My Experience

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Monica explains why being a citizen scientist is critical in helping advance the search for treatments.

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 is one of the most important things that a newly diagnosed patient or family member can do. She says that it takes one person to start the movement as long as you never stop sharing your story.   Get involved in

Interview with Chip Baker - The Success Chronicles Monica Weldon and Kristin Smedley discuss their experiences of fighting for the rare causes that they have come across in their family. @monicaweldon son...syngap @kristinsmedley sons... blindness Two great stories of mothers fighting to make a difference in our world. 

Watch now my presentation on how to build your scientific community. 

 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

With Monica Weldon, Kristin Smedley, and Carrie Ostrea. While cumulatively there are an estimated 7000 rare diseases, patients in each of those rare diseases typically do not have an opportunity to meet others living 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 by way of collaboration with medical students and rare disease patient groups. 

 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 the field of 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. 

Bridge the Gap – SYNGAP Education and Research Foundation's President/CEO, Monica Weldon, will share her personal diagnostic journey that led her to work full-time in rare disease advocacy and to form an organization to support 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 living with a genetic disease.