Amazing nonprofit! They go above and beyond to stay informed and do everything humanly possible to help families with STXBP1
The dedication and compassion from the stxbp1board members is outstanding. I cannot believe how we have grown in the last 6 years. We are forever grateful for each one of our members. In a world that knows so little about stxbp1 mutation and it's impact on our children..they are a ray of hope. I fully believe they are advancing us toward a cure!
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Our story is similar to a lot of stxbp1 families. We knew something wasn't right with our grandson at birth. Doctors dismissed us until finally we got the diagnosis. We were handed one study the doctor found on the internet and they told us reach out to other parents on social media."They know more than we do".
This led us to our extended family...the stxbp1 foundation and all of it's members. We couldn't have survived without them the last 5 1/2 years.
It is unbelievable what a group of determined, loving parents can accomplish. When diagnosed, Jaxson was one of less than 200 people in the world with stxbp1. Our numbers have more than tripled. I suspect there are so many more families that never got the diagnosis. The foundation's goal is to find and support them. Then we WILL find a cure.
I don't know how to thank the foundation for their selfless dedication. All I can say is that we are forever grateful.
The STXBP1 foundation has been a great blessing for my family, my daughter was diagnosed at 9 years old with this devestating diagnosis. I spent years chasing answers only to run into false hopes from unconfirmed diagnosis. This foundations has changed this for us with their hard work and dedication to finding a cure. It has given us hope as well as a community of others going through similar struggles.
The STXBP1 Foundation has been the biggest blessing to my family. My daughter received her diagnosis at a little over a year old and we were absolutely devastated. I had no one to talk to as her disorder was so rare, but then we found our STX family and the STXBP1 foundation. This foundation and these people provide us with more hope and love than we ever imagined. We are so thankful for the foundation for providing us with a stx family and the hope for a cure.
The STXBP1 Foundation does work that is extremely valuable to those affected by an STXBP1-related disorder. There are no other resources that focus on research, raising awareness and support for the STXBP1 community. Their efforts to fund research into treatments and to expand the medical community’s understanding of the disease is unparalleled.
The STXBP1 Foundation is an amazing asset to our community. Their hard work and dedication to our children does not go unnoticed. We are forever grateful!
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I'm not sure where our family would be without the help and support of this organization. They have been a guiding light in a world of darkness providing comfort, insight, resources, and most of all hope. I couldnt imagine how much more daunting and overwhelming our STXBP1 journey would be without their presence
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Our daughter was diagnosed at 3 months old and this organization was the first place we looked to for understanding. They have been amazing and absolutely vital throughout our journey with STXBP1. I can't imagine where the STXBP1 community would be without the STXBP1 foundation and I wouldn't want to.
If it wasn’t for the STXBP1 foundation I don’t know who I would be as a caregiver/parent today! When I got my son’s diagnosis I had no clue what it was, nor did the healthcare professionals, as it is so rare!!! I was so worried. I thought we were alone! Shortly after the diagnosis we were led to the STXBP1 foundation. A parent led organization full of greatness! Thanks to them I know I’m not alone, I’m educated about STXBP1. I even got to attend two STXBP1 summits so far to get even more educated and to connect with other families just like mine! We even get to participate in finding a cure! To know we have this foundation gives me so much peace. We are so thankful for the STXBP1 foundation!
The STXBP1 Community is a tribe of families, friends, colleagues, and stakeholders who are embracing the power of philanthropy in remarkable ways. Through charitable investments of all sizes, the Foundation is advancing research to change the future for our loved ones with disorders related to this genetic mutation. I have never met a more dedicated community of supporters, and I am honored to be of service and to thank our many donors for helping us carve our path forward.
I was so impressed with the STXBP1 Foundation that I had to join them. The group is made up of parent volunteers using their personal skills to help find and fund a cure for STXBP1.
In particular, the STXBP1 Foundation's website is so informative. Any time I need to know something about my son's disorder, I know I can find guidance from the STXBP1 Foundation's website.
The STXBP1 Foundation is comprised of fellow STXBP1 families who are working together to create a better life for their affected child or loved one. They have been a great resource for others. They also are striving to decrease the gaps in knowledge around the disorder, and finding better treatments for this rare disease. I volunteer my time as a board member and as an STXBP1 family member, and I donate frequently to the causes for this organization.
The STXBP1 Foundation is a successful non-profit that has leveraged fundraising campaigns that are both unique and also very relevant to the STXBP1 disorders community. The "Move-to-Cure" annual event encourages families to host their own local fundraising tied to getting out and "moving". This activity ties nicely to one of the bigger issues of the condition which are movement disorders. Another unique campaign is an ongoing spotlight of STXBP1 disorder afflicted patients in mini-case studies online. These are easily shareable via social channels and drive to a personalized fundraising campaign for each patients. The relevancy of these campaigns engage greater participation and assists the foundation in creating awareness and funding research.
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The STXBP1 Foundation was chartered in 2017 to raise awareness and drive research to accelerate a cure for this rare genetic disease. This community of parents and caregivers truly bring the love that will help make the lives of individuals afflicted with the STXBP1 disorder better. There are so many resources available on the Foundation's website: https://www.stxbp1disorders.org/
The STXBP1 Foundation is so wonderful! To find a community to bring our rare disorder families together is priceless. They work so hard for us!
The STXBP1 foundation gave our family a family away from home. After years of not knowing the cause of our son's disability we got the STXBP1 diagnosis and felt very alone. But then through the Foundation's summits in 2019 and 2022 we met with other affected families as well as researchers trying to find a cure. To be around people that know first hand what you are going through is priceless. The knowledge the Foundation provides is irreplaceable when dealing with a rare disease like STXBP1.
The STXBP1 Foundation is often a families first point of contact following a life altering diagnosis. I’m so grateful to them for what they have provided our own family and others navigating their way through a challenging disorder. We are so grateful to them for their knowledge, leadership, and guidance.
The STXBP1 Foundation provided guidance and support to my family after my daughter was diagnosed. Through the Foundation, I've found reputable research and information and, most importantly, a community. The STXBP1 Foundation keeps hope alive for parents and families through their dedicated efforts to find treatments and a cure.
This organization has helped so many families to understand STXBP1 and provide tons of resources. But their biggest part is the community it has formed. I am a grandparent of an STX er and love their Move to Cure event each year.
The STXBP1 Foundation has been a true lifesaver for our family. The countless time and energy put into ensuring that the parents and our STXers are equipped with the knowledge, resources, love, and tremendous outpouring support is amazing. This foundation is solid and means the world to my family.
The STXBP1 Foundation is my favorite nonprofit! I love that the board is made of other parents with family members that have STXBP1. The board keeps the community updated about current research, organizes fun community fundraisers and gatherings. Thank you STXBP1 Foundation!
The STXBP1 foundation gives us so much hope! The hope for a better future for our children and finding a cure. I don't know where we would be on this without the STXBP1 foundation and I am forever grateful for the work they do.
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The STXBP1 Foundation is the absolute best! Our daughter is an STX’er and we are so very thankful for all the hard work they are constantly doing to create more awareness as well as work toward a cure! We feel very blessed to have this foundation that tirelessly works for our kiddos and families! They are amazing!
As a member of the STXBP1 family, the foundation is our center. Our source for information, the engine that drives top research and the force that brings us all together. We are forever grateful for the amazing work they do.
The leadership of this organization is outstanding. The STXBP1 community is lucky to have this organization.
The STXBP1 Foundation is a parent driven foundation dedicated to raising global awareness of STXBP1 Encephalopathy among parents, physicians, scientists, and pharmaceutical innovators in the United States and internationally in order to better understand STXBP1 and thus develop better treatments and ultimately a cure.
STXBP1 Foundation is the only nonprofit of its kind which is focused on advocacy, driving research, and providing our families and their physicians with information and resources. We believe that through our work, we are leading the charge towards improved therapies and ultimately a cure for STXBP1 Encephalopathy. We work together with researchers and medical professionals to identify and fund cutting edge research while challenging scientists worldwide to collaborate and innovate in pursuit of this goal. We are dedicated to providing families with tools to help them understand the disease. We will advocate to improve early detection of STXBP1. Our commitment is unrelenting. Every single decision is made with our patients and their families in mind and we will not stop until every single patient has access to a cure.
Our daughter of 3 months got the diagnosis STXBP1 in January 2021. I had to wait a couple of days before searching the web for what it actually meant this horrible news we were given.
Discovering the website stxbp1disorders.org and the sentence Science+love=cure made me feel that someone was doing something here and now to help these kids. It was not just a dusty Wikipedia page with information ABOUT the disease but someone had a plan for the future that involved a cure. I am forever grateful to go down this rough path with these dedicated parents.
The STXBP1 Foundation is comprised of a dedicated group of parents. These parents are so inspiring they not only raise awareness and push towards finding a cure but they provide resources for other families that may have a child with this rare disease. They have built a beautiful community with a strong support system.
When our granddaughter was diagnosed with the SRXBP1 diagnosis our daughter found the STXBP1 Foundation and we have watched the members of the Foundation embrace Brandy as well as continued to grow to fund research to help search for a cure. They continue to hold onsite and virtual conferences to help share research results and educate families of members. The board members are caring and give so much of there selves to the community.
The STXBP1 Foundation was founded by families of children with STXBP1 disorders and the foundation's mission continues to be driven by the members of this community. The hard work and dedication put forward is truly inspiring.
As the director of COMBINEDBrain (Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders), it has been an absolute pleasure to work with the STXBP1 Foundation on many projects. The leaders are incredibly hard-working and dependable, their dedication to the community is evident, and their ethics are impeccable. All of this results in real help for the patients with STXBP1 disorder. I look forward to many more collaborations in the future.
The STXBP1 Foundation is among the few true collaborative organizations I work with. The board members conduct themselves with the utmost professionalism and highest standard of ethics. Running a similarly sized organization, I know first hand the challenges that non profits face and I turn to the STXBP1 Foundation often for guidance and advice as they are an exemplary group.
The Foundation was created by STXBP1 families FOR STXBP1 families. The entire board is completely committed to supporting our community and finding a cure and works tirelessly to do so. At the basis of everything we do is a deep love for STX'ers and their families as well as for our own children and families. That love has turned into passion and determination and that passion and determination has led to overcoming seemingly insurmountable odds as a rare disease organization. While working hard for our community, we also never hesitate to step in and support each other during the inevitable challenging moments that face us as rare disease special needs parents. I can't wait to see what the Foundation accomplishes over the next couple of years.
Incredible group of parents committed to finding a cure. Parents speak up and use their strengths to get the work done. Quick responses and communication about what’s next and what’s coming.
STXBP1 Foundation is committed to helping the entire STXBP1 community, and accelerating research for therapies and a cure for STXBP1 patients.
STXBP1 Foundation is committed to helping STXBP1 patients, and to accelerate the creation of therapies and eventually a cure for those who have STXBP1.
The STXBP1 Foundation is making a BIG impact.
STXBP1 is a rare genetic epilepsy affecting children and adults. Patients experience a spectrum of symptoms that include intellectual disability, developmental delay and motor difficulties.
For 3 years the STXBP1 Foundation has helped lead advocacy, awareness and supported the development of therapies. Brilliantly run and managed!
The organization started in 2017 and I believe STXBP1 is the only organization committed to helping STXBP1 patients.
I would love to see speeding up the development of therapies and hopefully a cure for patients with STXBP1.
If you are not aware STXBP1 is a rare genetic epilepsy.
Patients also have a spectrum of other symptoms including intellectual disability, developmental delay, and motor difficulties.
It is a very debilitating experience for patients and naturally exhausting on family even care givers.
I encourage folks to support this organization.
Thank you,
Mitchell