The CACNA1A Foundation has been an incredible resource for our family. It’s a source in invaluable information, opportunities, and connection with other families. We are so encouraged by the incredible progress they have made in generating research and interest among clinicians and researchers to work on finding a cure for our CACNA1A kids.
We became acquainted with the Cacna1a Foundation Inc in March of 2024, immediately after our grandson was diagnosed. It provided hope and comfort to know there was a dedicated foundation for this condition. We found the website informative, helpful and easy to navigate, explaining Caacna1a in terms we could understand. We were impressed with the amount of information and resources available.
Since our initial exposure to the foundation family members have participated in fundraising races, bike rides, volunteered to help with technology and assisted organizers with the recent conference in Maryland. We have recently connected with the coordinator of the grandparent support group, now called the Community Crew, and look forward to monthly meetings.
This is a great nonprofit that is working tirelessly to understand and support the Cacna1a community and other rare genetic disorders. As grandparents it helps us know our son and his family are not alone.
S. Appel
The CACNA1A Foundation has been a wonderful resource and support to our family. We recently attended a conference they hosted and learned so much!
The Cacna1a Foundation is both, a professional community of experts to support those with this rare gene defect as well a great family where affected families can share their experiences instead of feeling alone on their journey. We are extremely thankful that we could attend the last conference from overseas online and look forward to getting more insights and making more friends in the future.
This foundation has been a great source for support and community. The fundraising and the awareness they promote is a great asset to the CACNA community.
The Cacna1a Foundation has been incredibly helpful to our nephew who was diagnosed with the genetic disorder earlier this year. Everyone at the Foundation is incredibly helpful and goes out of the way whenever called upon to help you navigate the diagnosis, share information and provide support in anyway they can. They also fund an incredible amount of research and put on a fantastic conference brining in all the different expertise together in 1 room.
Our lives have been forever changed from the CACNA1A Foundation. When our daughter was diagnosed 3 years ago we were completely lost and scared as every medical professional we traveled several hours to see told us the same thing “we don’t know enough about your daughters diagnosis to help her” When we found the CF website our despair changed to hope and a new sense of power was given to us by the foundation leaders. It is our mission to advocate for this beautiful organization to support their purpose to push science forward for a cure!
The CACNA1A Foundation is run by a powerful group of parents and other leaders who have made a significant and memorable difference in the lives of the community in a short period of time. The organization supports scientific advancement in the space including funding important grant opportunities, helps bring the community together both in-person and virtually and is pursuing new treatment options. It's an honor to work with such a dedicated and intelligent group.
When our granddaughter was diagnosed 3 years ago. This foundation was the best source of information on the latest medical information on CACNA1A. The Dr and specialists could tell us very little except that it was rare. We found so much support and love within this community and the research and Dr that are helping study this genetic mutation have given us so much hope for a brighter future.
My daughter has CACNA1A-related Epileptic Encephalopathy. She was diagnosed years before the CACNA1A Foundation existed. We didn't have any experts to turn to and we were without a community. Once the Foundation was formed, I noticed a huge impact on our family. Other families shared their experiences with various therapies and equipment. We were given more information on how her genetic mutation affects her and this led to us finding a medication that has had a huge positive impact. The Foundation Board is super well organized and dedicated. They are well respected among the rare disease community. If your child has CACNA1A, I highly recommend that you get involved with the Foundation.
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The CACNA1A Foundation is a just a little more than 1 year old and I can not even believe how much has been accomplished in this one year. The Foundation has created an amazing website with a wealth of information, has raised funds for multiple ongoing research projects, held a 1st annual 5K Fundraiser and a 1st annual Scientific Conference. The board of directors have found a way to get many of the leading geneticists excited about researching this rare disease. The Foundation has brought SO MUCH HOPE to our family and undoubtably many others.
The CACNA1A Foundation has provided valuable information to help me advocate for my daughter. It also provides valuable information to help her care team make decisions for her care.
Our journey as parents of a special needs child has been filled with challenges, but thanks to the incredible support of the CACNA1A Foundation, we've never felt alone. They’ve provided us with invaluable resources, guidance, and emotional support, which helps us provide best possible care for our son.
We are glad to have them on our side.
I am proud to support the CACNA1A Foundation as a donor. I first learned about this incredible organization at the end of last year. While I’m not a parent of a child with a rare brain disease, I was immediately drawn to the dedicated leaders of this organization and moved by their mission to accelerate the development of treatment options for children with CACNA1A-related disorders.
Seeing the passion and drive of the CACNA1A Foundation and its community has only strengthened my commitment to supporting their vital work. I am proud to be a part of this journey towards a brighter future for all affected by CACNA1A-related disorders.
The Cacna1a Foundation has been a tremendous support to my family. From providing critical resources to help us navigate our diagnosis, or connecting us with doctors, they are invaluable to our community. They are willing to help us however they can, and they truly care.
When we got our diagnosis, they reached out to me immediately with a video chat to help make sense of her diagnosis. They even directed me to a cacna1a specialist near me. Anytime I have a question, the cacna1a foundation has resources to find answers.
I am honored to be part of the CACNA1A Foundation’s staff. Joining a few months ago as the organization’s first-ever Development Director, I was immediately struck by the deep belief this parent-led organization has in its mission to accelerate the development of treatment options for children with CACNA1A-related disorders.
At this year’s Creating Connections Community Conference, I had the privilege of meeting many family members within the CACNA1A community. Despite the everyday struggles brought on by a rare brain disease that currently lacks targeted treatments or a cure, these children, parents, grandparents, and caregivers are truly remarkable. They are warm, caring, resilient, and hopeful for a future free from the debilitating effects of CACNA1A-related disorders.
It's a great nonprofit organisation with a lot of positive impact towards the identification of a cure for CACNA1A, focusing on building a solid network of doctors, researchers, patients and caregivers treating all with respect. The leaders are empathetic and trustworthy pushing for a awareness and treatment sooner than later.
This foundation has supported families so well and drives research to help those who suffer from CACNA1A-related disorders. Thank you from the bottom of our hearts to the founders and parents leading this life-changing foundation.
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Due to the lack of research on this disease, the CACNA1A Foundation has been there for us in ways the medical community could not be. They have provided the information and support we needed. They constantly are keeping us updated via social media and monthly newsletters with progress in research and newly diagnosed families. Thank you to everyone involved in this foundation for changing CACNA1A lives around the world.
I came across the CACNA1A foundation from a mutual friend and my eyes were opened. As a family medicine physician, even I was unaware of this rare condition. I was asked to participate in a walk/fundraiser by a friend and was immediately impressed by their cause and drive. I quickly learned about the condition, the foundation and the goal of more research and awareness of this condition. Meeting a beautiful young girl who has CACNA1A, where her and her family embrace it and work with it on a daily basis, showed me how important the research and development of treatment options are. I was completely impressed by the CACNA1A foundation and plan to support it year after year in hopes of advancing treatment options and awareness for these individuals.
While I donate to many important organizations, the CACNA1A Foundation holds a special place in my heart. Having a loved one with this disease, I know that if a cure is going to.be found, the CACNA1A Foundation will be a part of it. Their mission is to develop a collaborative research network and they have done just that. Scientists are working together and trying to find new treatments because of their work. I am so grateful for this hard-working team.
The CACNA1A Foundation has been an invaluable resource to families in our community. Thank you for all that you to push science forward for us.
The CACNA1A Foundation’s commitment to finding a cure and improving the lives of those affected by CACNA1A related disorders is truly remarkable. The team is driving meaningful change in the field.
I am a proud donor and board member of the CACNA1A Foundation. The tireless dedication of the team and our impactful results to date make me proud to be associated with this organization.
Well organized organization that can serve as an information catalyst for CACNA1A community as well as forward thinking by including the science/research community towards a cure!
CACANA1A Foundation is doing great work at all levels towards finding a cure for CACNA1A related rare diseases.
Whilst rare diseases by default are 'rare', with over 6000 rare diseases, collectively across the world about 1 in 20 people will have a rare disease i.e. most people reading this will likely know someone or a family member with rare disease.
CACNA1A Foundation's work is building the infrastructure & science to address their own community's needs, but in doing so will be furthering all rare disease research & cures.
This charity is important to one of my closest friends. She has shared her journey that I could only imagine living. The progress that this nonprofit has made in just the past 10 years is extraordinary! It’s exciting and gives us all hope for those living with CACNA1A. I can’t help but want to be a part of it.
As the parent of a child with a CACNA1A variant, the resources that the CACNA1A Foundation are invaluable to me. If I have a question, I can reach out and the leadership will do their very best to find the answer. They are tirelessly advocating on behalf of all our kids and I am hopeful a treatment will be available soon. Thank you for all you do, CACNA1A Foundation!
My son was diagnosed with a rare genetic disorder in early 2019. With very little information available about the disorder, we found our way to a Facebook group of other families with the disorder. Little did we know, one year later, that a group of mothers in the group took it upon themselves to start a journey to not only benefit their own families, but all families of people with variants on their CACNA1A genes.
They had founded the CACNA1A Foundation.
Since its inception, the foundation has surpassed the limits of what I thought an organization could accomplish. In the midst of a global pandemic, the amazing board members pulled families, clinicians, and researchers together for a virtual conference sharing information and broadening the understanding of CACNA1A-related disorders. Their fundraising efforts awarded grants toward CACNA1A-related research. Their information efforts spawned a website that provides a centralized repository of CACNA1A-related information, something that wasn't even piecemeal before their effort; there were merely a few research papers available with references to the gene.
They've continued to be laser-focused, hosting regular research roundtables, hosting an in-person conference connecting families and researchers, gathering necessary data (like the Natural History Study), continuing to raise funds to support research, and I can't even imagine what else.
Thanks to the CACNA1A Foundation, a disorder that was barely understood in February 2019 now, in October 2022, has high potential for both treatments and a cure. Those newly diagnosed now have a plethora of data available after diagnosis to provide answers and maybe even, a glimpse of hope.
Avery, we his parents, and Avery's Avengers (https://www.facebook.com/AverysAvengersCacna1a) thank the Foundation from the bottom of our hearts for everything they've done and continue to do.
This foundation has truly given our family the answers we were desperate for! We felt so alone and scared after our 2 year old daughters CACNA1A diagnosis, and it wasn’t until I found their website and got an immediate response from them that we had peace knowing we weren’t alone. We will
do everything we can to continue supporting this foundation in hopes for their ultimate goal, treatment and a cure for CACNA1A!
I have had the distinct privilege of working closely with the Cacna1a Foundation over the last 2 years. It is absolutely amazing how they hit the ground running and built the community from the ground up.
The founders and Board consist of a few of the most passionate and highly driven people I have ever known. They are leaders within their patient community supporting families through diagnosis and treatment and encouraging participation in research.
Not only do they work day and night to move their mission forward but also to collaborate within the rare disease community building collaborations and raising the bar for excellence wherever they go.
The board members of the CACNA1A Foundation are working hard to not just raise funds for life-changing research but they truly try to go above and beyond to support families in need. The family conference this year was an incredible experience and I highly recommend you attend the next event in 2 years. There's nothing like connecting with your tribe!
Our grandson has been diagnosed with a CACNA1A variant. Initially, not knowing anything about this disease, we found the Foundation's website very helpful and instructional. We are so happy there is an organization that is working towards finding treatment options for CACNA1A children.
Our family has several people with cacna1a and we’re extremely excited about the work the foundation is doing in this area.
My granddaughter has CACNA1A and her mother has learned so much from the foundation, including meeting parents of other children with CACNA1A. She has been able to share information about CACNA1A with her physicians and family members. The foundation has brought families, physicians, and scientists together to find a cure for CACNA1A. We are so grateful for their leadership in this work.
My granddaughter has CACNA1A and I attended their conference to learn more about CACNA1. They had the perfect balance of doctors who work with CACNA1A patients and scientists who are researching the disorder. It was extremely informative and will help me as I assist in caring for my granddaughter.
When my son was diagnosed with a CACNA1A-related disorder, the foundation provided the support and resources that our family needed. When I was given the opportunity to join the CACNA1A Foundation team, I didn't hesitate. It is an honor to work alongside the strong women and moms who lead the foundation in advancing the knowledge and awareness of this rare disease and driving the research forward to find much needed treatments for all who are living with a CACNA1A-related disorder!
It is incredible what the Cacna1a foundation has been able to do in terms of outreach, fundraising, and awareness in such a short period of time. I am so proud to be able to support such a wonderful group of kids and families, and look forward to continuing opportunities to do so.
This foundation is doing amazing things. The amount of funding they have already been able to give the research community is tremendous. That with the medical advisors they have assembled really gives hope.
This organization has done so much to help a dear family friend learn, grow, and connect with others who have Cacna1a. It has been a liberating and supportive effort to learn what is really going on with their bodies, as they fight for funding for additional research. I will continue to support this organization and applaud their efforts!
It has been so exciting to watch this foundation grow! I know several friends who are a part of it. I can't wait to see what's next!
I have CACNA1A variation and because of the CACNA1A Foundation, this year, I met others with CACNA1A disorders for the first time this year. It was amazing! I am so grateful for this organization.
The CACNA1A Foundation has done an incredible job raising awareness about CACNA1A and its variants. The board members are working tirelessly to bring families, scientists, and researchers together to collaborate and communicate. Since the foundation's beginning, I have learned more about CACNA1A than I ever was able to discover on my own. Thank you to the foundation for all you do! I look forward to seeing what comes next!
Cacna1a has done an incredible job fundraising, advocating and promoting research around the Cacna1a variant. The leadership team is extremely dedicated and professional. I feel lucky to have been able to attend Cacna1a hosted fundraising events!
What I have witnessed in the last year has been nothing short of amazing. The moms behind the CACNA1A Foundation have, despite having no background in the field of medicine, created an advocacy organization that has sat down at the table with heads of multiple pharmaceutical companies. They have put together a scientific and medical advisory board consisting of some of the top researchers and clinicians with an interest in this disease. They have raised money to support research that is substantive and critical to learning how to treat this disease. They have created that bridge from advocacy group to action group that is necessary to generate treatment options for any rare disease or condition.
I'm honored to be a member of the CACNA1A Foundation's Board of Directors because I believe deeply in the promise of the Foundation's mission to accelerate the development of treatment options for CACNA1A children, and I share the sense of urgency that drives the Foundation's work.
The CACNA1A Foundation has worked tirelessly and with a sense of urgency to raise money for research. In just 3 months they've accomplished a great deal and I'm very proud to be affiliated with this organization. The desire to find treatments specifically for their community guides their work and I believe they will accomplish this goal!
As a parent of a child with a cacna1a variant, we are thrilled there is finally a foundation to advocate for more research. We are filled with great hope that a treatment option will be available in our daughters lifetime as a result of the cacna1a foundations efforts. #curecacna1a
I am so impressed with the professionalism and efficiency of this foundation. They have done an amazing job in such a short period of time to create awareness and raise funds for such a special need! I look forward to continuing the support.
I am honored to be a part of an organization focused on improving the lives of those with CACNA1A variants and their families. I have witnessed these folks work tirelessly to raise awareness and further the mission of accelerating research!
I am very impressed with the work your foundation has done in such a short time . You have gotten your first grant and launched a scientific advisory board amongst other things. Keep up the great work.
Since learning of this non-profit, I have been amazed at how fast they hope to move from diagnosis to treatment. Equally amazing are the impressive professionals that have all come aboard. This group is about to accomplish great things!!!!
I am so honored to serve on the Board of this organization, proud of the work we have done so far (including assembling a 5-member board, becoming a NORD member, assembling our Scientific Advisory Board, and launching our first seed grant, all in less than 6 months!). The founders are determined to accomplish big things and work tirelessly to do so. I am honored and humbled to have been asked to join this in this endeavor and I am very optimistic about all that we will accomplish for those with CACNA1A variations, like my daughter.
After 10 years of not knowing what caused our oldest daughter’s movement disorder, our family finally received a diagnosis late last year. We learned she had a variation of the CACNA1A gene, something that science couldn't have even detected many years ago when we first started searching for answers. However, because this genetic difference is so rare, this "answer" left us with a lot questions. Fortunately, we found the CACNA1A Foundation! We feel lucky to have found the CACNA1A Foundation, which has provided our family with critical emotional and social support, as well as access to the latest research and scientific developments. They lift up our daughter and other kiddos like her and we are filled with such hope now that we have found our community, with the foundation leading the way.