VIDEO PRESENTATIONS
Whatever it is, how you tell your story can make all the difference.
Welcome to the hub for compelling stories, in-depth knowledge, and expert insights from Monica Dudley-Weldon, a renowned leader in rare disease advocacy, biomanufacturing, and strategic development. Monica’s journey is not just about sharing information—it’s about weaving stories that resonate, educate, and inspire action..
Why Monica Dudley-Weldon?
With a unique blend of life sciences expertise, regulatory insight, and a personal connection as a mother of a caregiver of her son Beckett, living with a rare disease, SYNGAP1, Monica brings a rare perspective to every topic she covers. Her storytelling is grounded in real-world experience, making complex subjects accessible and engaging for diverse audiences.
Explore Monica’s Video Presentations
Dive into a curated collection of video presentations where Monica discusses:
Rare Disease Advocacy: Learn about the latest advancements in clinical trial design, regulatory policies, and patient advocacy.
Biomanufacturing Insights: Discover the future of biotech and defense weapon systems, focusing on industry-based policy and strategic development.
Health Legislation & Consulting: Gain insider knowledge on navigating the intricacies of health legislation, policy changes, and regulatory frameworks.
Engage with Stories that Matter
Monica’s expert storytelling goes beyond the facts. She connects the dots between policy, industry, and patient needs, offering a narrative that informs and drives change. Whether you are a healthcare professional, a policymaker, or someone affected by the issues discussed, these stories are crafted to make an impact.
Watch & Learn
Ready to be inspired? Please browse her video library and find presentations that speak to your interests. Each video is designed to provide valuable insights and actionable takeaways that you can apply in your field.
Book a Speaking Engagement
Are you interested in bringing Monica’s expertise to your event? Contact us to book a speaking engagement, and let her stories shape the future of your organization or community.
Overcoming SYNGAP1: A Family's Journey of Hope & Resilience
Catch the latest episode of Hatching for Health as we dive into an extraordinary story of courage and resilience. In this episode, we feature Monica Dudley-Weldon from the Syngap1 Foundation and her twins, one of whom bravely battles the rare condition SYNGAP1. Dr. Jimmy Lloyd Holder, the committed neurologist leading the research into this challenging condition, is Accompanying their inspiring journey. Discover the strength of this family and their ongoing pursuit of hope amidst adversity. If you missed the live airing, here's your chance to be part of this inspiring episode. Don't forget to like, share, and subscribe to our channel to stay updated with more inspiring stories on Hatching for Health.
Five Minutes with Monica Weldon
Monica explains why being a citizen scientist is critical in helping advance the search for treatments.
New Era of Patient Advocacy
Monica Weldon is a rare disease advocate whose son, Beckett, has SYNGAP1. Beckett was one of the first people diagnosed with SYNGAP1, and since that day, Monica has not stopped talking about it. Advocacy has become Monica's platform, and she believes that advocating and telling your story are among the most important things a newly diagnosed patient or family member can do. She says it takes one person to start the movement as long as you never stop sharing your story. Get involved in
Two Moms Fighting For Two Different Rare Causes
Interview with Chip Baker - The Success Chronicles Monica Weldon and Kristin Smedley discuss their experiences of fighting for the rare causes they have encountered in their family. @monicaweldon son...syngap @kristinsmedley sons... blindness Two great stories of mothers fighting to make a difference in our world.
MAKING GOALS WITH YOUR SCIENTIFIC ADVISORY BOARD
At the National Organization for Rare Disorders (NORD) Rare Disease & Breakthrough Summit in Washington D.C., Rare Disease Report spoke with Monica Weldon, founder of Bridge the Gap – Syngap Education and Research Foundation, about her advice for nonprofit organizations wanting to create goals for their scientific and medical advisory board members. Check out this great video
Building Disease-Specific Educational Tools and Resources
With Monica Weldon, Kristin Smedley, and Carrie Ostrea. While there are an estimated 7000 rare diseases cumulatively, patients with each rare disease typically do not have an opportunity to meet others with the same challenges. This presentation will explore the impact of disease-related educational information and suggest ways to transfer that same impact to the rare disease community through collaboration with medical students and rare disease patient groups.
2018 EPILEPSY PIPELINE CONFERENCE
Monica Weldon's Presentation is at 1:30 - 1:50. View the conference agenda at https://epilepsy.com/pipeline2018. Every two years, the Epilepsy Foundation holds its Pipeline Conference to bring together decision-makers with a stake in epilepsy treatment, therapeutic innovation, and product development. This exciting meeting provides a forum for surveying new therapies in development, exploring future advancements, and encouraging collaborations and partnerships.
Innovative Patient Education & Support Options
Bridge the Gap—SYNGAP Education and Research Foundation's President/CEO, Monica Weldon, will share the diagnostic journey that led her to work full-time in rare disease advocacy and form an organization supporting the SYNGAP1 community. Dawn Laney, a clinical genetic counselor at Emory University and founder of ThinkGenetic, will present ThinkGenetic's approach to serving and empowering people with genetic diseases.
Monica Weldon of Bridge The GAP - SYNGAP talks about this rare neurological condition that is linked to autism.
Monica Weldon is a passionate advocate for rare diseases, driven by her connection to her son, Beckett, who was one of the first diagnosed with SYNGAP1. SYNGAP1-related intellectual disability is a neurological disorder marked by moderate to severe intellectual disability, often noticeable in early childhood through delayed speech and motor skills. The condition is also associated with weak muscle tone, developmental regression, epilepsy, hyperactivity, and autism spectrum disorder. Monica emphasizes the importance of advocacy and storytelling for newly diagnosed patients and their families, believing these actions are crucial in navigating the challenges of rare diseases.