Fragile X Syndrome & Associated Premutation Conditions Webinars | NFXF (original) (raw)

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Fragile X Syndrome & Associated Premutation Conditions Webinars

Fragile X Syndrome & Associated Premutation Conditions WebinarsDany Petraska2023-12-21T11:59:57-05:00

Fragile X Syndrome & Associated Premutation Conditions Webinars

Here we present all webinars, including our conference panels and presentations, organized from newest to oldest. Please note that these are also all available on our various Fragile X syndrome and premutation topic pages.

Anna De Sonia2025-01-03T14:46:33-05:00

NFXF Webinar Series: Gene Therapy & the FXS Community: A Review of Community Surveys

Anna De Sonia2025-01-03T14:46:33-05:00Jan 2, 2025|

In December 2024, the NFXF put on a webinar discussing gene therapy and the perspectives from those in the FX community. During this webinar, expert Dr. David Hampson laid the groundwork of understanding what gene therapy is, followed by three different groups - The Patrick Wild Centre, Mt. Siani Hospital, and the NFXF - presenting on their community surveys, which all aimed to understand the perspectives on gene therapy from the Fragile X community.

Missy Zolecki2024-11-11T15:57:46-05:00

Females with Fragile X Syndrome — Webinar

Missy Zolecki2024-11-11T15:57:46-05:00Nov 11, 2024|

Barb Haas-Givler, MEd, BCBA, Cora Taylor, PhD, Nicole Tartaglia, MD, Tracy Jordan, PhD, and Vicki Wilkins, MD joined us for a one-hour Q & A discussing Females with Fragile X Syndrome.

Missy Zolecki2024-01-25T15:03:03-05:00

Introductory Discussion on Estate Planning — Webinar

Missy Zolecki2024-01-25T15:03:03-05:00Jan 25, 2024|

We hosted an introductory discussion on bequests, wills, trusts, life insurance, and IRA transfers. The panel provided insight on navigating the complexities of wealth transfer, ensuring your legacy is preserved and your loved ones are well cared for.

Missy Zolecki2023-11-02T12:20:32-04:00

Employment Strategies and Successes — Webinar

Missy Zolecki2023-11-02T12:20:32-04:00Nov 2, 2023|

In celebration of National Disability Employment Awareness Month, we were joined by a dynamic panel that shared strategies and their individual employment successes! Meaningful employment is important to parents and self-advocates!

Kristin Bogart2023-12-14T11:17:44-05:00

2023 Industry Updates — Webinar

Kristin Bogart2023-12-14T11:17:44-05:00Sep 27, 2023|

The NFXF hosted a Fragile X research updates webinar with three of our industry partners working on treatments for Fragile X syndrome. Each shared the most up-to-date information on their research project(s) in a way that is understood by those who aren’t steeped in drug research day in and day out. A short Q&A followed each presentation.

Missy Zolecki2023-10-26T09:43:35-04:00

Reproductive Health — Webinar

Missy Zolecki2023-10-26T09:43:35-04:00Sep 6, 2023|

Drs. Heather Hipp and Victoria Wilkins joined us for an informative webinar on the topic of Reproductive health. This is a broad topic, covering the physical and emotional components of areas like puberty, sexuality, reproductive options, and family planning.

Missy Zolecki2023-12-14T11🔞44-05:00

Education Strategies for Success — Webinar

Missy Zolecki2023-12-14T11🔞44-05:00Aug 21, 2023|

Educational strategies are not just helpful for school-aged children! The one-hour Q&A panel discussion, moderated by Hilary Rosselot, includes panelists with expertise and suggestions to support individuals living with Fragile X throughout the lifespan!

Kristin Bogart2023-12-20T10:48:10-05:00

Fragile X Medications — Panel

Kristin Bogart2023-12-20T10:48:10-05:00Jul 17, 2022|

Hilary Rosselot moderates this discussion on medications for Fragile X with an expert panel that includes Drs. Elizabeth Berry-Kravis, Craig A. Erickson, Randi J. Hagerman, Reymundo Lozano, and Nicole Tartaglia.

Kristina Udice2023-12-20T16:11:06-05:00

2022 Industry Updates — Presentation

Kristina Udice2023-12-20T16:11:06-05:00Jul 15, 2022|

It's time for our 2022 FXS industry insights. Moderated by Hilary Rosselot, explore research, insights, clinical trials, discussions, and more with presentations by Stela Filipovic-Sadic from Asurage, Stephen O’Quinn from Zynerba Pharmaceuticals, Chad Coberly from Tetra Therapeutics, and Wayne Chadwick from Healx.

Kristin Bogart2024-01-11T18:04:09-05:00

A Discussion and Q&A on the Fragile X Syndrome Research Landscape — Panel

Kristin Bogart2024-01-11T18:04:09-05:00Jul 15, 2022|

How you can get involved in Fragile X research, featuring Elizabeth Berry-Kravis, Craig A. Erickson, Randi J. Hagerman, David Hessl, Tracy King, Angel Wang, Jean Luan McColl, Laurie Bridges, Kara Frech, Emily Mack, Amie Milunovich, and Missy Zolecki, and moderated by Hilary Rosselot.

Marcia Braden2023-12-20T22:49:41-05:00

Females and Fragile X Syndrome — Webinar

Marcia Braden2023-12-20T22:49:41-05:00Jun 9, 2021|

Dr. Braden helps us understand the difference between males and females with Fragile X syndrome as well as strategies for common challenges for females that include executive functioning and relationships.

Brenda Finucane2023-12-20T22:59:42-05:00

The Genetics of Fragile X Disorders

Brenda Finucane2023-12-20T22:59:42-05:00Apr 28, 2021|

Many thanks to Brenda Finucane for this webinar to help each of us understand the genetics of Fragile X. Brenda is a professor and licensed genetic counselor at Geisinger’s Autism and Developmental Medicine Institute in Lewisburg, PA.

Marcia Braden2023-12-21T00:04:47-05:00

Female Power to Fight a Crisis — Presentation

Marcia Braden2023-12-21T00:04:47-05:00May 8, 2020|

Females living with Fragile X syndrome were asked to give advice to other females living with FXS on how to cope with this — or any future — crisis. Listen as Marcia talks through their advice and her own advice, built on decades of working with patients with Fragile X syndrome.

Rebecca Shaffer2024-02-29T14:29:10-05:00

My Child is Home… Now What?? Play Skills

Rebecca Shaffer2024-02-29T14:29:10-05:00Apr 7, 2020|

In this webinar, Rebecca Shaffer guides us through some pointers about how to build play skills while your children are at home, and some great resources for thinking through different play opportunities while they’re at home.

NFXF2024-10-22T10:21:13-04:00

Genetics 101: Fragile X Inheritance — Webinar

NFXF2024-10-22T10:21:13-04:00May 22, 2017|

Whether you’re a newly-diagnosed family in the fragile X community or have been living with the diagnosis for several years, please join us as we speak with Brenda Finucane (Geisinger, ADMI Associate Director & Professor) about the nuts and bolts of Fragile X inheritance.

NFXF2023-12-21T00:44:51-05:00

Fragile X Premutation With Dr. Randi Hagerman — Webinar

NFXF2023-12-21T00:44:51-05:00Feb 1, 2017|

Our very own founder, Dr. Randi Hagerman of the UC Davis MIND Institute, joins us to discuss issues in Fragile X premutation carriers. Needless to say, she is a major force in research for Fragile X and one of the biggest names in our field! Join us for a presentation and some time for Q&A!

Contributor2023-12-21T00:49:42-05:00

NFXF Webinar: Being Prepared for Adulthood

Contributor2023-12-21T00:49:42-05:00Dec 15, 2016|

Dr. Yankowitz discusses the adult transitions you want to start planning well before your child ages out of services. Dr. Yankowitz has more than 30 years experience working with families of individuals with developmental disabilities.

NFXF2015-11-20T14:01:36-05:00

Let's Talk FXS, Autism & Behavior with Tracy & Mouse

NFXF2015-11-20T14:01:36-05:00Nov 20, 2015|

Our favorite duo, Mouse & Tracy of Developmental FX, join us to discuss Fragile X, autism and behavior. As always, they provided insight and wonderful advice to our audience - and their presence is always a delight!

NFXF2015-08-04T14:04:47-04:00

Let's Talk Fragile X Premutation Carriers and Health

NFXF2015-08-04T14:04:47-04:00Aug 4, 2015|

Fragile X premutation carriers have long expressed concern over issues they might be facing because of having the premutation. Only in recent years has research been making headway into the reality of premutation carrier issues.

NFXF2014-01-22T14:58:07-05:00

Let's Talk Behavior and FXS

NFXF2014-01-22T14:58:07-05:00Jan 22, 2014|

Dr. Marcia Braden, licensed psychologist and noted Fragile X expert, leads our latest "Let's Talk" Webinar on Behavior. She begins with a presentation on "How Neurobiology Affects FXS Behavior", followed by a Q&A session from members who were part of the webinar.

NFXF2013-07-08T15:01:31-04:00

Let's Talk Medication For Fragile X Syndrome

NFXF2013-07-08T15:01:31-04:00Jul 8, 2013|

Given the great number of medications in the market that address specific issues with fragile X syndrome, the world of treatment can be tough for parents and other caregivers to navigate. One of the most frequent questions they ask is, "Which medication is best for my child?" The National Fragile X Foundation is pleased to address this topic in the first of its series of "Let's Talk" webinars. "Let's Talk Medication for Fragile X Syndrome" features Dr. Craig Erickson, a noted Fragile X expert and medical director of the Fragile X Clinic in Cincinnati, Ohio.

These are all of our available conference panels and presentations.

Kristin Bogart2023-12-20T10:48:10-05:00

Fragile X Medications — Panel

Kristin Bogart2023-12-20T10:48:10-05:00Jul 17, 2022|

Hilary Rosselot moderates this discussion on medications for Fragile X with an expert panel that includes Drs. Elizabeth Berry-Kravis, Craig A. Erickson, Randi J. Hagerman, Reymundo Lozano, and Nicole Tartaglia.

Kristina Udice2023-12-20T16:11:06-05:00

2022 Industry Updates — Presentation

Kristina Udice2023-12-20T16:11:06-05:00Jul 15, 2022|

It's time for our 2022 FXS industry insights. Moderated by Hilary Rosselot, explore research, insights, clinical trials, discussions, and more with presentations by Stela Filipovic-Sadic from Asurage, Stephen O’Quinn from Zynerba Pharmaceuticals, Chad Coberly from Tetra Therapeutics, and Wayne Chadwick from Healx.

Kristin Bogart2024-01-11T18:04:09-05:00

A Discussion and Q&A on the Fragile X Syndrome Research Landscape — Panel

Kristin Bogart2024-01-11T18:04:09-05:00Jul 15, 2022|

How you can get involved in Fragile X research, featuring Elizabeth Berry-Kravis, Craig A. Erickson, Randi J. Hagerman, David Hessl, Tracy King, Angel Wang, Jean Luan McColl, Laurie Bridges, Kara Frech, Emily Mack, Amie Milunovich, and Missy Zolecki, and moderated by Hilary Rosselot.

Marcia Braden2023-12-21T00:04:47-05:00

Female Power to Fight a Crisis — Presentation

Marcia Braden2023-12-21T00:04:47-05:00May 8, 2020|

Females living with Fragile X syndrome were asked to give advice to other females living with FXS on how to cope with this — or any future — crisis. Listen as Marcia talks through their advice and her own advice, built on decades of working with patients with Fragile X syndrome.

NFXF regularly schedules webinars for the Fragile X community. In addition, we share presentations and panel recordings from our biennial NFXF International Fragile X Conferences. If there are topics you’d like to see more resources for, we’d love to hear from you.

Please note that these are also all available on our various Fragile X syndrome and premutation topic pages.

All Webinars: All recordings from our ongoing webinars series’ and NFXF International Fragile X Conference panels and presentations.

Conference Sessions: NFXF International Fragile X Conference panels and presentations only.

Here we present all webinars, including our conference panels and presentations, organized from newest to oldest. Please note that these are also all available on our various Fragile X syndrome and premutation topic pages.

Anna De Sonia2025-01-03T14:46:33-05:00

NFXF Webinar Series: Gene Therapy & the FXS Community: A Review of Community Surveys

Anna De Sonia2025-01-03T14:46:33-05:00Jan 2, 2025|

In December 2024, the NFXF put on a webinar discussing gene therapy and the perspectives from those in the FX community. During this webinar, expert Dr. David Hampson laid the groundwork of understanding what gene therapy is, followed by three different groups - The Patrick Wild Centre, Mt. Siani Hospital, and the NFXF - presenting on their community surveys, which all aimed to understand the perspectives on gene therapy from the Fragile X community.

Missy Zolecki2024-11-11T15:57:46-05:00

Females with Fragile X Syndrome — Webinar

Missy Zolecki2024-11-11T15:57:46-05:00Nov 11, 2024|

Barb Haas-Givler, MEd, BCBA, Cora Taylor, PhD, Nicole Tartaglia, MD, Tracy Jordan, PhD, and Vicki Wilkins, MD joined us for a one-hour Q & A discussing Females with Fragile X Syndrome.

Missy Zolecki2024-01-25T15:03:03-05:00

Introductory Discussion on Estate Planning — Webinar

Missy Zolecki2024-01-25T15:03:03-05:00Jan 25, 2024|

We hosted an introductory discussion on bequests, wills, trusts, life insurance, and IRA transfers. The panel provided insight on navigating the complexities of wealth transfer, ensuring your legacy is preserved and your loved ones are well cared for.

Missy Zolecki2023-11-02T12:20:32-04:00

Employment Strategies and Successes — Webinar

Missy Zolecki2023-11-02T12:20:32-04:00Nov 2, 2023|

In celebration of National Disability Employment Awareness Month, we were joined by a dynamic panel that shared strategies and their individual employment successes! Meaningful employment is important to parents and self-advocates!

Kristin Bogart2023-12-14T11:17:44-05:00

2023 Industry Updates — Webinar

Kristin Bogart2023-12-14T11:17:44-05:00Sep 27, 2023|

The NFXF hosted a Fragile X research updates webinar with three of our industry partners working on treatments for Fragile X syndrome. Each shared the most up-to-date information on their research project(s) in a way that is understood by those who aren’t steeped in drug research day in and day out. A short Q&A followed each presentation.

Missy Zolecki2023-10-26T09:43:35-04:00

Reproductive Health — Webinar

Missy Zolecki2023-10-26T09:43:35-04:00Sep 6, 2023|

Drs. Heather Hipp and Victoria Wilkins joined us for an informative webinar on the topic of Reproductive health. This is a broad topic, covering the physical and emotional components of areas like puberty, sexuality, reproductive options, and family planning.

Missy Zolecki2023-12-14T11🔞44-05:00

Education Strategies for Success — Webinar

Missy Zolecki2023-12-14T11🔞44-05:00Aug 21, 2023|

Educational strategies are not just helpful for school-aged children! The one-hour Q&A panel discussion, moderated by Hilary Rosselot, includes panelists with expertise and suggestions to support individuals living with Fragile X throughout the lifespan!

Kristin Bogart2023-12-20T10:48:10-05:00

Fragile X Medications — Panel

Kristin Bogart2023-12-20T10:48:10-05:00Jul 17, 2022|

Hilary Rosselot moderates this discussion on medications for Fragile X with an expert panel that includes Drs. Elizabeth Berry-Kravis, Craig A. Erickson, Randi J. Hagerman, Reymundo Lozano, and Nicole Tartaglia.

Kristina Udice2023-12-20T16:11:06-05:00

2022 Industry Updates — Presentation

Kristina Udice2023-12-20T16:11:06-05:00Jul 15, 2022|

It's time for our 2022 FXS industry insights. Moderated by Hilary Rosselot, explore research, insights, clinical trials, discussions, and more with presentations by Stela Filipovic-Sadic from Asurage, Stephen O’Quinn from Zynerba Pharmaceuticals, Chad Coberly from Tetra Therapeutics, and Wayne Chadwick from Healx.

Kristin Bogart2024-01-11T18:04:09-05:00

A Discussion and Q&A on the Fragile X Syndrome Research Landscape — Panel

Kristin Bogart2024-01-11T18:04:09-05:00Jul 15, 2022|

How you can get involved in Fragile X research, featuring Elizabeth Berry-Kravis, Craig A. Erickson, Randi J. Hagerman, David Hessl, Tracy King, Angel Wang, Jean Luan McColl, Laurie Bridges, Kara Frech, Emily Mack, Amie Milunovich, and Missy Zolecki, and moderated by Hilary Rosselot.

Marcia Braden2023-12-20T22:49:41-05:00

Females and Fragile X Syndrome — Webinar

Marcia Braden2023-12-20T22:49:41-05:00Jun 9, 2021|

Dr. Braden helps us understand the difference between males and females with Fragile X syndrome as well as strategies for common challenges for females that include executive functioning and relationships.

Brenda Finucane2023-12-20T22:59:42-05:00

The Genetics of Fragile X Disorders

Brenda Finucane2023-12-20T22:59:42-05:00Apr 28, 2021|

Many thanks to Brenda Finucane for this webinar to help each of us understand the genetics of Fragile X. Brenda is a professor and licensed genetic counselor at Geisinger’s Autism and Developmental Medicine Institute in Lewisburg, PA.

Marcia Braden2023-12-21T00:04:47-05:00

Female Power to Fight a Crisis — Presentation

Marcia Braden2023-12-21T00:04:47-05:00May 8, 2020|

Females living with Fragile X syndrome were asked to give advice to other females living with FXS on how to cope with this — or any future — crisis. Listen as Marcia talks through their advice and her own advice, built on decades of working with patients with Fragile X syndrome.

Rebecca Shaffer2024-02-29T14:29:10-05:00

My Child is Home… Now What?? Play Skills

Rebecca Shaffer2024-02-29T14:29:10-05:00Apr 7, 2020|

In this webinar, Rebecca Shaffer guides us through some pointers about how to build play skills while your children are at home, and some great resources for thinking through different play opportunities while they’re at home.

NFXF2024-10-22T10:21:13-04:00

Genetics 101: Fragile X Inheritance — Webinar

NFXF2024-10-22T10:21:13-04:00May 22, 2017|

Whether you’re a newly-diagnosed family in the fragile X community or have been living with the diagnosis for several years, please join us as we speak with Brenda Finucane (Geisinger, ADMI Associate Director & Professor) about the nuts and bolts of Fragile X inheritance.

NFXF2023-12-21T00:44:51-05:00

Fragile X Premutation With Dr. Randi Hagerman — Webinar

NFXF2023-12-21T00:44:51-05:00Feb 1, 2017|

Our very own founder, Dr. Randi Hagerman of the UC Davis MIND Institute, joins us to discuss issues in Fragile X premutation carriers. Needless to say, she is a major force in research for Fragile X and one of the biggest names in our field! Join us for a presentation and some time for Q&A!

Contributor2023-12-21T00:49:42-05:00

NFXF Webinar: Being Prepared for Adulthood

Contributor2023-12-21T00:49:42-05:00Dec 15, 2016|

Dr. Yankowitz discusses the adult transitions you want to start planning well before your child ages out of services. Dr. Yankowitz has more than 30 years experience working with families of individuals with developmental disabilities.

NFXF2015-11-20T14:01:36-05:00

Let's Talk FXS, Autism & Behavior with Tracy & Mouse

NFXF2015-11-20T14:01:36-05:00Nov 20, 2015|

Our favorite duo, Mouse & Tracy of Developmental FX, join us to discuss Fragile X, autism and behavior. As always, they provided insight and wonderful advice to our audience - and their presence is always a delight!

NFXF2015-08-04T14:04:47-04:00

Let's Talk Fragile X Premutation Carriers and Health

NFXF2015-08-04T14:04:47-04:00Aug 4, 2015|

Fragile X premutation carriers have long expressed concern over issues they might be facing because of having the premutation. Only in recent years has research been making headway into the reality of premutation carrier issues.

NFXF2014-01-22T14:58:07-05:00

Let's Talk Behavior and FXS

NFXF2014-01-22T14:58:07-05:00Jan 22, 2014|

Dr. Marcia Braden, licensed psychologist and noted Fragile X expert, leads our latest "Let's Talk" Webinar on Behavior. She begins with a presentation on "How Neurobiology Affects FXS Behavior", followed by a Q&A session from members who were part of the webinar.

NFXF2013-07-08T15:01:31-04:00

Let's Talk Medication For Fragile X Syndrome

NFXF2013-07-08T15:01:31-04:00Jul 8, 2013|

Given the great number of medications in the market that address specific issues with fragile X syndrome, the world of treatment can be tough for parents and other caregivers to navigate. One of the most frequent questions they ask is, "Which medication is best for my child?" The National Fragile X Foundation is pleased to address this topic in the first of its series of "Let's Talk" webinars. "Let's Talk Medication for Fragile X Syndrome" features Dr. Craig Erickson, a noted Fragile X expert and medical director of the Fragile X Clinic in Cincinnati, Ohio.

These are all of our available conference panels and presentations.

Kristin Bogart2023-12-20T10:48:10-05:00

Fragile X Medications — Panel

Kristin Bogart2023-12-20T10:48:10-05:00Jul 17, 2022|

Hilary Rosselot moderates this discussion on medications for Fragile X with an expert panel that includes Drs. Elizabeth Berry-Kravis, Craig A. Erickson, Randi J. Hagerman, Reymundo Lozano, and Nicole Tartaglia.

Kristina Udice2023-12-20T16:11:06-05:00

2022 Industry Updates — Presentation

Kristina Udice2023-12-20T16:11:06-05:00Jul 15, 2022|

It's time for our 2022 FXS industry insights. Moderated by Hilary Rosselot, explore research, insights, clinical trials, discussions, and more with presentations by Stela Filipovic-Sadic from Asurage, Stephen O’Quinn from Zynerba Pharmaceuticals, Chad Coberly from Tetra Therapeutics, and Wayne Chadwick from Healx.

Kristin Bogart2024-01-11T18:04:09-05:00

A Discussion and Q&A on the Fragile X Syndrome Research Landscape — Panel

Kristin Bogart2024-01-11T18:04:09-05:00Jul 15, 2022|

How you can get involved in Fragile X research, featuring Elizabeth Berry-Kravis, Craig A. Erickson, Randi J. Hagerman, David Hessl, Tracy King, Angel Wang, Jean Luan McColl, Laurie Bridges, Kara Frech, Emily Mack, Amie Milunovich, and Missy Zolecki, and moderated by Hilary Rosselot.

Marcia Braden2023-12-21T00:04:47-05:00

Female Power to Fight a Crisis — Presentation

Marcia Braden2023-12-21T00:04:47-05:00May 8, 2020|

Females living with Fragile X syndrome were asked to give advice to other females living with FXS on how to cope with this — or any future — crisis. Listen as Marcia talks through their advice and her own advice, built on decades of working with patients with Fragile X syndrome.

NFXF regularly schedules webinars for the Fragile X community. In addition, we share presentations and panel recordings from our biennial NFXF International Fragile X Conferences. If there are topics you’d like to see more resources for, we’d love to hear from you.

Please note that these are also all available on our various Fragile X syndrome and premutation topic pages.

All Webinars: All recordings from our ongoing webinars series’ and NFXF International Fragile X Conference panels and presentations.

Conference Sessions: NFXF International Fragile X Conference panels and presentations only.