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FamilieSCN2A Foundation

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Nonprofit Overview

Causes: Health

Mission: Our mission is to improve the lives of those affected by SCN2A related disorders through research, public awareness, family support and patient advocacy.

Target demographics: Patients with rare forms of autism and epilepsy caused by a change in the SCN2A gene.

Direct beneficiaries per year: 1000 families and growing

Geographic areas served: Worldwide.

Programs: Research Grants, Advocacy, Family Event Grants, Patient Assistance Grants, Birthday Club Program and Bereavement & Crisis Program

Community Stories

40 Stories from Volunteers, Donors & Supporters

Donor

Rating: 5

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.

Donor

Rating: 5

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.

Mary Francis R.

Donor

Rating: 5

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.

2

Donor

Rating: 5

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.

2

Professional with expertise in this field

Rating: 5

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.

2

Donor

Rating: 5

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!

2

Professional with expertise in this field

Rating: 5

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.

2 Amanda Van S.

Client Served

Rating: 5

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!

2

Client Served

Rating: 5

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!

2 Jason B.10

General Member of the Public

Rating: 5

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.

1

Board Member

Rating: 5

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.

2

General Member of the Public

Rating: 5

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!

3

Advisor

Rating: 5

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.

3

Donor

Rating: 5

Such a wonderful group of dedicated and result driven families. The love and support is nothing short of amazing.

3

Professional with expertise in this field

Rating: 5

Very responsive and doing great work for the entire SCn2A community. They are also incredibly collaborative and transparent.

3 Catalina Betancur S.

Board Member

Rating: 5

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.

Previous Stories
5

Board Member

Rating: 5

This organization is dear to our heart. We have a child with SCN2A Related Autism and the board members and the community have always been there for us in all moments of the journey.. the good and the not so good. Managed by committed members that fight every day to bring a cure to our kids

3 Stephanie Paul C.

General Member of the Public

Rating: 5

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.

3

Client Served

Rating: 5

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!

Previous Stories
3

Volunteer

Rating: 5

At the time my grandson was diagnosed with an SCN2A mutation almost nine years ago there was little hope for successful treatments, let alone a cure. Continued seizures and autism were expected. Giving up and accepting this was not an option so this group gradually formed to support each other and share experiences. It has now grown into a strong foundation actively promoting new research and impacting lives daily. I am so inspired and grateful to be a member of this brave community of warriors. I have hope for my precious grandson!

2 Patricia R.10

Client Served

Rating: 5

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.

3

Board Member

Rating: 5

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.

Previous Stories
5

Board Member

Rating: 5

The FamilieSCN2A Foundation was set up by parents who stood up to fight back against this disease not only for their children, but for all those diagnosed now and who will be in the future. This was not a small undertaking and their work and dedication to the cause spilled out into the broader rare disease space causing a ripple effect of more families standing up to fight back and more foundations forming. We are honored to be part of such a Passion and successful group of individuals.

2

Volunteer

Rating: 5

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!!

2 Michele Alter B.

Volunteer

Rating: 5

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.

Previous Stories
4

Donor

Rating: 5

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.

3

Client Served

Rating: 5

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.

3 Mery Jien O.

Board Member

Rating: 5

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!

3 Joey T.2

Volunteer

Rating: 5

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.

2

Volunteer

Rating: 5

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.

2

Professional with expertise in this field

Rating: 5

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!

3 Merri Jo O.

General Member of the Public

Rating: 5

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 !

3

General Member of the Public

Rating: 4

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.

5 Anita M.2

Client Served

Rating: 5

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.

6

Client Served

Rating: 5

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.

5 Sam P.7

Client Served

Rating: 5

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).

4

Board Member

Rating: 5

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.

4

Donor

Rating: 5

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.

6

Client Served

Rating: 5

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.

6 Carla M F.

Board Member

Rating: 5

The FamilieSCN2A Foundation has changed the future of patients with SCN2A related disorders. Before this organization was formed, patients were told they were the only case of SCN2A and there was no possible treatment in the future. Now, 5 years later ... the organization has an international community of 600 families and treatments in the pipeline. There is hope for SCN2A. Thank you to the FamilieSCN2A for creating hope and be the example that we are stronger together.