Latest news with #GRIDisorders
Yahoo
01-04-2025
- Health
- Yahoo
Meet our 2025 Remarkable Women winner: Lauren Williams
BATON ROUGE, La. (Louisiana First) — We're proud to announce the local Remarkable Women winner for this year's contest! Lauren Williams is a Baton Rouge woman who started a foundation with other families after losing her son to a rare disorder. Williams was shocked when she was surprised by family and friends holding a sign that read four special words: 'You're going to Hollywood.' 'I'm grateful for this opportunity to be on this kind of platform to get our legacy out and everything we're doing in Louisiana for rare diseases,' CureGRIN Foundation Director of Family & Donor Experience Lauren Williams said. Williams lost her only child, Carter, to a rare disorder called GRIN1. She used her pain for something greater when she started an organization with several other families. The organization is committed to improving the lives of people living with GRI Disorders. 'Well, it doesn't feel like work to me. I wake up in the mornings and want to do this. It's incredible,' Williams said. Although Carter's life can't be replaced, Williams said her heart is full knowing CureGRIN is touching many lives across the globe. 'He may not be here in body but in spirit, and he's forever loved by so many people,' Williams said. As our Remarkable Women winner, Williams got a check for $1,000 to continue research efforts for CureGRIN. 'We're so proud of everything that you've accomplished and the fact that you're going to represent all of southeast Louisiana as our Remarkable Woman,' Louisiana First News General Manager Tim Ingram said. Grateful for the award, she said she lives for the chance to connect with people and continue Carter's legacy. 'Thank you guys so much. It's an incredibly emotional moment for me to see how far we've come. But I want to dedicate it all to our kids who are continually fighting and our parents that fight every day and advocate for their kids,' said Williams. The date of the awards ceremony has an even more special meaning to Williams since it's on Carter's birthday. She believes it's all fate. Now she's left with tears of joy and a suitcase to pack. 'That means the world to me. I wish you would've known Carter. He's the catalyst for everything that I do,' Williams said. Williams leaves for the Hollywood trip on Sunday, April 13. Louisiana First News celebrated Women's History Month by sharing the stories of women who are doing amazing work in the community in the Capital Region. Williams, along with 124 other women from across the country, will travel to California for a few days of fun, networking, and a chance to become the national Remarkable Women winner. The map below shows this year's Remarkable Women winners throughout the U.S. Bridget Kaigler hopes to inspire next generation of accountants Sashika Baunchand's organization mentors young Louisiana girls Paulette Grey juggles family practice and community service Becky Prejean grants wishes for children with life-threatening illnesses Lawmakers weigh benefits of artificial intelligence in classrooms Trump announces deal with law firm tied to Doug Emhoff, Jan. 6 House panel House Republicans look to restrict federal judges Senators push back on President Trump's tariffs on Canada These 9 House Republicans rebelled against GOP leadership over parental proxy voting Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
Yahoo
12-03-2025
- Health
- Yahoo
Remarkable Women: Baton Rouge mom helps other parents after losing son to rare disorder
BATON ROUGE, La. (Louisiana First) — A Baton Rouge mom started a nonprofit organization with several other families after losing her only child to a rare disorder. 'Carter absolutely changed my life. He made me a better person, and I think he changed everybody's life that he came into contact with,' CureGRIN Foundation Director of Family & Donor Experience Lauren Williams said. Carter passed away in September 2023 from a rare neurodevelopmental disorder at 7 years old. Williams said her son will always be remembered for his laughter, glasses, and love for outer space. 'He was who he was. GRIN did make him who he was and I never would change that. But if I could have alleviated any of the pain and any of his struggles, I would have done it,' said Williams. Remarkable Women: Sashika Baunchand's organization mentors young Louisiana girls As a new mom, Williams said she immediately noticed something different in her premature newborn before leaving the hospital. Initially, she believed it was just anxiety. When it still didn't sit right with her, she spent hours each day doing research, working as late as 3 a.m. looking for answers. 'It was kind of like he would stare in space like he was in his own little world and no one else existed and so that started me on meeting with different pediatricians to figure out is it just a delay that he'll catch up with, or is it something more than that,' Williams said. After going through nine pediatricians, it turns out Carter was diagnosed with GRIN1, a form of a Glutamate Receptor Ionotropic (GRI) Disorder. Genetic sequencing led to the discovery that he had grown one when he was 1 and a half years old. Williams said connecting with other parents through social media who were experiencing similarities with their child brought relief, comfort, and validation. 'It's one thing to have a community of people who your child share all these symptoms and whatever, but it's another thing to have them have the exact same diagnosis and know, 'Okay, I found my people,' Williams said. Williams and five other groups of parents founded CureGRIN, an organization committed to improving the lives of people living with GRI Disorders. 'I decided it'd be a good idea to have a central hub or a way for people with this diagnosis to have a place to go for resources, knowing somebody is out there advocating for a cure and a treatment, knowing families won't feel so alone,' Williams said. Williams said it's unheard of to go from no research on GRIN1 in 2017 to three clinical trials in 2025. 'It took years as a mom waiting to come home to your child to run up to you. And it took years for him to be able to do that. And it was a moment that has stuck in my brain. And to watch these families be able to experience, 'Oh, my God, I thought my child would not be able to do anything to I can't believe this is happening,'' said Williams. Williams said Carter's passing pushed her towards her purpose to help other parents find answers through CureGRIN. 'It gets me out of bed in the morning, and that's what keeps me going. But seeing Carter, I have him. He's just a part of this house,' said Williams. Today, the CureGRIN Foundation helps over 300 families and has raised over $2 million to support parents and advance research efforts. Globally, there's over 1,000 GRI disorder diagnoses. 'Access to genetic testing is going to show everyone how unrare rare is,' Williams said. Remarkable Women: Baton Rouge mom helps other parents after losing son to rare disorder Missing woman survives 6 days trapped in wrecked car as drivers pass unaware Southern University to build $68M STEM complex, replacing old hall Ascension Parish Schools launch safety campaign ahead of prom season Lone Democrat to back House GOP spending bill explains decision Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
