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2020 Top-Rated Nonprofit

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: 600 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

18 Stories from Volunteers, Donors & Supporters

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.

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!

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.

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.

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!

1

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 Michele Alter B.

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.

1 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 !

1

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.

2 Catalina Betancur S.

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

2 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.

3

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.

3 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).

2

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.

2

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.

2

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.

4

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.

4 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.