Thank you for the many ways you give to the LGS Foundation. Because you give, we can give to others.
We invite you to follow throughout December to celebrate 12 important moments we’ve impacted together.
Please give, and share these moments with people you know – because Every Moment Matters.
A Special Message from our Executive Director, Tracy Dixon-Salazar, PhD
On the First Day of Giving – November 29, 2022
“After our twins were born, one was assessed as healthy and thriving. Then came a moment when our second little warrior was diagnosed with LGS and now faces a life of uncontrollable seizures and developmental delays. We were overwhelmed with the unknown and the many questions regarding our next steps.
At the Conference, we appreciated many moments to connect with doctors, find helpful resources, and learn from other LGS families. This experience is helping us navigate the challenging LGS diagnosis and treatment journey.”
On the Second Day of Giving – December 3, 2022
“We have been fighting the LGS battle alongside our daughter, Olivia, for eighteen years. Like the other dads, there have been many difficult moments in our journeys that may stem from constant changes in seizure activity, behavioral issues, lack of time with our wives, or other issues. We vent or discuss a new scientific study that could be the ONE to benefit our child!
Through this online platform, we experience moments of hope and encouragement as we learn from one another and remember that we are NOT fighting this battle alone.”
On the Third Day of Giving – December 6, 2022
“During DBS, there is a moment when a wire is surgically implanted through a hole in the skull to electrically stimulate the thalamus. We are looking into ways to optimize this stimulation for LGS patients and significantly reduce seizure activity.
Our research has led to DBS implantations being performed safely and with greater accuracy and has paved the way for medical centers worldwide to adapt our imaging and surgical approaches.
The LGS Foundation is an invaluable source of advice for clinical and research priorities that matter most to families, and we strive to focus on those areas of greatest need.
This RESEARCH is leading to more hopeful moments for those with LGS by reducing seizures and improving their quality of life.”
On the Fourth Day of Giving – December 9, 2022
“There have been exciting moments as our family found hope in a treatment that propelled our son to reach an almost impossible milestone -200 days seizure free! This treatment win came after years of scientific RESEARCH. Cash loves Kindergarten! This summer, we were finally able to take a family vacation, and Cash dipped his toes into the ocean for the first time.
Many more moments of RESEARCH are needed to produce more hopeful outcomes for all LGS families who know that giving up is not an option!”
On the Fifth Day of Giving – December 13, 2022
“There was a moment after Mason’s diagnosis when I became depleted and desperately lonely. Every moment of every day was consumed by LGS. I felt my only purpose was to be a caregiver. Then came the moment I learned about the Ambassador Program, and I found a new purpose -using experiences that once consumed me to be a supportive shoulder for other caregivers.
LGS caregivers need more moments that help move us from a space of suffering and isolation to one filled with the light of hope, purpose, and family.”
On the Sixth Day of Giving – December 17, 2022
“Many emergency moments occur in our house when rescue medications will not stop Jackson’s seizures, and we must rush him to the hospital. Sadly, the kids now relate an ER visit with Mom or Dad being with Jackson and away from them for many days at a time. There was a moment this summer when the kids attended a VIP Sibling Camp and enjoyed fun activities with other LGS sibs.
The Foundation leadership team cares deeply for our kids and coordinates moments to address their unique needs and provide special attention that often is not available at home.”
On the Seventh Day of Giving – December 20, 2022
On the Eighth Day of Giving – December 23, 2022
“In the excruciating moments after the passing of Matthew, the LGS Foundation became a place where I could serve and support other grieving families. It was this space and the action of giving back that has been instrumental to healing my broken heart. We cannot forget the beautiful lives that left an amazing impact on the world around us.
Would you pause for a moment and watch this brief video of our recent butterfly release to remember and celebrate lives that have been lost to LGS?”
On the Ninth Day of Giving – December 25, 2022
On the Tenth Day of Giving – December 27, 2022
On the Eleventh Day of Giving – December 29, 2022
“This GRANT has provided me with significant moments in the lab to consider how low-intensity ultrasound can modulate brain activity. We are using the mouse model developed by an earlier LGS Foundation grant recipient to explore ways to harness FUS technology for seizure control. FUS aims sound waves through the skull to a target area in the brain -without the need for brain surgery!
If this intervention succeeds, focused ultrasound could become a non-invasive substitute for deep brain stimulation in LGS. This option could also expand groundbreaking moments to more patients who have limited access to specialized centers and financial resources required for DBS.”
On the Twelfth Day of Giving – December 31, 2022
Life is not measured by time. It is measured by moments.
Because of you, we have been able to support so many incredible moments for families living with LGS this year!
Dear LGS Community,
Thank you for all the ways you have supported the LGS Foundation this year and those impacted by this horrible disease. As our 12 Days of Giving Stories have shown, because you give, we are changing the world – TOGETHER.
As we reach the end of the year, I want to say thank you for supporting our dreams for a better future.
LGS is Tough. So are we. And we are genuinely Standing Together, Stronger Together.
With gratitude and hope,
Tracy Dixon-Salazar, PhD
Executive Director, LGS Foundation
Life is not measured by time. It is measured by moments.
Thank you for all the ways you support and empower the LGS Foundation and those impacted by this horrible disease! Because you give, we are changing the world of LGS – TOGETHER.
Updated 08/21/24 (AM)