Press Release

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FOR IMMEDIATE RELEASE

Contact: Amber Freed, SLC6A1 Connect
Phone: 303-907-8038
Email: afreed@slc6a1connect.org

SLC6A1 Connect Founder and CEO Receives RARE Champion of Hope Award Nomination

The Global Genes RARE Champion of Hope Awards honor and recognize true champions for rare disease.

DENVER, CO, May 2018 – SLC6A1 Connect is proud to announce that our founder and CEO, Amber Freed, has been nominated for the Global Genes RARE Champion of Hope award, which recognizes individuals, organizations or collaborations that have made an impact in rare disease advocacy, medical care and treatment, or science and technology.

Awardees will be honored at the RARE Champion of Hope Celebration on Friday, September 20, 2019, at the Sheraton San Diego Hotel & Marina as part of the RARE Patient Advocacy Summit.

Amber is so proud and honored to have received this nomination, which illustrates that the 70-hour work weeks, frequent travel, and copious tears dedicated to the foundation and advocating for SLC6A1 have not gone unnoticed. She will continue to “fight like a mother,” both for her son and for all children affected by SLC6A1.

Web Link: RARE Champion of Hope Awards

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If you would like more information about this topic, please contact Amber Freed at 303-907-8038, or e-mail afreed@slc6a1connect.org

Press Release

SLC-LogoSm

FOR IMMEDIATE RELEASE

Contact: Amber Freed, SLC6A1 Connect
Phone: 303-907-8038
Email: afreed@slc6a1connect.org

SLC6A1 Connect Earns GuideStar Platinum Seal for 2018

Potential funders can see that SLC6A1 Connect is Committed to Highest Level of Transparency

 

DENVER, CO, October 2018 – SLC6A1 Connect is proud to announce that we have earned the GuideStar Platinum Seal of Transparency for 2018. This is the highest level of recognition offered by GuideStar, an organization dedicated to revolutionizing philanthropy by providing information that advances transparency, enables users to make better decisions about the donations they give, and encourages charitable giving.

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Web Link: GuideStar Platinum Seal

Web Link: SLC6A1 Connect’s GuideStar Profile

Why the GuideStar Platinum Seal Matters

Achieving the Platinum Seal of Transparency through GuideStar means that SLC6A1 Connect has shared information with GuideStar that can be accessed by potential donors. This information demonstrates SLC6A1 Connect’s dedication to making progress toward and ultimately achieving our mission.

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If you would like more information about this topic, please contact Amber Freed at 303-907-8038, or e-mail afreed@slc6a1connect.org

Press Release

SLC-LogoSm

FOR IMMEDIATE RELEASE

Contact: Amber Freed, SLC6A1 Connect
Phone: 303-907-8038
Email: afreed@slc6a1connect.org

SLC6A1 Connect Partners with Dr. Steven Gray

Pre-clinical lab work currently underway on gene replacement therapy to treat SLC6A1

DENVER, CO, October 2018 – SLC6A1 Connect is proud to announce a partnership with Dr. Steven Gray from UT Southwestern to develop a gene replacement therapy to treat SLC6A1 mutation. Pre-clinical lab work is currently underway.

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Article: Patients with rare brain diseases help scientists open new doors for gene therapy

Why Gene Therapy?

Scientific Explanation: SLC6A1 is a heterozygous haplo-insufficient, loss of function and less than 6kb in size so the gene fits nicely into AAV9.

Patient Explanation: Despite the eligibility hurdles in place for gene therapy, SLC6A1 meets the criteria for a good fit.

How does Gene Therapy Work?

The explanation is very simple but the process is very complex. Simply stated, a good copy of the broken DNA (from anyone) is inserted into a vector (a harmless virus called AAV9) that carries the good DNA to the brain. The virus then stacks good copies of the DNA on top of the bad copies of the DNA and the pathway is opened.

SLC6A1 Connect is a patient advocacy group dedicated to improving the lives of children and families affected by SLC6A1. Our focus is to raise awareness and funding to advance scientific research that will ultimately result in a cure.

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If you would like more information about this topic, please contact Amber Freed at 303-907-8038, or e-mail afreed@slc6a1connect.org