Why do you see so many fundraising emails and posts for SLC6A1 Connect?  Where does all this money go?

I have wondered this since first talking with SLC6A1 Connect CEO and Founder, Amber Freed, after my daughter’s diagnosis in early November 2020.  Amber outlined two parallel tracks the organization was following: Research and Fundraising.

I have always been a reluctant fundraiser.  I can’t get behind a cause unless I understand where the money is going and how it is being used.  Amber’s message during that phone call emphasized the need for fundraising to further our scientific research.  I then got in touch with Kimberly Fry, SLC6A1 Connect’s Vice President and driver for our organization’s fundraising.  She was overflowing with suggestions, from Facebook birthday fundraisers and selling personalized items to organized community events and auctions. With everyone’s help even the smallest amounts add up over time.  So I created my first Facebook fundraiser for the 2020 Giving Tuesday campaign.  The response was tremendous!  I couldn’t believe so many people wanted to help.  It was empowering.

But what does SLC6A1 Connect do with this money? 

In November of 2020, Amber had already raised $2 million, with millions more needed.  Much of her family’s savings was used to launch SLC6A1 research.  When I first spoke with Amber, she brought up phenylbutyrate (brand names, Ravicti and Buphenyl) and its possibility for treatment of the SLC6A1 disorder as a chemical chaperone.  I’d never heard of Dr. Jing-Qiong (Katty) Kang and her research on phenylbutyrate at Vanderbilt until the research papers began appearing in 2021 and 2022.   Then something amazing happened in 2022.

Dr. Kang reviewing SLC6A1 Research with us during a tour of her lab in December 2022.

Dr. Kang was awarded a 5-year $2.2 million grant from the National Institute of Health (NIH) to further her research into SLC6A1 and treatment options using phenylbutyrate.  

In 2019, SLC6A1 Connect gave a $125,000 grant to Dr. Kang and her team at Vanderbilt University to pursue several avenues of research into SLC6A1, including understanding the mechanisms of the disease, the use of phenylbutyrate for treatment, as well as exploring other therapies through collaboration with biotechnology companies.  

This seed grant enabled Dr. Kang to kickstart her SLC6A1-targeted research and apply for an R01 research grant from the National Institute of Neurological Disorders and Stroke (NINDS) branch of the NIH.  R01 grants are extremely competitive and difficult to obtain. Only 50% of all submitted grant applications are discussed and then about 1 out of 5 receive funding.  

Dr. Kang, with the help and advocacy of SLC6A1 Connect, also received funding from 3 major biotechnology companies.  As a result, our $125,000 grew to more than $3 million in funding.  This means that every dollar donated to SLC6A1 has the potential to generate up to 24 dollars or more for targeted research.  That’s an incredible return for our donated dollars! 

Dr. Kang studying the iPSC cells from Maxwell, Amber’s son.

Last year SLC6A1 Connect was able to spend close to 1 million on research and advocacy.  Our approach as a non-profit is unique in that we actively seek out the best scientists first, then convince them to work with us.  Because of this advocacy on Amber’s part, we have made incredible strides in a relatively short period of time. We can’t afford to wait for the cure to come to us, we need to make it happen now.

Research, development and clinical trials are expensive, costing millions of dollars that we, as a patient advocacy organization, cannot raise solely by ourselves. NINDS of the NIH funds up to $1.25 billion in research grants each year.  CURE Epilepsy, whom we just announced we are partnering with, Simons Searchlight, and other organizations offer grants.  Biotechnology companies also offer grants for research.  

We don’t have to do this all on our own, but our small fundraising dollars are the necessary first step toward making big things happen.  A Dollar with SLC6A1 is an Investment and will be Used Wisely!

Dr. Kang reviewing SLC6A1 research with
 us during a tour of her lab in December 2022.
Marshall Biven and Carson Flamm, two SLC6A1 scientists from Dr. Kang’s research team sharing a poster of the team’s recent SLC6A1 research at the American Epilepsy Society Annual Conference, December 2022.

Sandra McEntee

SLC6A1 Mom to Kat


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