What’s it like to participate in an epilepsy drug trial? How do you find the right trial? What should you know before participating? And what can you do if the epilepsy is so rare that there are no trials? Clinical trials are the only way to bring new epilepsy drugs to the public, and those who participate are trailblazers, helping researchers lay the foundation for new therapies, improved medications, and better lives for their fellow epilepsy patients.
In the finale of our 4-part series exploring the drug development process, we look at clinical trials through the eyes of a participant. We speak with Kim Nye, mother of two children with epilepsy and founder of the Tess Research Foundation, about her experiences enrolling her children in epilepsy clinical trials. Kim provides the patient perspective on finding clinical trials, determining if a trial is right for you and your child, and understanding what will be expected as a participant throughout the trial.
Kim also shares advice for those who may not be able to find trials that focus on rare diseases. If you are interested in participating in clinical trials, this episode of Seizing Life will provide you with insights and advice from someone who’s been through multiple trials and continues to participate in order to push epilepsy research forward.
https://www.tessresearch.org/wp-content/uploads/2020/12/2020-12-17-6.png1169783primaryhttps://tessresearch.org/wp-content/uploads/2015/11/tess-logo_horz_02-01-01-300x95.pngprimary2020-12-17 20:46:132020-12-18 02:26:56TESS Research Foundation Updates 2020
https://www.tessresearch.org/wp-content/uploads/2020/09/GMT20200822-154809_Family-Pla_1920x1080.00_00_59_04.Still001.png10801920primaryhttps://tessresearch.org/wp-content/uploads/2015/11/tess-logo_horz_02-01-01-300x95.pngprimary2020-09-01 18:39:252020-10-08 18:42:29Webinar Recording Link & International Call this Wednesday!
https://www.tessresearch.org/wp-content/uploads/2020/10/Alleigh-Boyd-TESS-Webinar-Header.png6751200primaryhttps://tessresearch.org/wp-content/uploads/2015/11/tess-logo_horz_02-01-01-300x95.pngprimary2020-08-10 18:34:372020-10-08 18:38:06Ask the Expert Webinar: Family Planning After an SLC13A5 Diagnosis 👶
https://www.tessresearch.org/wp-content/uploads/2020/10/Kim-Zoom-Elli-Webinar.00_01_14_02.Still002.png21603840primaryhttps://tessresearch.org/wp-content/uploads/2015/11/tess-logo_horz_02-01-01-300x95.pngprimary2020-08-07 18:27:192020-10-08 18:29:57Link to Webinar Recording: Introduction to SLC13A5 Genetics
https://www.tessresearch.org/wp-content/uploads/2020/03/Screenshot-of-Research-Roundtable-2020.jpg17301745primaryhttps://tessresearch.org/wp-content/uploads/2015/11/tess-logo_horz_02-01-01-300x95.pngprimary2020-02-20 20:52:502020-10-07 21:02:44Registration, Travel Grants and Lightning Round Presentations for our SLC13A5 Research Roundtable due TODAY!
https://www.tessresearch.org/wp-content/uploads/2020/02/AKP_NyeFamily_Jan2020-112-1.jpg638850primaryhttps://tessresearch.org/wp-content/uploads/2015/11/tess-logo_horz_02-01-01-300x95.pngprimary2020-02-07 20:48:252020-10-07 20:50:25Menlo Park-based foundation receives key funding to support goal to cure genetic form of epilepsy
https://www.tessresearch.org/wp-content/uploads/2020/02/Logo_ClimateOnlineRWC_2017-12-01-1.png3231802primaryhttps://tessresearch.org/wp-content/uploads/2015/11/tess-logo_horz_02-01-01-300x95.pngprimary2020-02-03 20:46:232020-10-07 20:47:58Chan Zuckerberg Initiative aids Menlo Park couple’s quest to cure rare genetic epilepsy
https://www.tessresearch.org/wp-content/uploads/2019/06/Conference-2018-Group-Photo-Adriana-Klas-Photography-18-2.jpg26193928primaryhttps://tessresearch.org/wp-content/uploads/2015/11/tess-logo_horz_02-01-01-300x95.pngprimary2020-01-20 20:44:052020-10-07 20:45:59Register for this year's SLC13A5 Research Roundtable and Apply for Travel Grants and Lightning Round Presentations!
https://www.tessresearch.org/wp-content/uploads/2020/02/Jackson-and-Kaiden.jpg960960primaryhttps://tessresearch.org/wp-content/uploads/2015/11/tess-logo_horz_02-01-01-300x95.pngprimary2019-12-13 20:32:482020-10-07 20:34:51Double your impact
https://www.tessresearch.org/wp-content/uploads/2020/02/Save-the-Date-SLC13A5-Research-Roundtable.png529529primaryhttps://tessresearch.org/wp-content/uploads/2015/11/tess-logo_horz_02-01-01-300x95.pngprimary2019-10-08 20:26:552020-10-07 20:28:55Save the Date—SLC13A5 Research Roundtable
https://www.tessresearch.org/wp-content/uploads/2020/02/Webinar-Slide.jpg8251315primaryhttps://tessresearch.org/wp-content/uploads/2015/11/tess-logo_horz_02-01-01-300x95.pngprimary2019-10-07 20:23:422020-10-07 20:25:13TESS Research Family Updates Oct 2019
https://www.tessresearch.org/wp-content/uploads/2020/02/Meredith-e1580778902576.jpg824824primaryhttps://tessresearch.org/wp-content/uploads/2015/11/tess-logo_horz_02-01-01-300x95.pngprimary2019-09-09 20:18:572020-10-07 20:20:31TESS Research Family Updates Sept 2019
https://www.tessresearch.org/wp-content/uploads/2019/06/TESS-Researchers-2019-e1561761975143.png10332325primaryhttps://tessresearch.org/wp-content/uploads/2015/11/tess-logo_horz_02-01-01-300x95.pngprimary2019-06-28 20:15:062020-10-07 20:18:25Meet our current TESS Grant Recipients!
https://www.tessresearch.org/wp-content/uploads/2018/12/8d5c0c9c-648c-4384-972d-a2e9f7ecb75c.jpeg8001200primaryhttps://tessresearch.org/wp-content/uploads/2015/11/tess-logo_horz_02-01-01-300x95.pngprimary2018-12-30 20:12:152020-10-07 20:13:52There's Still Time to Double Your Impact: The New Horizon for Research at TESS, Gene Therapy, & Matching Donations
https://www.tessresearch.org/wp-content/uploads/2018/12/Screen-Shot-2018-11-29-at-3.02.25-PM.png7701280primaryhttps://tessresearch.org/wp-content/uploads/2015/11/tess-logo_horz_02-01-01-300x95.pngprimary2018-12-15 20:06:362020-10-07 20:11:10Medical Momentum: The TESS Research Foundation helps families worldwide fight a rare disorder
https://www.tessresearch.org/wp-content/uploads/2020/10/Adriana-Klas-Photography-10-2.jpg26403960primaryhttps://tessresearch.org/wp-content/uploads/2015/11/tess-logo_horz_02-01-01-300x95.pngprimary2018-11-26 18:47:132020-10-08 19:01:02⏰ Research Proposals Due December 1 ⏰
https://www.tessresearch.org/wp-content/uploads/2019/06/Conference-2018-Group-Photo-Adriana-Klas-Photography-18-2.jpg26193928primaryhttps://tessresearch.org/wp-content/uploads/2015/11/tess-logo_horz_02-01-01-300x95.pngprimary2018-11-06 19:01:422020-10-08 19:05:53Read all about our Research Funding Opportunity, Conference and More!
https://www.tessresearch.org/wp-content/uploads/2020/10/OneDayOneDream-Winner-Video.png13472400primaryhttps://tessresearch.org/wp-content/uploads/2015/11/tess-logo_horz_02-01-01-300x95.pngprimary2018-04-18 20:38:022020-10-07 20:42:44Meet the winners of #OneDayOneDream with NBA player Pau Gasol
https://www.tessresearch.org/wp-content/uploads/2018/07/8755476b-6441-470c-9c4e-94f2af965ab6.jpg720720primaryhttps://tessresearch.org/wp-content/uploads/2015/11/tess-logo_horz_02-01-01-300x95.pngprimary2018-03-15 20:01:292020-10-07 20:05:29Last Chance for Pau Gasol #OneDayOneDream Sweepstakes & TESS in the News
https://www.tessresearch.org/wp-content/uploads/2018/07/60092b44-ecf9-40ec-8cf5-223bcd194811.jpg786783primaryhttps://tessresearch.org/wp-content/uploads/2015/11/tess-logo_horz_02-01-01-300x95.pngprimary2018-03-09 18:15:592020-10-06 18:18:11Partnership with NBA player Pau Gasol for #OneDayOneDream Sweepstakes
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Epilepsy Drug Development: Clinical Trials – A Patient’s Perspective
/0 Comments/in News /by primaryWhat’s it like to participate in an epilepsy drug trial? How do you find the right trial? What should you know before participating? And what can you do if the epilepsy is so rare that there are no trials? Clinical trials are the only way to bring new epilepsy drugs to the public, and those who participate are trailblazers, helping researchers lay the foundation for new therapies, improved medications, and better lives for their fellow epilepsy patients.
In the finale of our 4-part series exploring the drug development process, we look at clinical trials through the eyes of a participant. We speak with Kim Nye, mother of two children with epilepsy and founder of the Tess Research Foundation, about her experiences enrolling her children in epilepsy clinical trials. Kim provides the patient perspective on finding clinical trials, determining if a trial is right for you and your child, and understanding what will be expected as a participant throughout the trial.
Kim also shares advice for those who may not be able to find trials that focus on rare diseases. If you are interested in participating in clinical trials, this episode of Seizing Life will provide you with insights and advice from someone who’s been through multiple trials and continues to participate in order to push epilepsy research forward.
Watch the Video or Listen to it as a Podcast
TESS Research Foundation Updates 2020
/0 Comments/in News /by primaryWebinar Recording Link & International Call this Wednesday!
/0 Comments/in News /by primaryTESS Research Foundation Newsletter
Read this Issue
Ask the Expert Webinar: Family Planning After an SLC13A5 Diagnosis 👶
/0 Comments/in News /by primaryTESS Research Foundation Webinar
Read this Issue
Link to Webinar Recording: Introduction to SLC13A5 Genetics
/0 Comments/in News /by primaryTESS Research Foundation Newsletter
Read this Issue
Introduction to SLC13A5 Genetics Webinar–this SATURDAY!
/0 Comments/in News /by primaryTESS Research Foundation Newsletter
Read this Issue
Registration, Travel Grants and Lightning Round Presentations for our SLC13A5 Research Roundtable due TODAY!
/0 Comments/in News /by primaryTESS Research Foundation Newsletter
Read this Issue
Menlo Park-based foundation receives key funding to support goal to cure genetic form of epilepsy
/0 Comments/in News /by primaryInMenlo
Read the Full Story
Chan Zuckerberg Initiative aids Menlo Park couple’s quest to cure rare genetic epilepsy
/0 Comments/in News /by primaryClimate Online
Read the Full Story
Register for this year’s SLC13A5 Research Roundtable and Apply for Travel Grants and Lightning Round Presentations!
/0 Comments/in News /by primaryTESS Research Foundation Newsletter
Read this Issue
Double your impact
/0 Comments/in News /by primaryTESS Research Foundation Newsletter
Read this Issue
November is Epilepsy Awareness Month!
/0 Comments/in News /by primaryTESS Research Foundation Newsletter
Read this Issue
Save the Date—SLC13A5 Research Roundtable
/0 Comments/in News /by primaryTESS Research Foundation Newsletter
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TESS Research Family Updates Oct 2019
/0 Comments/in News /by primaryTESS Research Foundation Newsletter
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Reminder: SLC13A5 Webinar Event This Saturday
/0 Comments/in News /by primaryTESS Research Foundation Newsletter
Read this Issue
TESS Research Family Updates Sept 2019
/0 Comments/in News /by primaryTESS Research Foundation Newsletter
Read this Issue
Meet our current TESS Grant Recipients!
/0 Comments/in News /by primaryTESS Research Foundation Newsletter
Read this Issue
There’s Still Time to Double Your Impact: The New Horizon for Research at TESS, Gene Therapy, & Matching Donations
/0 Comments/in News /by primaryTESS Research Foundation Newsletter
Read this Issue
Medical Momentum: The TESS Research Foundation helps families worldwide fight a rare disorder
/0 Comments/in News /by primarySilicon Valley
Read this Issue
⏰ Research Proposals Due December 1 ⏰
/0 Comments/in News /by primaryTESS Research Foundation Newsletter
Read this Issue
Read all about our Research Funding Opportunity, Conference and More!
/0 Comments/in News /by primaryTESS Research Foundation Newsletter
Read this Issue
Meet the winners of #OneDayOneDream with NBA player Pau Gasol
/0 Comments/in News /by primaryLast Chance for Pau Gasol #OneDayOneDream Sweepstakes & TESS in the News
/0 Comments/in News /by primaryTESS Research Foundation Newsletter
Read this Issue
Partnership with NBA player Pau Gasol for #OneDayOneDream Sweepstakes
/0 Comments/in News /by primaryTESS Research Foundation Newsletter
Read this Issue
Tessa’s mystery condition gets a diagnosis
/0 Comments/in News /by primaryStanford Children’s Health
Read the Full Story