FamilieSCN2A is an amazing organization filled with passionate staff and volunteers. They combine relentless pursuit of a cure with dedication to the (often young) members with SCN2A, supporting them in each inchstone they accomplish. It's truly remarkable to see such a vibrant community come together to redefine what is possible while pursuing a cure.
FamileSCN2A is an organization that I watched being built from the ground up. I’m so impressed by how much has been accomplished. I want to see a treatment discovered so I support financially via a roundup program from my every day purchases. I also support the organization’s local fundraising events. This is personal to me because I love Ben Myers. I want to see Ben have a long and healthy life full of love.
When my son was born and shortly after diagnosed with SCN2A, his NICU nurse told me about this organization. They have provided me and my family with a sense of solidarity, information, community, and love. They provide all sorts of resources for families and work hard to get multidisciplinary clinics set up. Amazing people!
When our son was diagnosed with SCN2A we felt lost and alone. Being told it is an ultra rare disease is isolating. But when we found the FamilieSCN2A foundation we felt like we found a community.
We are so grateful for the work the foundation is doing to find a cure and continuing to foster a community of support and love.
FamilieSCN2A has convened an active community of families, medical doctors, researchers, and lead scientists to fulfill its mission of finding a treatment or cure for SCN2A related disorders. The organization has convened, united, and collaborated with other SCN2A organizations worldwide and has shared knowledge, experience, and resources with related advocacy groups, putting FamilieSCN2A at the forefront of a powerful movement to get treatments for rare diseases to be made more quickly and with more efficiency than ever before. With its values of integrity, urgency, collaboration, and inclusion while putting families at the heart and soul of everything it does, FamilieSCN2A Foundation is poised to make a significant impact on the lives of children with autism, epilepsy, and developmental delay. Join us and donate now to be part of a powerful movement, and critical moment in the history for rare disease.
My husband and I are high school sweethearts and welcomed our first baby in April of 2023. By the end of the year, we knew our son, Calvin, was developing atypically and needed interventions. It wasn’t until our second round of genetic testing after his first birthday that we discovered Calvin has a genetic mutation in the SCN2A gene, leading to a neurodevelopmental disorder, and eventually leading to mutliple hospital stays and his epilepsy diagnosis.
Immediately after learning of Calvin’s SCN2A diagnosis, we did research and found the FamilieSCN2A Foundation. What first felt like an isolating diagnosis became an opportunity to connect with a unique community advocating for people living with SRDs. It is so difficult to connect with other moms and families in my day-to-day life, people that truly understand our struggle, and through the Facebook group especially, I have been able to ask questions and find support from others.
I have never known an organization to have such a strong leadership foundation that is willing to advocate for every single family coping with this disease. Both the Executive Director, Leah Myers, and Program Director, Amanda Gale, have personally helped our family through crisis. Everything the FamilieSCN2A Foundation offers, from Town Halls with invaluable information, Warrior Wednesdays, to the yearly SCN2A conference, every member of the foundation works hard so that no one feels alone.
What an amazing supportive group of individuals to encounter, especially when you’re experiencing one of the scariest changes in your life. They have brought families together, created significant hope, and have supported us through many highs and lows of living with a warrior diagnosed with SCN2A. It is truly a blessing to have the FamilieSCN2A foundation along our journey
When our daughter was diagnosed with SCN2A, there was little information available and no clear path forward. At the time, the FamilieSCN2A Foundation was just forming, and it gave us so much hope! It brought together families like ours who were desperate for answers and connection. Since then the foundation has grown into a true powerhouse for advocacy, research, and family support. Over the years, it has connected us with other parents, provided critical resources, and pushed tirelessly for treatments and a cure. What started as a lifeline has become a global community—and we are so grateful for everything this foundation continues to do for families like ours.
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My daughter battled relentless seizures starting in 2008. My husband and I doggedly pursed a diagnosis, visiting specialist after specialist at many different hospitals never finding an answer. At age 9, after whole genome sequencing, my daughter received an Scn2a diagnosis. We were told she was the only one. We were given no information on Scn2a, no treatment options, no hope for the future. It was absolutely devastating. A year later, the now Executive Director and Co Founder saw that I shared my daughter had Scn2a in a rare epilepsy group. She reached out and shared that she was forming the Scn2a Foundation. Since the start of the foundation I have been an active volunteer, guest speaker, fundraiser, and advocate. My family has received incredible support from this foundation and community. To see how the Scn2a Foundation has grown since it began is absolutely phenomenal. The Scn2a Foundation’s research focus on finding treatments and a cure for Scn2a is a powerful thing for families in the epilepsy community.
The Families SCN2A Foundation is an impressive and important part of the research community and the families who love and care for our SCN2A Warriors. The Families SCN2A Foundation provides families with educational opportunities and a compassionate place to be with those who understand the joys and struggles of embracing an SCN2A Warrior.
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The FamiliesSCN2A Foundation is an organization working toward a common goal- finding a cure for the SCN2A warriors. Their vision is being brought to fruition through world renowned scientists and innovators. But perhaps an even greater contribution brought forward through the FamiliesSCN2A Foundation is the gift of community. The SCN2A families and warriors are supported, loved, educated, and celebrated in each aspect of their life journey.
Getting our daughters SCN2A diagnosis at just 1 years old led us to the scn2a foundation and it's been a godsend for us. We got to get connected with families just like ours. We share our struggles and achievements. We share our good times and bad times. We've gotten to network with so many families and share experiences & listen to other's experiences. We learn new things & support each other like no one else could. The foundation has truly made us all one family. We got to attend our very first scn2a conference last year and it was amazing. I am so thankful for this group/foundation. Because of the scn2a families foundation our lives are better.
The FamilieSCN2A Foundation was the first drop of air in a life of my family. Although we don't live in the USA, the Foundation is the great support to us. When our son was diagnosed with SCN2A gene mutation, we were desperate and felt very rare. I found their group on social media. After that I realized that we are not alone in our hard life journey. The conferences they organize are the powerful source of information, knowledge and support.
I know the family Foundation for about four years now and they and their way to support families is great. When we first got the diagnose of our son the family Foundation was the only resource about SCN2A and they took me in like a family. It help so much with everything that came after the diagnose. They are just great.
Our child was perfectly healthy and happy and her future was bright and full of possibility, or so we thought...until one day she suddenly started having seizures out of the blue. We were told they were called infantile spasms and learned the prognosis is poor. A few weeks later (and after she had dramatically regressed from walking and laughing to laying and staring), genetic testing came back indicating that she has a mutation of her SCN2A gene. Our doctors hadn't had much personal experience with SCN2A related conditions as they're so rare, but told us there is a foundation that can help us. We found the FamilieSCN2A Foundation and it has felt like a lifeboat. It rescued us as we were drifting away from the shores of the life and future we'd envisioned and toward a sea surrounded by scary unknowns. With the FamilieSCN2A Foundation we have gone from overwhelmed and isolated to hopeful and cautiously optimistic. We have been introduced to others in the exact same boat. We have been educated and directed to studies that we can share with our child's doctors, to help them better understand this rare condition. We've learned that the FamilieSCN2A Foundation is working hard to raise awareness and drive research in the quest for a cure (which is a great comfort). And we are learning by the precious examples shared by others in the community that even if life does not end up looking the way we had originally envisioned it, it can still be beautiful and full of joy and love for our child. I can't say enough how much of a positive difference this foundation is making, and how grateful I am for all it does.
My daughter is a nurse for an SCN2A super hero who has changed our lives. I have been volunteering for the organization for years and can see first hand the things they do to not only work to find a cure but help family's who are in desperate need of support. This support can come in so many ways from questions about care, to a shoulder to cry on! They are so family oriented that at their annual conference they have a program for the siblings so they get to spent time with other kids that have a brother or sister like their own! I am proud to volunteer for such a classy well run non-profit.
FamilieSCN2A Foundation has given me so much peace of mind. It connected my family with so many others that understood what we were going through with my daughter’s diagnosis. It gives us hope.
FamilieSCN2A Foundation is the rare advocacy gem that excels at both comprehensive family support and groundbreaking research initiatives. With strong leadership and a laser-focused mission, the foundation is able to confidently forge ahead with ambitious goals. They set the gold standard for how patient advocacy groups can maximize resources without cutting corners on quality outcomes.
This foundation has made our life and the life of our SCN2A warrior so much better. They are truly amazing and inspiring. We are so grateful for all the hard work!!
I am both a parent of an SCN2A child and a physician who is on the FamilieSCN2A M/SAB. This organization is making an astounding impact on both the lives of the SCN2A patients and on scientific research, helping to coordinate and advance research on future therapies. I have found SCN2A to be an incredible warm community, with well-organized, incredibly knowledgeable and dedicated leadership.
SCN2A is very important and in touch with each family. Upon initial diagnosis almost twenty years ago there was nothing. FamiliesSCN2A supports research that is critical and is directly in touch with families living at their home and there for them when there is a hospitalization. The support the foundation gives families living each unique life through research and support does not go unnoticed. Too often families also need support at the end of life. Families SCN2A meets that need by continuing to support the family after the death. The work of the foundation for research is critical and support while caring for a loved one living is important. I’m grateful to the foundation for their support and continual hard work. I know I can always call on the foundation for support!
FamilieSCN2A is an amazing non-profit patient advocacy and research organization. FamilieSCN2A is very community focused, research driven, and is a great asset to the SCN2A community.
FamilieSCN2A is an incredible organization. They support families, and translate the family’s experience to the research community, using these truths to drive treatments for their kiddos. Most importantly, empowering families to advocate the best care for their children
This is a wonderful and vibrant organization, filled with dedicated and passionate people focused on a crucial mission.
Amazing people working for the greater good to improve the lives of everyone affected by SCN2A disorders.
This foundation was started by families, serves families, and is led by families. It is committed to supporting treatments and cures for the life-threatening and life-altering disorders related to mutations of the SCN2A gene. I know my money and my volunteered consulting services make an immediate and direct difference in the lives of SCN2A patients and their loved ones globally. The foundation partners with leading scientists, researchers, medical practitioners, government agencies, and industry pioneers to harness their collective power to change the world. Donate today. Significantly, meaningfully, and irrevocably change a life.
The FamilieSCN2A Foundation is an incredible nonprofit built by urgency for a cure, community, and integrity. You will not find another organization more inclusive and mission driven!
FamileSCN2A has been a continual lifeline for our family since our son’s diagnosis in 2015. Their support, expertise and connection to providers and researchers has been our family’s beacon of hope!
My son Jax has SCN2a, which causes him to have uncontrolled seizures. When he was just one years old, I struggled to find a group of people that felt like we did. When he was six, we discovered he had the mutation and immediately looked online to see if we could connect with anyone, I found a Facebook page and joined it 11 years ago. The people in this group are like family to us, and we could not do it without them. It has connected us to people all around the globe. We love the foundation and everything it has to offer.
FamilieSCN2A is an amazing organization filled with passionate staff and volunteers. They combine relentless pursuit of a cure with dedication to the (often young) members with SCN2A, supporting them in each inchstone they accomplish. It's truly remarkable to see such a vibrant community come together to redefine what is possible while pursuing a cure.
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I first heard of FamileSCN2A through my nephew (who has SCN2A) and my sister and brother in law. It's been incredible to watch this foundation grow from just a few families reaching out to each other into an organization that accomplishes so much - not just in terms of helping and supporting families affected, but really digging into the science behind this gene mutation, how it affects those who have it, and what can be done to treat and mitigate the side effects. I have so much respect for the amazing people who run, volunteer at, and contribute to this foundation - there is so much love and dedication to ensuring that the children with SCN2A stay healthy, minimize seizures, and grow up to be all they can be. I can't say enough good things about the FamilieSCN2A foundation!
FamileSCN2A is a fantastic resource and the first place I send families with a new diagnosis. I also encourage my trainees just learning about SCN2A-Related Disorders to utilize the Foundation’s website for learning as this helps them to better serve our patients. I am grateful for all the Foundation does!
Professional foundation that focuses on community support and research for all SCN2A-related disorders. Glad to see the progress they have made in the last 9 years.
As a sister organization to FamilieSCN2A, the Intentional SCN8A Alliance has been thrilled with the collaborative nature of the team and how their vision to cure SCN2A includes working with partners to advance our missions together.
The FamilieSCN2A Foundation has been an amazing resource and inspiration for families with an SCN2A child. The diagnosis and complexity of raising an SCN2A child is difficult, especially because information on the disease was hard to find. FamilieSCN2A has changed that -- sharing information, help, community and helping catalyze the research that will truly make progress against this disease. The passion of the whole foundation is a real inspiration.
One real milestone for me personally was going to the Families Conference last year and meeting another SCN2A child with symptoms just like my son. SCN2A is a rare disease -- I'd never met another kid like my son Teddy. Just knowing that there are others on this journey really created an enormously valuable feeling that we are not alone.
My grandson, Ben, has an SCN2A mutation. He has seizures, autism and intellectual disability due to this condition. We have benefited immensely from the FamilieSCN2A Foundation which provides us with support, knowledge and hope for a better future with new treatments and a cure! I attended the Boston conference this year and was overwhelmed with feelings of hope and support!
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This foundation has provided a wealth of information and advice for the care and well-being of my 10-year-old grandson. We have greatly benefited from the personal experiences of so many caring families and professionals who make up this group. It means so much to know we are not going through this alone!
The FamilieSCN2A Foundation is more than just a nonprofit. It is a community built on urgency, community, and integrity. The vision is clear to have a world with effective treatments and cures for all SCN2A-related disorders. And our community is doing that every day from all the collaborations they have established. You will not find another organization more passionate than the SRD community.
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FamilieSCN2A Foundation is an amazing organization that focuses on the SCN2A community and SCN2A research. The programs and events are always professional and thoughfully put together. I am proud to be a part of this community.
The FamilieSCN2a foundation has opened my eyes to a whole new perspective on my job and life. As a nurse, caring for my patients is my passion. But meeting the Myers family, being introduced to the foundation, and fully investing my job with Ben has been the greatest joy. The foundation is advocating for the voiceless and working together to find a cure. Together they changing and saving lives! I’m so grateful to be a part of it!
This organization works tirelessly to create community and support for those affected by SRD and their caregivers. As a mom to a boy with SRD, I don’t know what I would have done with The FamilieSCN2A Foundation.
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This organization has changed my family’s life. They have supported us through the most difficult journey since we became aware of our son’s condition and they keep educating people on SCN2A related disorders and cultivating community.
The foundation is always trying to maximize efforts to raise funds for their programs and most importantly to fun research that can lead to a cure or treatments for our children which is our only hope. would be lost without them.
FamilieSCN2A is such a great organization. The founders, board members, scientists, volunteers associated with this org and not to forget various families are fully dedicated towards advocating, spreading the knowledge, fund raising and striving hard to find answers for this rare genetic disorder. So glad I found this group on FB. We learn so much from various social interactions including the regular family conference get together. The conferences are managed professionally, and I can vouch that everyone who attends definitely learns something new. If you are thinking of which charities to donate please think no longer and donate to this foundation, your $s will not go wasted, because a majority of the donations go towards funding the active research going on in this area.
Finding the FamilieSCN2A Foundation back in 2014 when our daughter Charlotte had been born and diagnosed with SCN2A was a lifeline for us. For the first time in months we didn’t feel so alone in the world with an incredibly sick daughter that no one knew how to help. Over the years I have been apart of this community I have watched it grow exponentially. While I am sad that others have received this diagnosis for their child, I am thankful that the community has grown to what it has for the families because of the amount of resources it has for them now. Though my daughter passed away from complications of SCN2A in 2016, I am still filled with hope because of the drive to push forward the leaders have. I know how hard the are working to improve the quality of life for all children affected, and they never lose site of the overarching goal - to find a cure. I am thankful to still have close friends and families active in the community, because our lives have been forever changed by Charlotte’s diagnosis, life, and death. This foundation will always have a huge part of my heart and soul.
Amazing non-profit helping those diagnosed with the SCN2A gene disorder. The support and love from the Foundation’s members and clinical partners is unparalleled.
The FamilieSCN2A Foundation has helped educate, empower, and support our family during an incredibly challenging time.
Immediately following our daughter’ SCN2A diagnosis it was very challenging to find expertise on the condition until discovering the foundation. Since that time we have learned so much and have been exposed to both a wonderful community that learns from their shared experiences, and a strong scientific and medical community that are leading the charge to a better future for our children.
Now as a board member, I have visibility to all of the foundation’s efforts, it is awe inspiring and very motivating. While the day to day as an SCN2A parent remains challenging the foundation both provides a sense of community and hope for the future.
Leah and the entire FamilieSCN2A team are incredible patient advocates for the SCN2A community. Their passion, drive and relentlessness are infused into everything they do and their work will improve the lives of families living with this devastating disease.
FamilieSCN2a go above and beyond for the SCN2a Community through their advocacy, education community outreach and research efforts. Their continued support to families like ours is nothing short of inspirational and we feel very lucky to walk this journey alongside some incredible people who not only just "get it" but are working tirelessly in search of a better tomorrow for our children.
The FamilieSCN2A Foundation is a well-run organization and a great model for other rare disease non -profits to follow. As President of GRIN2B Foundation, I have continuously looked to Leah and her team for guidance. They are collaborative, transparent and, most importantly, extraordinary dedicated to supporting the SCN2A community in any way possible. -Liz Marfia-Ash, President and Founder of GRIN2B Foundation
Great teams are hard to find. We live the impact this organization has had in our daughters life.
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We’ve been active for nearly four years now observing, donating, and eventually volunteering in the community. The community and leadership are hard to match, and we’ve found great comfort in the advice and network of providers they share. The families and professionals conference is a great resource that does effective advocacy to academics and pharma alike.
FamilieSCN2A continues to serve the community while driving meaningful change forward for individuals diagnosed with a SCN2A mutation. I’m in awe of the empowerment in all areas they give families through education, whether is in school or support resources, understanding their loved ones condition, and the ever complex healthcare system. All the while in sync bringing together and driving innovation research to find multiple avenues for treatments.
SCN2A Foundation is an amazing organization providing research, hope, community and is focused on finding a cure! They provide so many resources and support.
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I connected with this organization several years ago when a dear friends son had SCN2A and she introduced me to other families since our daughter also had a rare genetic disorder. This is an amazing foundation that goes above and beyond to fundraise to find a cure, research, engage the community, provide grants and resources, while spreading awareness and providing support! I was able to volunteer at their walk and have donated to this special group. They are a wonderful nonprofit!!
The work that the Foundation has accomplished is beyond amazing. Our team consists of the most highly driven and passionate humans on earth that live our Mission, Vision and Values every single day. This past summer at the conference, the love and support from the Foundation and the entire community that they touch oozed into each and every detail over the 3 days. Simply remarkable what a group of people can do when they unite and stand up to speak in the same voice!
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This Foundation was built from the ground up by parents of children affected by an SCN2A related disorder. We each live the values of the Foundation every single day.
FamiliesSCN2A Foundation is an amazing nonprofit striving to find treatments and a cure for those living with SCN2A. This Foundation works to improve the lives of those living with SCN2A through conducting research, raising public awareness, offering support to families and being involved in advocacy. I’ve seen first-hand through my nephew how SCN2A affects the lives of those living with this disorder and those who love them. FamiliesSCN2A Foundation is truly making a difference and an impact- through the research, fundraising and support provided to the SCN2A community.
The FamilieSCN2A Foundation has been a vital source of support and education for our family and is doing important fundraising work to further advancements in scientific research towards treatments and a cure. We are so grateful for the community and hope they provide.
This organization provides vital support and education to families of children with SCN2A. The dedication of Foundation team members is beyond compare. As a friend of a family that both provides and receives support from this group, I cannot recommend the FamilieSCN2A Foundation highly enough.
The FamiliesSCN2A foundation is run by a group of extremely dedicated individuals, many of whom have had first hand experience with a family member who has SCNA2A. The foundation not only sponsors critical research but also serves as a support group for families who have a loved one with SCN2A.
FamiliesSCN2A is a tremendous organization. They are working hard and in a rigorous way to accelerate therapy development, and also to support SCN2A patients and their families. When we were starting our foundation for STXBP1, we looked to FamiliesSCN2A for inspiration and guidance.
We are so thankful for the SCN2A Foundation as a research and educational outlet, as well as support for the closest of friends with a son who has SCN2A.
Thank you for all you do!
The FamilieSCN2A Foundation is a superb example of a grassroots effort begun by a few dedicated parents and that has grown into a formidable force in the medical-scientific community in North American and around the world. The Foundation has established a scientific-medical community focused on finding cures and solutions for children affected by SCN2A-associated disease and on helping families cope with the day-to-day and year-to-year issues that are so critical in this community. This foundation is purpose-driven and effective. The Action Potential grant program had funded several young investigators whose research is making important contributions to our knowledge of several aspects of SCN2A-associated disorders. The Scientific meetings they hold are superb. The resources and support that they bring to the families of affected children are exemplary.
FamilieSCN2A Foundation is an incredible organization that supports each and every single one of its members in a unique way. The board goes above and beyond to ensure that they are constantly advocating for our children and creating new paths to both build hope for better future, and to provide a support network for its families to lean on. We would have been lost in the dark if we hadn't found our SCN2A family through this foundation!
FamilieSCN2A is a great organization that helps families worldwide who have kids/adults with this rare genetic mutation. It has an awesome Facebook page with hundreds of members who welcome new families with love, advice and attention, but mostly with incredibly experienced and supportive fellow parents who are on the same journey. Most importantly, the foundation and its supporters raise funds for research to find medicines to treat and someday cure this rare and usually debilitating disease. Great organization that deserves our support. Thank you!
This organization proves again and again through tireless effort that it just won't stop fighting for these children! I'm proud to know a member in good standing, and I'm proud to know a child with SCN2A.
When my son was first diagnosed with SCN2A there was NOWHERE to turn. Our well-connected neurologist didn't even know anyone else who had it. A couple of years later, thanks to social media, we found others with the same disorder who were starting The FamilieSCN2A Foundation. Six years later, the Foundation has been responsible for bringing together hundreds of affected families. Now there is a place to go for information, education and support. Most importantly, because of this Foundation, the scientific research community was activated to study SCN2A and has discovered so much about the function of the gene and they are getting closer to developing better treatments and cures. It is a long and expensive process but the Foundation ensures that patient voices are heard along the way.
The FamilieSCN2A foundation has been the foundation for so many families.
They have brought awareness and knowledge for this disease and continue to be a leader in doing so.
If you know anyone that is suffering from this disease please put them in touch.
Such a wonderful group of dedicated and result driven families. The love and support is nothing short of amazing.
Very responsive and doing great work for the entire SCn2A community. They are also incredibly collaborative and transparent.
An organization founded by families, supporting one another, while working hard to find a cure, is truly a beautiful thing. The integrity of the leaders to ensure donations are used to directly support the community and research is like nothing I have every been apart of.
I learned of this foundation through attending a conference and met Leah Myers who has been an amazing resource and now friend. Although our children's syndromes differ slightly, most of our needs for our children and the daily journey we go through are the same, the invaluable information and knowledge I have gained has been tremendous through their support. This foundation goes above and beyond to support their Families.
I have known my little warrior since he was born. I watched him go from a curious, engaging infant to a toddler suffering from hundreds of seizures a day. His mom, someone I have known for almost 20 years, has been to the ends of the earth and back to advocate for her little man. The love I have for this family and this organization is immeasurable and the best way I know how to give back is to volunteer and donate. Change started with one person's vision of a better life for her child and has grown into an army of champions; working toward a lifetime of better tomorrows for them and their families.
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I have been on the sidelines of this organization since it’s inception. I donate when I can and volunteer at locally held events. The people that run this organization have one ultimate mission in mind: a cure. The remainder of the mission: help all those affected stay safe and healthy until that cure materializes. So much progress has been made yet so much more is needed and they fight just as hard as they ever did. FamilieSCN2A is moving mountains.
Since our son’s diagnosis almost 4 years ago, this community has embraced our family. They have offered love, encouragement, support and an understanding others cannot provide. This foundation gives our family hope for our son’s future. We are truly grateful for what this foundation does for each and every SCN2A warrior.
I am honored to serve on the BOD and join a team of fearless, determined, hard working leaders who all share the same goal that is to find a cure for SCN2A. Our foundation’s mission and vision is clear and we are relentlessly fighting alongside our community, in conjunction with the science community to reach our goals. Personally, the foundation is my family. The community is always there when needed or not. We find comfort in knowing we are not alone!
I absolutely love this organization, all the work they do, and everything they stand for. The devotion of the parents that run the FamilieSCN2A Foundation is above and beyond. The way they’ve created a network for parents to be able to give and receive support while keeping an open dialogue about what they experience with their children is beautiful to see. I’m so thankful this organization was founded and that steps are being made towards finding a cure.
This is an incredible foundation, not just for people who are affected by SCN2A but for all children with rare epilepsy and autism. They are leaders in patient centered nonprofit management. They work tirelessly in multiple areas to provide support and advance research. I am very proud to be affiliated with them!
Almost 4 years ago my grandson was born having seizures and diagnosed with SCN2A. His parents were told about the Familiescn2a foundation and reached out to them as I did also.
Amazing group of parents who all have a child with SCN2A fight everyday for our kiddos to find a cure. The knowledge and leadership in the foundation is priceless. We thank you !
The knowledge of the leadership in The Families SCN2A Foundation is top notch. Go-getters with great attitudes and a responsibility for advocating and procuring the best services, policies and procedures for our youth.
The FamiliesSCN2A Foundation has, in a brief five years, given hope to families who previously felt none. They have provided a network of support from those "in the trenches" and from certain smart science minded people interested in finding help and a cure. Thank you FamiliesSCN2A for widening our island and demonstrating we are not alone. Forever grateful.
FamilieSCN2a is an organization that is professionally operated by families of individuals living with a genetic condition, SCN2a. The foundation works diligently to raise funding for quality research to not only help improve quality of life for individuals impacted by the condition but to also some day find a cure. The foundation raises funding for families needing expensive equipment, providing respite, and also offering economic support to families negatively impacted by COVID-19. Most importantly, FamilieSCN2a lives up to it's name, as it is run by families, offers a support system for families, and works with a family of doctors. The foundation is truly a life changing a light in the face of the challenges dealt with everyday. It is support, it is hope, and it is the pathway to a better life for those impacted with this condition.
When our daughter was diagnosed with a SCN2A mutation we were immediately able to connect with other families through this Foundation. Right from the beginning of our journey we have been fortunate to have this amazing support network. The FamiliesSCN2A Foundation is a creative nonprofit always finding new ways to help families in little ways (like small grants to cover the expense of traveling to meet other families and doing something fun together) and big ways (like advancing research).
My family has been active with this foundation for a few years, and we are thrilled by the year to year growth. The leadership is comprised of mostly SCN2A parents who decided to get organized and not only cure SCN2A, but also play a major role in supporting the community. As growth continues, one of our favorite things about the foundation is the respect and relationships formed in the research community. The foundation relies heavily on the advice and counsel of experts in order to make key decisions in research. The strength of these partnerships is a testament to the character and professionalism of the Executive Director and Co-Founder.
When my husband was out of work for several months because of COVID-19, our family applied for and received one of the FamilieSCN2A COVID Relief Grants. Receiving this grant allowed us maintain our financial security during a time of uncertainty. We are so grateful for the support the foundation has provided for our family.