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Sixth Annual Lennox-Gastaut Syndrome (LGS) Walk Scheduled for June 5 is Raising Critical Funds for Research

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SAN DIEGO, May 31, 2021 /PRNewswire/ On June 5, the Lennox-Gastaut Syndrome (LGS) Foundation will join families and friends from around the world as they Step Towards a Cure, Together. On this day, hundreds of individuals and family members impacted by LGS will come together, in-person and online, to increase public awareness of this rare disease and to share their stories of hope for the future.
The 6th Annual LGS Foundation Walk n Wheel ® is hosted by the LGS Foundation and will celebrate the ability of those with LGS, who suffer many challenges due to frequent, uncontrolled seizures, to walk, ride, and wheel in their wheelchairs all to raise funds for research into disease-modifying therapies and cures for LGS. ....

Tracy Dixon Salazar , Executive Director , Lgs Foundation , சுவடு டிக்சன் சலாசர் , நிர்வாகி இயக்குனர் ,

Two Families Grapple with Rare Disease Diagnosis, Finding Treatments

By Dana Talesnik
Isabella and Julia Flysjo, age 4, are part of a first-in-human gene therapy trial at the Clinical Center for their rare disease.
Photo: Niclas Flysjo
It’s agonizing for parents to watch their children suffer and not know how to help them. When parents learn their child has a rare disease, consumed with grief and fear, they try to navigate the confusing medical lingo for diseases that have limited resources and few, if any, effective treatments.
Two families were among those who shared their rare disease journeys during NIH’s Rare Disease Day virtual event on Mar. 1. In both cases, their babies were born seemingly healthy. Then, around age 2, worrisome symptoms appeared that led these families to seek a medical evaluation. ....

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PRA's Center for Rare Diseases Launches Toolkit to Identify and Mitigate Risks to Rare Disease Clinical Programs

PRA's Center for Rare Diseases Launches Toolkit to Identify and Mitigate Risks to Rare Disease Clinical Programs
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PRA's Center for Rare Diseases Launches Toolkit to Identify and Mitigate Risks to Rare Disease Clinical Programs – Africa News Wire

PRA's Center for Rare Diseases Launches Toolkit to Identify and Mitigate Risks to Rare Disease Clinical Programs – Africa News Wire
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Seizure Action Plan Awareness Week Scheduled for February 8-14

Tuberous Sclerosis Alliance. The campaign is underwritten by presenting sponsor Neurelis, Inc. with generous supporting funding from UCB, Inc.
SAP Week will highlight the need for people with epilepsy to have a conversation with their healthcare providers, especially if they are in a key subgroup who would benefit from a seizure action plan like those who have intractable epilepsy syndromes, who are at high risk for seizure clusters, status epilepticus or have frequent nocturnal generalized tonic-clonic seizures, said Dr. Tracy Dixon-Salazar, LGS Foundation Executive Director.
SAP Awareness Week features a social media campaign and new website designed to highlight the need for people with epilepsy, their caregivers and healthcare providers to develop detailed plans, especially should an emergency occur. The social media campaign incorporates the hashtag #SAPAW2021 and urges people to learn more at SeizureActionPlans.org. ....

United States , Tracy Dixon Salazar , Mike Davis , Kari Luther Rosbeck , Craig Chambliss , Mary Anne Meskis , Jaye Isham , Centers For Disease , Dravet Syndrome Foundation , Ucb Inc , Seizure Action Plan Coalition , Communications Strategy , Tuberous Sclerosis Alliance , Neurelis Inc , Foundation Executive Director , Seizure Action Plan , Awareness Week , Syndrome Foundation , Gastaut Syndrome , Disease Control , Executive Director , Dravet Syndrome , Chief Executive Officer , Seizure Action Plan Awareness Week , Tuberous Sclerosis , Lennox Gastaut Syndrome ,