LGS Foundation

Rating: 5 stars   10 reviews

Issues: Health

Location: 192 Lexington Ave Suite 216 New York NY 10016 USA

Mission: The LGS Foundation is a non-profit organization dedicated to providing information about Lennox-Gastaut Syndrome, a rare and severe form of childhood-onset epilepsy, while raising funds to pursue research, services and programs for LGS patients and their families.

2011 Top-Rated Nonprofit
Write a Review
Invite people to share their experience with this nonprofit!

Promote This Nonprofit

GreatNonprofits badges allow you to raise awareness of your favorite nonprofits on your own web sites!

Review this charity on
GreatNonprofits

Community Reviews

Rating: 5 stars  

My son was dx was LGS at age 2 and we went over twenty years not knowing others, it is such a terrible disease and no know ones what your going through, it really is so hard to deal with. but the lgs foundation helped me when i needed them most and helped me meet other families. they also keep me updated of news and information thoruhg there website and newsletters. i hope to go to there conference in november it looks fantastic.

I've personally experienced the results of this organization in...

support

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

no changes

Was this review helpful? 
Rating: 5 stars  

The LGS Foundation helped my family cope with the daily challenges of my daughter's disorder. They provided us with pamphlets which I hand out almost every day to get people to better understand what LGS is. They also faciliate communication between parents which is so incredibly important. I found them on facebook over a year ago and have been able to connect with many other parents around the UK. I also use their chat room on their website and it's been a big help.

I've personally experienced the results of this organization in...

Support and information!

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

Nothing.

Was this review helpful? 
Role: General Member of the Public
Rating: 5 stars  

LGS member, WF, reached out to us when she heard we had a daughter/s being monitored and evaluated for possible concerns. She asked many questions, listened and then shared her experiences, offered important insight, resources, assistance, and valuable information. I am so thankful she reached out to us, invited us to participate in LGS events and introduced us to other members who were also very helpful, interested and compassionate. This group is quite unique and amazing!

I've personally experienced the results of this organization in...

I am so thankful they reached out to us and took an interest in helping us understand important signs and symptoms that warrant further investigation!

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

None--I was very impressed with the group's passion, hard work, attention to detail, professionalism, and exceptional work!

Was this review helpful? 
Rating: 5 stars  

My son's condition breaks my heart daily-Christina Sanincencio and the LGS Foundation help to put it back together again so I can continue to move forward to help him.
They are knowledgeable, hands-on, nurturing. If you knew what it was like to watch your child suffer, the comfort, strength and practical help they provide is truly a blessing.

I've personally experienced the results of this organization in...

The help they provided to me and to my son in advocating for him in the school system.

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

Find more donors to provide this worthy organization with all the funds it needs.

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

How did you find this group?

Google

What, if any, change in your life has this group encouraged?

To stay positive, and always offering practical advice that you may be too upset to even think about

When was your last experience with this nonprofit?

2011

Was this review helpful? 
Rating: 5 stars  

My son Christopher was dx with LGS at age 3. Because it is such a rare form of epilepsy, it was hard to get information about the syndrome, treatment options and support. When I learned about the LGS Foundation through its President, Christina, I felt like I had found family. Finally, there were others who knew exactly what I was feeling, and who could share with me what worked or didn't work for them. I have been fortunate to watch the foundation grow in membership and outreach, in large part due to the passion and commitment of the Officers. I hope this is only the beginning of more great things to come!

I've personally experienced the results of this organization in...

direct ways. I was able to directly meet with other LGS families.

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

want to see it have a regular source of funding so that it can continue and expand its great work.

Was this review helpful? 
Rating: 5 stars  

My beautiful 9 year old daughter Gia was diagnosed at 6 months of age with epilepsy.
As a parent watching Gia have seizures was one of the most frightening things I have ever been through in my life, You battle fear, anger, resentment and so many other emotions, but you always feel alone because none of your family or friends are going through the same thing.
I remember when I met Christina, President of the LGS foundation, I felt like someone finally understood what I was going through and quickly realized that I had finally found a group of people that understood me and helped me to be a better advocate and parent to my daughter.

I've personally experienced the results of this organization in...

I decided to join the foundation as the Officer Of Advocacy so that I can give back to all the other families out there and help parents to be better advocates and parents to all the children out there battling LGS.

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

Move them to Long Island.

Was this review helpful? 
Rating: 5 stars  

My daughter is 21 years old and was diagnosed with LGS only three years ago. I had never heard of LGS until the day she was diagnosed. I went home and looked on the internet to do research about this disorder and there I found the LGS foundations website. I emailed the President of the foundation, she got back to me the same day and every since that day my life has changed for the better. I know my purpose now. I am always made to feel i am never alone in this battle with LGS. I have been able to get support and give support through the lgs forum and social networks. I am now on the board and will be forever committed to raising awareness ,showing support to lgs families and raising funds for research. This foundation has truly changed my life!!

I've personally experienced the results of this organization in...

In my everyday life travling this Journey with LGS

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

Change nothing, I want to just help it grow

Was this review helpful? 
Rating: 5 stars  

The LGS Foundation is a God-send nonprofit organization. When my now 18-year old son was diagnosed with LGS about 6 years ago, we didn't know much about LGS at all and felt so alone and confused. Thanks to this foundation, we are now so much more informed about this condition, have met and shared with other families who are also dealing with it, and will always have a wonderful resource which provides the latest news and updates concerning anything and almost everything relating to LGS.
The president and executive director is a sincere and kind young woman who truly wants to educate and raise awareness about Lennox-Gastaut Syndrome. She has organized a support group of families in my area which has been absolutely wonderful. Nothing helps more than sharing with others who truly walk in the same shoes. The LGS Foundation is definitely a great nonprofit!

I've personally experienced the results of this organization in...

my daily life experience with raising a child with LGS.

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

not change a thing. This nonprofit organization is doing everything right!

Was this review helpful? 
Rating: 5 stars  

My 13 year old son with LGS and I want to express our deepest gratitude to your foundation for having provided us with so much support during our many months of tribulations with the public school system. You gave mini seminars to teachers and para-educators, participated, via phone conferences, to our EIP meetings, and help us all along teaching about behavioral seizures. In fact, it is often so hard to explain my son's condition that I send people directly to your web site so they can clearly be informed about LGS.

You are the perfect example of what a nonprofit is about.

I've personally experienced the results of this organization in...

Daily life

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

nothing

Was this review helpful? 
Rating: 5 stars  

The Foundation is VERY committed to its goal of raising awareness of LGS, providing support for LGS families, and raising funds for additional research. As a board member, and participant in the many LGS foundation events, I have first-hand experience of the hard work and dedication that goes into the events, and the positive success of each event. The creation of this Foundation has given LGS Families the ability to reach out to other LGS families who have common questions, needs, and concerns about treatment, services, and options. I have heard from families that prior to the Foundation they felt "alone", and now after meeting with other LGS families feel like they have gained a family and the comfort of knowing someone is always there to listen or give advice.
I am very proud to have learned so much about LGS through the Foundation, so I can in turn educate others. I look forward to the future of the the Foundations continuing growth and success.

I've personally experienced the results of this organization in...

I have seen the positive affects of support the LGS families give each other at the various events. Funding for research has led to implementation of new drugs and/or therapies to control seizures and other effects of LGS.

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

I would not change anything about the Foundation.

Was this review helpful?