SMC1A Foundation

SMC1A families story is one of heartbreak and hope, of shattered dreams and unwavering determination. It is the story of parents who refuse to accept the bleak prognosis for their daughters with SMC1A Developmental Epileptic Encephalopathy (DEE). We have come together with a shared purpose - to raise funds for research with the focus on developing effective treatments for our kids; and we ask for your help in raising the funds needed to combat SMC1A DEE.

From the moment our children entered this world, we envisioned a future of independence and success for them. We eagerly awaited their first steps, their first words, and all the milestones that would follow. But for our families, these dreams are shattered. It is impossible to describe the fear, helplessness, and pain of watching your child unable to breathe gasping for air, their cheeks turning blue, and knowing that they may never walk, talk, or even survive to adulthood.

SMC1A DEE is a catastrophic form of epilepsy that defies conventional treatment methods. It affects only females and is SO rare that it doesn't have a name. The prognosis and life expectancy for those with this disease remain uncertain, as the severity of seizures contributes to a progressive regression in health and development. Imagine the frustration of learning to walk, talk, and feed yourself, only to have these abilities cruelly stripped away from you by relentless seizures.

But what makes our reality even more agonizing is knowing that the science for effective treatments exist. Yet, like many orphan diseases, the funding needed for research does not.

WHY WE CROWDFUND:

This is why we turn to crowdfunding - to raise the resources necessary to pave a brighter path for our daughters and all future generations affected by the SMC1A DEE.

WHY TIME IS OF THE ESSENCE

Every day lost to uncontrollable seizures is a day robbed from our children's potential and health. By joining forces and pooling our resources, we can make a difference. Through crowdfunding, we can create a united front and demonstrate our determination to find effective treatments that will give these girls a chance to chase their dreams.

WHAT HAPPENS TO YOUR DONATION:

Every penny goes directly to research being done on SMC1A DEE through several amazing hospitals and universities around the world. Our founders cover operational and related costs. See our Road Map to Cure here (link to https://smc1a-epilepsy.org/cure-rare-disease/) and read about treatment options that we are focusing on funding here (https://smc1a-epilepsy.org/fundraise/).

We are currently racing against time to find effective treatments and ultimately a cure for all SMC1A DEE children.

HOW YOU CAN HELP TODAY:

1) GIVE whatever you can. No donation is too small (US tax-deductible)

2) SHARE on social media (#cure_SMC1A)

3) EMAIL, text, IM this page - gofundme:

hope-for-her-smc1a-gene-therapies - to your family + friends.

From the bottom of our hearts we thank you, we will be forever grateful for your help and support to help SMC1A DEE children.

Together, we can rewrite the narrative for these girls and ensure that their dreams are not shattered before they even have a chance to begin. Let us join hands in this fight and create a brighter future for all those affected by this devastating disease.

Read more on us at smc1a-epilepsy.org. All donations are tax deductible. SMC1A Foundation is a designated 501(c)3 charitable organization, registered with the IRS under its Federal Employer ID Number EIN 84-3406755