In the News
Our organization makes it a priority to stay at the forefront of keeping our families, followers and the general public current on news in the SYNGAP1 space.
CURRENT NEWS HAPPENINGS
Bridge the Gap – SYNGAP Education and Research Foundation answered the FDA’s call for groups to submit a Letter of Intent (LOI) to the FDA requesting to host an externally-led Patient Focused Drug Development (PFDD) meeting. The FDA recently accepted and approved the LOI for SYNGAP1 submitted by Bridge the Gap – SYNGAP Education and Research Foundation. This meeting will give the SYNGAP1 community an opportunity to share personal insights that can be invaluable to the process of developing new treatments for the disease.
We had an incredible turnout at out 2nd Baltimore Family Meetup. So thrilled to have so much love and support for our mission! Our army is getting bigger and we will find treatments together! Never underestimate the power of a small community coming together all on the same page to get to treatments! It was a pleasure to explain in person the mission of our organization and strategy to get there. The latest developments in our new news have undoubtedly reinforced and confirmed our direction to get to treatments. We are doing EVERYTHING RIGHT and we will continue to dominate this disorder and do everything strategically possible to get there! Supporting our initiatives is so important! The FDA meeting is one of the biggest accomplishments and steps in the right direction to get to treatments. Money spent strategically on programs and our goals are going to give this community tangible deliverables. And BTG delivers credible and valuable resources to get to treatments! Our community and our children come FIRST! Everything we do is for our community! We are never stopping! Never question our determination, unification or dedication to our mission. Education, Research and Awareness! Nothing will stop us!!
We are excited to announce our new regional office located in Washington D.C. This will provide shared office space for our organizations in Washington, DC. This office space will be a place to foster alliances and innovation among rare disease organizations and amplify the community’s voice on Capitol Hill. Our workstation will be furnished with a standard desk and chair, connections to WiFi and a wired connection to the office printer. An office manager will be on hand to assist participating organizations with scheduling conference room use, welcoming guests, and other administrative tasks. Our organization will be able to benefit from the low monthly cost of $100 and will benefit from tax exclusions for hotels and other taxable expenses, saving the organization hundreds of dollars a year.
November 18, 2019 ~ Bridge the Gap - SYNGAP Education and Research Foundation Hosts the First SYNGAP1 FDA Patient-Focused Drug Development Meeting
Bridge the Gap – SYNGAP Education and Research Foundation announced they will host the first SYNGAP1 Patient-Focused Drug Development Meeting – SYNGAP1: Patient Voices. It will be held on November 19, 2020 in conjunction with their International SYNGAP1 Conference at the NIH/NINDS Neurological Center in Rockville, Maryland.
November 14, 2019 ~ CBD Safety, Science and Policy Summit
November 14, 2019, The Bridge the Gap – SYNGAP Education & Research Foundation, in conjunction with the American Brain Coalition (ABC), recently convened a meeting of organizations representing patients, clinicians, researchers and payers interested in the use of cannabidiol (CBD) and other cannabis-derived products for therapeutic purposes. Participating organizations included the American Academy of Neurology, American Academy of Child & Adolescent Psychiatry, American Psychiatric Association, American Society of Addiction Medicine, BIO, and a number of ABC’s patient organization members.
As many Bridge the Gap families are interested in trying CBD and cannabis-derived products to address seizures and other serious health issues, we’re forced to fly blindly for lack of critical information concerning the efficacy, dosing, safety, and quality (i.e., what’s in the bottle). This is unacceptable and places our children at risk of additional harm. Our community’s needs, like those of other stakeholders we’ve met with, demands a federal regulatory approach that results in FDA-approved medicines prescribed and used within the confines of a patient-clinician relationship.
Our multi-stakeholder discussion identified shared goals and objectives to collectively pursue and advocate for as legislation and regulatory efforts go forward to allow for the optimal exploration of the therapeutic potential of CBD and other cannabis-derived products. These include:
- Eliminating barriers and incentivizing research
- Encouraging the development of scientifically rigorous evidence relevant to specific conditions
- Enabling clinical decisions based on informed discussion between patients, caregivers, and clinicians
- Discouraging the current, largely unregulated environment’s reliance on information based on hype, misrepresentation & pseudoscience
- Actively monitoring the safety and quality of CBD products and removing bad actors
We’re committed to participating in a one-day “CBD Safety, Science and Policy Summit,” for stakeholders and policymakers. The Summit is scheduled for January 15, 2020, in Washington, DC, and Bridge the Gap members interested in attending should contact firstname.lastname@example.org for additional information, and Monica Weldon at email@example.com
May 21, 2019 ~ National Organization for Rare Disorders (NORD) and Trio Health Present Findings from Real-World Studies on Rare Diseases
PRO56 – UNDERSTANDING DISEASE AND BURDEN IN SYNGAP1-RELATED NON-SYNDROMIC INTELLECTUAL DISABILITY (NSID) PATIENTS USING A PATIENT REGISTRY DATABASE. – Bridge the Gap – SYNGAP ERF (https://bridgesyngap.org/)
APRIL 17, 2019 ~ Embryo editing with CRISPR
APRIL 10, 2019 ~ How families are driving the study of autism genes
Parents of children with rare autism-linked mutations are banding together for support and to join forces with scientists, accelerating the pace of research.
March 6, 2019 ~ Mum's 'tears of joy' as disabled daughter amazes family by completing lifelong dream
November 26, 2018 ~ Scripps Florida discovers 'broken gene' leading to issues with touch, pain in autistic children
November 19, 2018 ~ SYNGAP1 heterozygosity disrupts sensory processing by reducing touch-related activity within somatosensory cortex circuits
September 17, 2018 ~ Bridge the Gap - SYNGAP Education and Research Foundation Presents Their First Research Grant to Texas Children's Hospital
May 10, 2018 ~ SYNGAP1 included in Top 2 Single Genes linked to Autism Analysis of sequences pegs 99 top autism genes
November 17, 2017 ~ Cypress mom launches research foundation seeking treatment for son’s rare condition
November 18, 2016 ~ SO PATIENTS ‘FEEL, FUNCTION & SURVIVE BETTER’ NINDS, Nonprofits Work Toward Shared Goal at Forum
August 4, 2016 ~ Representative McCaul Urges Reauthorization of Priority Review Voucher Program
April 2, 2015- Scripps Florida Scientists Win $3.3 Million Grant to Accelerate Development of Treatments for Intellectual Disability, Autism, Epilepsy
April 2, 2015 – Scripps Florida Scientists Win $3.3 Million Grant to Accelerate Development of Treatments for Intellectual Disability, Autism, Epilepsy