Канал: ASXL Rare Research Endowment Foundation

2024 ASXL Family Conference - Attendee orientation

2024 ASXL Family Conference - Attendee orientation

Caregiver well-being: Roundtable discussion

Caregiver well-being: Roundtable discussion

About the 2024 ASXL Family Conference scholarship program

About the 2024 ASXL Family Conference scholarship program

Funding announcement: $50,000 investment in ASXL Registry and Biobank

Funding announcement: $50,000 investment in ASXL Registry and Biobank

2023: An unprecedented year of progress in the ASXL community

2023: An unprecedented year of progress in the ASXL community

Funding announcement: $5,000 pilot grant to support ASXL3 treatments

Funding announcement: $5,000 pilot grant to support ASXL3 treatments

Funding announcement: $60,000 investment in ASXL antibodies

Funding announcement: $60,000 investment in ASXL antibodies

Fireside chat: Updates from the ARRE Foundation with Laura Badmaev and Amanda Johnson

Fireside chat: Updates from the ARRE Foundation with Laura Badmaev and Amanda Johnson

Welcome to the ASXL-related disorder community

Welcome to the ASXL-related disorder community

Sharing the results of the ASXL Puberty Survey

Sharing the results of the ASXL Puberty Survey

GivingTuesday information session and tutorial

GivingTuesday information session and tutorial

How to: Create a Facebook Fundraiser for GivingTuesday

How to: Create a Facebook Fundraiser for GivingTuesday

How to: Create a personal fundraising page for GivingTuesday

How to: Create a personal fundraising page for GivingTuesday

Kidney abnormalities in genetic conditions with Dr. Michael Rauchman

Kidney abnormalities in genetic conditions with Dr. Michael Rauchman

ASXL3/Bainbridge-Ropers Syndrome family updates with Dr. Meena Balasubramanian

ASXL3/Bainbridge-Ropers Syndrome family updates with Dr. Meena Balasubramanian

Urinary incontinence: From toilet training to medical intervention

Urinary incontinence: From toilet training to medical intervention

Communication: tools, methods, and strategies for all abilities

Communication: tools, methods, and strategies for all abilities

Brain and body in motion: Why movement matters in neurogenetic and neurodevelopmental conditions

Brain and body in motion: Why movement matters in neurogenetic and neurodevelopmental conditions

Sensory sidebar: Integrating sensory supports

Sensory sidebar: Integrating sensory supports

Closing session – Pitt Hopkins Research Foundation

Closing session – Pitt Hopkins Research Foundation

Opening Session

Opening Session

Shashi-Pena Syndrome family updates with Dr. Vandana Shashi and Dr. Loren Peña

Shashi-Pena Syndrome family updates with Dr. Vandana Shashi and Dr. Loren Peña

Behavioral phenotyping in rare neurogenetic disorders: Preparing for clinical trials in ASXL

Behavioral phenotyping in rare neurogenetic disorders: Preparing for clinical trials in ASXL

A Day in the Life with Bohring-Opitz Syndrome (social share)

A Day in the Life with Bohring-Opitz Syndrome (social share)

Finding answers through research

Finding answers through research

What is Bainbridge-Ropers Syndrome?

What is Bainbridge-Ropers Syndrome?

GivingTuesday fundraising training

GivingTuesday fundraising training

Music therapy: Incorporating musical play into therapies for children

Music therapy: Incorporating musical play into therapies for children

Genetic Epilepsy

Genetic Epilepsy

Research Roadmap update (September 2022)

Research Roadmap update (September 2022)

What is Shashi-Pena Syndrome?

What is Shashi-Pena Syndrome?

The Faces of Shashi-Pena Syndrome

The Faces of Shashi-Pena Syndrome

2021 Annual Report

2021 Annual Report

ASXL 2020 Questions and Answers with Wendy Chung and Bianca Russell

ASXL 2020 Questions and Answers with Wendy Chung and Bianca Russell

Building ASXL Research Community

Building ASXL Research Community

Managing chronic gastrointestinal troubles: cyclic vomiting and constipation

Managing chronic gastrointestinal troubles: cyclic vomiting and constipation

Specialized therapies: Family experiences with non-traditional therapies

Specialized therapies: Family experiences with non-traditional therapies

Transitions through puberty

Transitions through puberty

Managing self-injurious behavior

Managing self-injurious behavior

2022 ASXL Family Conference - who's attending?

2022 ASXL Family Conference - who's attending?

Research update: DNA methylation patterns associated with Bohring-Opitz Syndrome

Research update: DNA methylation patterns associated with Bohring-Opitz Syndrome

Bohring-Opitz Syndrome Awareness Day

Bohring-Opitz Syndrome Awareness Day

Family experiences with orthopedic surgeries

Family experiences with orthopedic surgeries

Invest in research - Laura's message

Invest in research - Laura's message

Hope through research

Hope through research

Ask-a-Researcher: Valerie Arboleda, MD, PhD

Ask-a-Researcher: Valerie Arboleda, MD, PhD

Shashi Pena Awareness Day

Shashi Pena Awareness Day

Ask-a-Researcher: Dr. Rosanna Weksberg and Zain Awamleh, PhD

Ask-a-Researcher: Dr. Rosanna Weksberg and Zain Awamleh, PhD

Introduction to ASXL-related disorders

Introduction to ASXL-related disorders

2021 ASXL Family Conference: ASXL1/Bohring-Opitz Syndrome session

2021 ASXL Family Conference: ASXL1/Bohring-Opitz Syndrome session

2021 ASXL Family Conference: ASXL2/Shashi-Pena Syndrome session

2021 ASXL Family Conference: ASXL2/Shashi-Pena Syndrome session

2021 ASXL Family Conference: ASXL3/Bainbridge-Ropers Syndrome session

2021 ASXL Family Conference: ASXL3/Bainbridge-Ropers Syndrome session

Join the Sustainers Circle

Join the Sustainers Circle