Slc6a1 Connect

SLC6A1 Connect has been life changing for us. We have a community that support us and understand every step of this journey. We have hope for our son and we don't know where we would be if it wasn't for SLC6A1. We are forever grateful.

Parents who receive a diagnosis of a rare disease for their children are devastated and feel alone with this gargantuan challenge in their lives. SLC6A1 has only been diagnosable for a few years but the SLC6A1 founder, Amber Freed, has already founded this community of parents and researchers working together for a cure. My family has found a community within SLC6A1 Connect and we know we are not alone. Every $ raised by SLC6A1 Connect is put directly into research and treatments, such as the recent Ravicti trials, are already helping the children in this community.

Amber Freed has also gone to great lengths to connect SLC6A1 Connect with other rare disease communities. This ensemble is working together to make a difference in people's lives today and far into the future. I am confident that SLC6A1 is treatable. This is the community that will find a cure and make sure the world knows about it.

Slc6a1 Connect have been the guiding light for everyone affected by this rare disease. I am awed and inspired by Amber and the team who have been providing real human connection and support. But not only that, they are striving to find a cure to help all of our kids, now and to come. Thanks to Slc6a1 Connect, we are not alone wondering what is next for our kids. we are connected, informed and empowered!

We’ve had the opportunity to fundraise and donate for this nonprofit and both experiences have been amazing. Immediate receipts with tax ID information. You cannot donate to a better cause!

Without SLC6A1 Connect, we would be lost. We are based in Australia, and so SLC6A1 Connect was the only advocacy group available to our family for support. Amber Freed is an inspirational and relentless fighter, who will not stop until a cure is found for our kids.

This non profit is moving scie tific mountains for this rare disease community. It is bringing families together, scientists, researchers and doctors together. It cares about the children and families affected by SLC6A1, and its board work relentlessly to ensure the science keeps evolving. It has meant we can have hope for a better future.

When my child was first diagnosed, I was so overwhelmed with the news and lost on where to begin as the next steps. S.c6a1 Connect was such an amazing resource and community.

SLC6A1 Connect is truly a lifesaver for our family and many more SLC6A1 families. This organisation moves the world to ensure treatment and eventually a cure will be available for our kids. SLC6A1 is always very helpful when I have questions and always willing to help. We are very grateful for all the work they do and they give us hope for a better future for our son.

SLC6A1 Connect has been a lifeline for us. Connecting with other families on a similar journey to ours has been amazing. I don't know where we would be without them!

When our daughters were diagnosed with SLC6A1 it was terrifying! The geneticists and neurologists we were working with had never heard of the condition before and shared what little information they could find with us. When we found SLC6A1 Connect, it brought us so much comfort. The women who lead SLC6A1 Connect are relentless in their efforts to not only connect parents of those affected by SLC6A1, but to increase awareness, further research, and ultimately cure this genetic mutation. It is amazing how much they have achieved in such a short amount of time. I am so grateful for this nonprofit and all they do to support individuals with SLC6A1 and their loved ones.

SLC6A1 Connect has provided years of support to our family and has spearheaded and driven research for our rare disease that has changed the lives of our child as well as so many others.

The fearless moms who lead SLC6A1 Connect are changing the outcome of our children’s lives. They work tirelessly (for free I might add) to push forward every option for treatment as well as a cure. Because of SLC6A1 Connect I have hope for a better future for my son.

This group has welcomed me with arms wide open. A judgement free zone to express my challenges of raising a child with special needs. Words of encouragement and advice from others in this group. Thank you Amber Freed for creating a safe supportive space full of invaluable resources.

I am a parent of a daughter with SLC6A1. This past year I volunteered with SLC6A1 Connect, helping out with recruiting for natural history studies, connecting with parents of newly diagnosed children, representing the organization in advocacy meetings, and sharing with SLC6A1 parents what I’ve learned about the organization’s mission and the extensive work being done by research scientists, clinicians, advocates and parents to cure this disease and improve the lives of SLC6A1 patients.

I learned that donations to SLC6A1 Connect are used to fund seed grants to researchers with promising treatments for SLC6A1. For example, A $125,000 seed grant from SLC6A1 Connect was awarded to Dr. Katty Kang’s lab at Vanderbilt University in 2019 to further her research into SLC6A1 and treatment options using phenylbutyrate. This seed grant enabled Dr. Kang to kickstart her SLC6A1-targeted research and ultimately receive a 5-year $2.2 million 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!

The non-stop work of SLC6A1 Connect has put a phenylbutyrate treatment option on the table that has the potential to greatly improve the lives of our children. We will not stop until we have several viable treatments that can free our kids from their seizures and restore their abilities to learn, communicate and self-regulate. After seeing what this organization has accomplished and how determined the members are to succeed, I can wholeheartedly say they deserve a 5-star rating.

This is a fantastic organization, run by moms trying to help their children.

The people involved with Slc6a1 are some of the most selfless people in the world. In addition to the parents working so hard to fund a cure for this rare disease that is attacking their precious children, the researchers and doctors are clearly so devoted to this cause. God’s Blessings to you all!

this organization brings hope to so many families!

I have seen what they’ve help you provide financially for new medications and it’s working! Keep up the contributions to help those in need❤️

Change-makers! An incredibly passionate non-profit motivated to serve all individuals with Slc6a1.

I am constantly in awe of this organization. The fundraising efforts, the families behind it all, the doctors and research, and most of all- the little heroes who are living with this, fighting, and rising up above all odds!

This amazing group of parent work hard to raise money to fund a cure for their children effected by this genetic disorder. I have been to many of their fundraisers and see the fire and determination to cure their beautiful children of this devastating disorder.

They work tirelessly with the goal of finding a cure ASAP. The updates and stories keep the donors connected to the cause. They make the donors feel appreciated and invested because no amount of giving is too small, and every dime is appreciated.

An amazing non profit organization that is literally saving children's lives. This organization is providing the resources to other families in a way of connecting, raising funds for research and clinical trials/medication.

The Feldman family is so dedicated and determined to find a cure for Will and the other children who suffer this rare condition, it is so motivating, I do anything I can to help them raise money for their cause. The sheer drive they have as a whole family is just mind blowing and we need more people like the Feldmans in this world.

Parent advocacy is so important when it comes to rare diseases, SLC6A1 Connecticut helps families from around the world gain access to researchers and life saving experimental treatments

They are raising money for a good cause. My great niece who has recently been diagnosed with this terrible disease and our family are praying for a cure for Aubrey������ Any donations will help!
I don’t know much about this disease but that it’s very rare.

Raising money for a worthy cause and to find a cure for SLC6A1!

This parent run non-profit is always thinking outside the box to create fun fundraisers to help find a cure for their kids’ genetic disorders. The parents from across the country collaborate and work together for a common cause.

The parents that run this organization have more passion for the cure that any other organizational leaders could. They have fun & engaging non-profit events that help educate the criticality of rare diseases, especially SLC6A1 that is impacting their childrens’ lives. Instead of letting this disease cripple their lives, they turn their energy into fuel to find a cure.

The cutest little boy in my hometown is affected by Slc6a1 and this nonprofit has helped him get into the Ravicti trial and dramatically lowered his seizures! The whole town was just elated to hear about the progress!

SLC6A1 Connect has given our family hope, support, and knowledge as we navigate our daughter’s medical journey. It’s a wonderful organization that truly wants to help those who suffer from this disease.

This non-profit has helped a friend’s child accomplish so much as a child with a regressive disease. He is actually progressing and doing great. What an awesome group to support these families.

My husband and I became aware of LC6A1 Connect through our daughter, who works for someone whose child is affected by LC6A1. What an amazing group of people, working to advocate, and ultimately find a cure for this scary disease.

A college classmate of my son has a five year old boy who has been diagnosed with Slc6a1. Since his diagnosis, they have continued to learn all they can about the condition and have met many other families who have also been affected. As a result, they have taken on the large task of raising funds for research. They have created this non-profit, held numerous fundraising events, brought about widespread awareness of the disease, and have enriched the lives of everyone involved. They are extremely passionate and tireless in their efforts to fund research and find a cure. I had the opportunity to help with one of their many fundraisers and know their efforts are genuine and focused. A group I love being involved with.

Kind and incredible people working for SLC6A1 Connect! Love it so much, and I believe so much in the cause!

I hear lots of positive comments about them! They are a great nonprofit!

Doing amazing work for those with this disease. Whitney is a wonderful mom, who has helped spread the word on SLC6A1 and she has put a voice and educated so many of us.

Slc6a1 is a group of hard working moms raising money for the cause. They are an excellent organization

This has changed my friends sons life!!! Has given him His life!

We have a family friend with a child that has Slc6a1 and they are the most loving family! We love all the charities Whitney is doing for their son.

One of the best charity organizations anywhere! They strive to educate & inform while raiding the ever important dollar.

After many years it is great to finally have a community to connect with regarding this rare medical condition. We have felt alone and unheard....and glad to finally have connections who understand what we are experiencing and can share with them our triumphs and challenges.

The Slc6a1 nonprofit team is the hardest working & most deserving group of folks I've ever witnessed. This charity has a special place in my heart because of a little boy, William Feldman, that I've grown to love! ❤

SLc6a1 is a non-profit doing vital research to find a medication to help the children with this debilitating and rare disease.

Parents of the children have to travel to other states annually for a course of tests, including the EEG.

The drugs that have been developed by researchers are starting to make a big difference in the lives of the little ones.

I have been lucky enough to know a wonderful family that has a young boy with this disease. The parents and grandparents work tirelessly year round hosting fundraisers.

In just the last few years the money raised by this family, and many others, have added positive results in the advancement of research.

Their sons violent seizures have been reduced significantly on a daily basis.

My hope is that this non-profit gets the help and funding it needs for continued research. What a financial, physical and emotional relief this would be to families all over the USA.

Thank you,
Most Sincerely

A friend’s young son has benefited greatly from trial therapy for this condition which has terrible symptoms. He is now 4 and developing well.

Knowing a family who has directly benefited from this nonprofit is so special.

Best little non-profit out there making a huge difference and allowing us to volunteer and donate!

Such a wonderful group of parents fighting for the best things possible for their children! I have had the privilege of teaching a little guy with Slc6a1 and getting to know his family. They are the best❤️

SLC6A1 Connect has changed our families life by offering support, education and now a drug trial for our son Charlie. Amazing work by amazing people.

Knowing that there are kids in the world that suffer from this horrible disease, makes donations to find a cure all the more important! Please donate today!

Slc6a1 Connect works so very hard for all of those effected by this condition. They are passionate, driven and desire to make a difference in the lives they touch.

This organization has hosted some amazing fundraising events!

We love our Will and love fundraisers that benefit research for him and others!

I’ve never seen such a dedicated group of individuals! Bless these kids and their parents, families and friends who fight so hard for them. May they inspire others to advocate for those in need of a voice!

When I donate to SLC6a1 Connect I know exactly who I’m helping. The parents and families of these kiddos are extremely involved with their communities and schools all while searching for a cure, and that’s why I will continue to support, participate and donate to this nonprofit.

Fantastic group! Very informative and have a passion about finding away to help each person fighting this.

This charity is community minded and runs fun-filled fundraising events to support their cause.

Strong team of Moms who are moving mountains by raising money to help their kids with a rare disease! Such an impressive group!

Fantastic non-profit moving mountains for kids affected by SLC6A1.

My favorite non-profit. Moms fighting to save their children.

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!

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

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

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.

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

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.

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.

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!

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.

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.

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.

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.

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.

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!

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.

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

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 :)

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.

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.

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!

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.

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.

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