporter our family needed. Her website has up-to-date resources which many of our medical and educational professionals can use. I will be recommending other Williams Syndrome families to support the Changing Lives Foundation so that they can receive solid information on who or where to go for Williams Syndrome.

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

Love it as is.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

3 people found this review helpful

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........

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1 previous review
Rating: 5 stars  

3 people found this review helpful

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.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

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1 previous review
Rating: 5 stars  

5 people found this review helpful

Listened to my concerns regarding my son and took action. Excellent service, made me feel like family.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

2 people found this review helpful

This organization provides education, support and resources to parents, families and professionals. I am proud to be associated with such a positive organization. There is so much knowledge shared, increasing the support to families impacted by WS. I am looking forward to seeing the growth and positive things this organization will accomplish in the future.

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Rating: 5 stars  

2 people found this review helpful

I am a volunteer and advisor for the Foundation and they are truly changing lives for families. They are dedicated and provide so many needed resources that are not otherwise available.

The also make sure that they have a variety of resources for parents and families.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2014

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1 previous review
Rating: 5 stars  

4 people found this review helpful

This organization has done so much for the Williams syndrome community. They know the needs and care about the families. Great Job!

How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
1 previous review
Rating: 5 stars  

4 people found this review helpful

The Mission of the foundation is very much needed in our small community of parents of kids with Williams Syndrome. They seem to understand what the needs are.

Would you volunteer for this group again?

Likely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Likely

When was your last experience with this nonprofit?

2012

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