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2021 Top-Rated Nonprofit

Slc6a1 Connect

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Nonprofit Overview

Causes: Health, Specifically Named Diseases Research

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

Results: We are Fighting Like Mothers to help our Children. Every penny raised goes straight toward research. We are advancing 3 translational therapies that are curative approaches for this tragic neurological disease. The work we are doing will fuel knowledge in autism, epilepsy and many psychiatric conditions.

Target demographics: children affected with rare neurological diseases

Geographic areas served: countries across the world

Programs: research, funding, resources, and family connections.

Community Stories

33 Stories from Volunteers, Donors & Supporters

Donor

Rating: 5

Wonderful families and children benefiting from this exceptional non-profit organization. A cure exists and these Mothers are raising funds to cure these children. Please consider helping change the life of these children!

Donor

Rating: 5

Unbelievable group of Moms that run this nonprofit and every cent goes towards a search for a cure!

Donor

Rating: 5

The progress made toward SLC6A1's cure since this non-profit was created is unparalleled!

Volunteer

Rating: 5

SLC6A1 Connect has given us a forum to discuss our son's difficulties and needs with other families. The support has been outstanding and the work that is being done to cure our children is phenomenal!

Professional with expertise in this field

Rating: 5

This organization has ignited fires for many rare disease families. I'm an aunt of a rare disease child and I now realize I'm a friend to other aunts/uncles and parents of rare disease to endless rare diseases. The healthcare system needs to fix this issue of "too rare to care" and I'd put money on this non-profit to do so. I'm so impressed with everything they've accomplished.

Professional with expertise in this field

Rating: 5

SLC6A1 Connect is composed of moms fighting for their children. Please help them.

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Volunteer

Rating: 5

This is my favorite charity to raise money for because I know every dollar goes toward developing a cure!

Comments ( 1 )

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afreed 11/29/2020

This makes me (us) so beyond happy. Thank you so much.

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angela0199

General Member of the Public

Rating: 5

There are so many kids out there that deserve better!!! SLC6A1 Connect is trying to give them a chance at a full life. I know someone with this disease and it's really terrible. I pray for the day that there is a cure for everyone affected. I do think we can get there someday.

Phteven M

Volunteer

Rating: 5

I've had the pleasure of meeting Amber (co-founder) and she's such a passionate person who is changing the rare disease game. I hope this group gets the money they need for a treatment for these kids.

Mark F.2

Donor

Rating: 5

SLC6A1 Connect is a wonderful organization led by 100 pct volunteer moms where 100 pct of donations go toward research. They are the definition of Great NonProfit!

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Board Member

Rating: 5

This non-profit is an outstanding organization led by a visionary leader where 100 pct of the donations go towards finding a cure!

Comments ( 1 )

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afreed 11/29/2020

Thanks for the kind words :) I can probably say the same thing back at you.

Nonprofitgirl

Advisor

Rating: 5

Every dollar goes to curing a rare neurological disease.

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Client Served

Rating: 5

SLC6A1 Connect has driven research further in two years than most organizations do in ten years.

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General Member of the Public

Rating: 5

This came across my feed and of course I had to follow the journey. I was in complete awe. The amount of love and determination is unbelievable. I can only hope for them and know they all deserve the best outcome.

Comments ( 1 )

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afreed 11/29/2020

We love kind words such as these, Ms. Reynolds. Thank you!!

General Member of the Public

Rating: 5

I just came across this non-profit in People magazine and I am just blown away. The love that a mother has for her child is absolutely amazing and I wish them the best on their journey to obtain a cure for their son and other children with similar illnesses.

Comments ( 1 )

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afreed 11/29/2020

Dear Stephanie, thank you so much for your kind review of our organization! :)

Volunteer

Rating: 5

My wife has helped with some volunteer events for this group. Recently I volunteered too and it's such a cool organization. They really care about the kids and do everything possible to help them live normal lives. I'm grateful my family doesn't have to go through these situations so I'll try to give back with donations and volunteering.

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afreed 11/29/2020

We can't express how much we appreciate your time, energy, and support! We absolutely could not do what we do without the help of generous people like yourself.

Donor

Rating: 5

I stumbled upon this nonprofit awhile ago after seeing some of their stories on a national news network. I did a little bit of researching- as I had never heard of this disease- and it's insane what work SLC6A1 Connect has done in such a short time for kids with this horrendous disease. I really hope they reach their goals to cure these poor sick children.

Comments ( 1 )

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afreed 11/29/2020

We love hearing about how people have found us. Just building these kinds of connections has made our job worthwhile.

Donor

Rating: 5

I was recently introduced to a non-profit led by a mother whose child has a rare neurological disease. Unbeknownst to me - our healthcare system places the entire burden of funding research, finding answers, and creating cures on these already maxed out parents.

SLC6A1 Connect is inspiring on so many levels. I hope they succeed in knocking one rare disease off the registrar.

Comments ( 1 )

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afreed 11/29/2020

You're right- the system is absolutely not built in our favor. But we will overcome this terrible disease with support from people just like yourself!!

Volunteer

Rating: 5

SLC6A1 Connect is a powerhouse of Mom's advocating for kids with rare disease. I am blown away by the traction they have made funding a gene therapy for kids with this disease. I would love to see SLC6A1 Connect be recognized!

My company has held several fundraisers for this non profit and I have thoroughly enjoyed participating!

Comments ( 1 )

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afreed 11/29/2020

"Powerhouse of moms" - amazing... thank you. How could we do all of this without people like you???

Donor

Rating: 5

This organization is run by moms who are volunteers and every dollar goes into research and finding a cure. They are dedicated, hard working and very savvy. Great organization.

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afreed 11/29/2020

Thank you for your review and support!

Volunteer

Rating: 5

Great charity, great cause! The goal of SLC6A1 Connect is to find a cure, and I am confident they will achieve it!

General Member of the Public

Rating: 5

Nothing but love to this amazing group of people pushing the cure forward for a rare genetic disease. SLC6A1 stands for all that is good in the world. We are happy to have them on our side :)

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afreed 11/29/2020

Thank you so much for your thoughts!

1 Anjelica F.

Donor

Rating: 5

SLC6A1 Connect is a truly amazing nonprofit. Amber is an absolute rockstar, working tirelessly for not just her son, but every child who is affected with this neurological disease. I have no doubt she'll find a way to fund cures that will help people with all kinds of genetic mutations.

Comments ( 1 )

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afreed 11/29/2020

Your support keeps motivating us to push even harder for a cure :)

Client Served

Rating: 5

SLC6A1 Connect is really helpful for parents with children with SLC6A1. From helping with finding the right doctor to providing information about all sorts of things SLC6A1 related. The work of SLC6A1 Connect is much needed and highly appreciated. Amber Freed always answers our questions and is always willing to help. Therefore she has given our group of patients hope by starting up research to SLC6A1 gene therapy.

Comments ( 1 )

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afreed 11/29/2020

Knowing that I (we) can have such an impact on others really touches our hearts and keeps us going. Thank you.

General Member of the Public

Rating: 5

SLC6A1 CONNECT has worked tirelessly and effortlessly to provide hope to our family. Without them, there would be no cure in the works for a genetic disease that our baby girl, Rowen, was born with. Thank you to Amber, and everyone else who has pitched in and changed out outlook on the future.

Comments ( 1 )

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afreed 11/29/2020

You are so welcome. I (we're) just in such awe that we've been able to build and provide a community of others just like us. Thank you!!

Sarah N Todd F.

Client Served

Rating: 5

SLC6A1 Connect was created to raise awareness and funding of a very rare Genetic disorder. One that my child has! This is the one and ONLY non-profit to raise awareness and funds for our gene mutation SLC6A1. I am so thankful for the opportunity to be part of this Community and excited to see the research and trials in the very near future!

Comments ( 1 )

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afreed 11/29/2020

Although we never want anyone to go through what we do, we're so happy you found us and are now a part of this community.

Michelle B.7

Volunteer

Rating: 5

Before we were diagnosed, we spent three years on a diagnostic odyssey.

When our son was diagnosed we were even more afraid! There was no information, no treatment. We were all alone with one article that had twelve cases from around the world. We felt hopeless. Amber came into our lives very shortly after our son’s diagnosis. She created SLC6A1 Connect. This beautiful woman does not sleep!! She is an angel!! We will help her in every and anyway. We now have hope for a cure for our beautiful, sweet, and loving son along with all the other children with the SLC6A1 diagnosis!

Comments ( 1 )

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afreed 11/29/2020

Michelle, we are so happy you found us and are a part of our community. How much has changed for us in just one year?! Incredible.

Client Served

Rating: 5

Our young son was recently diagnosed with SLC6A1, and immediately after the diagnosis we felt discouraged and alone. But shortly thereafter, we found SLC6A1 Connect. We have been inspired by their mission, determination, and drive, and have found a community support group as they work towards finding a cure.

Comments ( 1 )

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afreed 11/29/2020

We're so happy to have you, Nathan. Thanks for everything you've done to further research and build our community!

Donor

Rating: 5

This non-profit helps to bring awareness and fund research for a rare genetic disorder. It brings hope to families that one day a cure will be found. My child has the SLC6A1 genetic disorder and without this organization we would be fighting this on our own. Words cannot describe what it feels like to have a community fighting with you and for you.

Comments ( 1 )

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afreed 11/29/2020

We're so happy you found us and that we can provide some kind of support during these tumultuous times. Thank you for these kind words!

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Client Served

Rating: 5

Amber and Mark Freed and this amazing organization gave my family hope when there was none. I am amazed at how far they have come in such a little amount of time. To be funding research for a medical cure for children with such a debilitating disease, we are so thankful to SLC6A1 Connect.

Comments ( 1 )

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afreed 11/29/2020

Kim, how can we every begin to thank you for all you've done?! We're just thrilled to have you here as such a nonprofit rockstar and now, dear friend.

Alexis B.2

Volunteer

Rating: 5

SLC6A1 is an awesome non profit that tries to improve thousands lifes.

Comments ( 1 )

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afreed 11/29/2020

Thank you for your kind words and volunteering!!!