When my daughter was diagnosed with Lennox-Gastaut Syndrome (LGS) in 2021, life was crashing down around us. Thankfully, we quickly found the LGS Foundation, which provided us with the support we desperately needed. It gave us clarity, hope, and—most importantly—a community that has become one of the most significant parts of our lives.
Being able to access the countless resources the LGS Foundation offers and witnessing their dedicated work to find a cure, through funded research and dedicated medical professionals, has been inspiring. This year, we had the incredible opportunity to attend the biennial Family and Professional Conference in Phoenix. Connecting with and meeting so many wonderful people who understand us has been life-changing!
I found the LGS Foundation when my son was first diagnosed in 2017. From the moment I attended my first family conference, I felt like I had found this community and family that truly knows and understands what we are going through. The Foundation has formed a coalition of highly skilled and knowledgeable medical professionals who are passionate about better treatments and outcomes for those living with LGS and ultimately a cure. I am most excited about the cutting edge research that the LGS Foundation is funding. I volunteered for many years as a family ambassador with the Foundation and enjoy helping families along this difficult journey. It's exciting to see the direction we are headed and I am proud to be a part of this amazing community.
The LGS Foundation is an amazing organization dedicated to improving the lives of individuals and their families who are living with this catastrophic epilepsy. Before we found the Foundation, we were all alone. Now we have a community of support. They also fund cutting edge research in LGS that no one else is doing! We are so grateful to be a part of such an amazing organization of truly caring and committed individuals.
The LGS Foundation has changed our lives! We were alone and scared. We need answers and support. We have been with the foundation for many years and continue to be amazing at the impact and support the foundation has had in our lives and is having in this rare community. We also volunteer and enjoy encouraging new families in their journey through this difficult journey with LGS. We love the staff and the direction things are going in. I am so proud to be part of this amazing community! I'm excited about the days to come!
My son is 38 and an LGS warrior! Our family has been blessed to be involved with the Foundation for several years. We have found a new "family" - people who understand our life and what we go through on a daily basis. We were honored to be able to attend the conference this year and to learn so much that has helped our son live a better life and helped our family learn new ideas and concepts that have assisted us on this difficult journey.
The Foundation provides resources and supports for so many families and individuals. We see it all the time. The work they do, both obvious and behind the scenes, is changing the world for individuals living with this syndrome. We are grateful every day for the LGS Foundation and the wonderful people who run it.
Picture of my son because he is handsome!
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My son is 37 years old but only diagnosed with Lennox-Gastaut Syndrome 8+ years ago. Having multiple seizure types daily -often hundreds a day, since 4 years old, our experience with disability was quite unlike the other families that I encountered. My son learned and lost essential skills such as eating and walking on a daily basis. When we discovered the LGS Foundation, our entire family was grateful to find that we were not alone. We found other families and individuals who understood the challenges of medication refractory epilepsy and all of the accompanying conditions.
The staff of the Foundation has offered us support and understanding, but also hope.
Hope is so hard to come by in the world of complicated disability, and support even more so. My son is one of the "older" adults with LGS. We are grateful to have this title and grateful to continue this journey with the support of the leadership of the foundation and the wonderful staff and volunteers.
My sister was recently diagnosed with LGS. My family and I don’t know other people with this condition. We are trying to learn as much as we can to help our girl. A few day after her diagnosis, I logged into instagram and found this page. It was such a relief to me. All of the sudden, this new challenge we were walking through felt a whole lot less lonely. Seeing other kiddos and their families thriving filled me with a new kind of hope for my girl. It was even more encouraging to find out that there’s
continuous research. This foundation has been so helpful for us as we begin this new chapter with our girl. Thank you!
My brother was diagnosed with LGS and the LGS Foundation had been an extraordinary resource to me as I am an LGS sibling. The picture I added was at the very first LGS conference we attended and we have attended every other event we can since then! I have met so many other LGS siblings and have made lifelong supportive friendships. I have been able to volunteer at multiple events and have always been treated with kindness and love from the foundation and other LGS families. I am so thankful for the community found within the LGS Foundation and the continued research they do to make the world a better place for LGS kiddos and their families.
The LGSF has been a huge blessing to our family. They provide so many resources and a way for families affected by the LGS diagnosis to connect and learn from each other. They help you advocate for your loved one, they are on the cutting edge of new treatment info and they fundraise for research projects that will help others in the future. My 18 yr old son has greatly benefited and continues to benefit from the LGSF!
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My son was diagnosed with LGS at 5. We came across the LGS foundation a few years later and what a difference it has made in our lives! There is so much info and resources in one place! It used to take forever to research and find new options. The support I get from and can give to other caregivers through the foundation is amazing.
Mi hijo, José Arnal fue diagnósticado a la edad de 3 años, tiene ahora 9. Desde que encontré la Fundación, han sido muy amables, atentos y de mucha ayuda. También nos han ayudado con equipo para nuestro hijo. En sus actividades hemos conocido a otras familias con las cuales podemos intercambiar conocimientos y dudas. Gracias.
My son is 5 and was diagnosed with epilepsy around 9 months. We recently found LGS foundation and thankfully for all the information they provide.
My daughter was diagnosed with epilepsy at 18 months old, at 3yrs oldnshe was diagnosed with LGS. This foundation has helped us with the struggles we have faced. They offer many was to support families, the best, in my opinion, is the FB page where families can communicate and support each other
My son Leo was diagnosed with LGS when he was only 1 year old. You feel desperate and lost. I found the LGS Foundation and the amount of support and information received through all these years has been invaluable. I even have made the bestest of friends in the parent support group. The Foundation help us navigate this complicated condition and they keep fighting to find new treatments, resources and a cure that we desperately need. Thank you LGS Foundation.
I support the LGS Foundation with an annual gift because they are advancing critical research and truly putting families first. They work hard to keep overhead low so that donations go to fund the programs that benefit the individuals and families impacted by Lennox-Gastaut Syndrome. They also do a great job of communicating the impact the donations make, which I greatly appreciate. Sometimes you donate to a nonprofit and all they do is continue to ask for more money, the LGS Foundation is not like that!
My son was recently diagnosed with Lennox Gastaut and the LGS foundation has been incredibly generous in sharing information not just for us parents but also things to help his siblings understand. The support really helps you feel less alone when dealing with such a all encompassing syndrome.
My daughter has had seizures since before her 2nd birthday, and was diagnosed with LGS when she was 18. We think she's had LGS for many years before the actual diagnosis, it was a new Dr in a new hospital that diagnosed her. Even though we thought she had it, it felt like a kick in the gut actually hearing it. We are so very thankful for the LGS foundation, it has taught us so much, it's been a place to cry, vent, laugh, and belong. No where else have I ever found anyone who walks our mile, but this group, proves we are no alone.#Thankful
My son was diagnosed at 7 years old. He lived a life of full gratitude and happiness. He was always the brightest star in the room. But, the "LGS Monster," that's what we called it, terrorized him EVERY day of his life. Not one day did he ever get a break. In fact, when he was actively dying in the hospital, he endured a sub clinical seizure (a seizure state that cannot be seen with the naked eye and cannot be stopped. Even though LGS did not directly contribute to the falling of this hero, the complications of the LGS Monster did. His ultimate fate was intestinal shutdown. People in the LGS community don't talk about this enough. I have noticed a correlation between the syndrome and intestinal problems/complications. He was just 20 years old when he took his last breath. His brothers, cousin, myself, and my partner still mourn his loss and it's been over 2 years now. The one thing I know I did right, finding the LGS Foundation and communities on facebook. I have learned, taught, researched, lent a listening ear, prayed, and given my own opinion on these platforms. I can never say too much regarding my experience with this foundation. They are all good, intentional, and nurturing experiences. I will always do my best to contribute to the LGS foundation in any way I can. This organization has been a beacon of light and has also been a referral source to many other organizations tailored to my needs, my family's needs, and of course my late son Joshua's needs, always. Thank you so much for being a part of our lives, we truly feel like family. I became a member early on when LGS was just becoming a "thing." I will never forget the countless people who have been there in my time of needs in regards to my late son and family. I will continue the fight, as long as I have breath.
The LGS Foundation has been an important part of my life and my LGS daughter's life for much of her life, luckily. We were blessed to have been found early on by the founder Christina Saninocencio. She was looking to form a Chicago based family support group and somehow she found me. It has been so wonderful to see the Foundation grow into what it is today and I'm pleased to have been a part of it. The Foundation has given me personally so much support. It's so important to connect with others who are experiencing the same thing, to be able to share resources with someone who understands and to cry and laugh together when things get really challenging. The Foundation has also allowed me personally many opportunities to grow, learn, gain confidence and help others with what I've learned, especially with who are just joining "this club." There's so much more that I could share here. Finally though, I am especially proud of our Executive Director Tracy and our team of LGS moms who now work for the agency. It is with their life and professional experience that this the LGS Foundation has grown to known around the world, supporting families and enriching the lives of our loved ones, especially with the international conferences that are held every 18 months. Thrilled to be a part of the growth still to come! Hope for the future feels good! Diane, Ed and Lindsay Hettasch
My daughter was diagnosed at age 4, we went through the firstvyears researching the new diagnosis alone. Then we found our tribe! The foundation has provided so many resources, education and support, along this journey. We have a platform for our purpose and are involved to help those who come behind us, so they have a one stop shop when they need it most.
The LGS Foundation came to me shortly after my son was diagnosed. They were a great source of information on the diagnosis. The best part is the support and connections they have helped me to make. They have provided me with a safe place virtually in a closed caregiver group and at the Internation LGS Conference held every 2 years. My son and I have ventured on this unpredictable journey with the support of Ambassadors and LGS Community members. I would not have been able to advocate for my son and his needs if I had not had the LGS Foundation in our life.
The LGS Foundation is one of the most fantastic and helpful organizations I've ever been involved with... For the first time in 18 years, I felt like I finally found "my family" after attending the LGS conference in Ohio in 2014. That was the first time I met other families who knew what we were going through, and the first time I was in a room filled with people who faced the same struggles as I did. I was awarded a scholarship from the LGS foundation to help me attend the conference and if I didn't receive that, I wouldn't have been able to go.
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.
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.
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!
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.
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!
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.
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!!
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!
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.
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.