Introducing Dravet Syndrome Foundation

https://is1-ssl.mzstatic.com/image/thumb/Podcasts116/v4/2e/b0/64/2eb06476-b896-1327-cdf3-3ad9d29d8c2c/mza_10601787233884013656.jpg/600x600bb.jpg

ABCs of Disability Planning

194 episodes

1 day ago

Frequently families like mine don't know what's available to help us, we're too focused on getting through our day-to-day. But even if we had time, we would need to know what to look for. It's my mission to introduce a new organization or individual serving those with disabilities every week. All views and opinions represented are my own. I am not writing on behalf of Capital Motion or Visible National Trust. Neither Capital Motion nor Visible National Trust endorse or in any other way support this content and podcast. This podcast is wholly owned and operated by me, Eric Jorgensen.

Parenting

Kids & Family

RSS

All content for ABCs of Disability Planning is the property of ABCs of Disability Planning and is served directly from their servers with no modification, redirects, or rehosting. The podcast is not affiliated with or endorsed by Podjoint in any way.

Parenting

Kids & Family

https://d3t3ozftmdmh3i.cloudfront.net/staging/podcast_uploaded_episode/18940947/18940947-1727341559660-5cdb3fee5e45f.jpg

Introducing Dravet Syndrome Foundation

ABCs of Disability Planning

44 minutes 42 seconds

12 months ago

Introducing Dravet Syndrome Foundation

What is Dravet Syndrome?

Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare form of intractable epilepsy that begins in infancy and proceeds with accumulating morbidity that significantly impacts individuals throughout their lifetime. It has an estimated incidence rate of 1:15,700

Enter the Dravet Syndrome Foundation (DSF).

DSF is a nonprofit organization that acts as a convener of the Dravet syndrome community. Since their founding in 2009, they have engaged and educated all of their community stakeholders – patient families, clinicians, researchers, industry partners, and others – to envision and fight for better treatments, and one day a cure for Dravet syndrome.

They believe that efforts to improve the quality of life for those affected by Dravet syndrome must include the patient's voice and experience to help guide outcomes. DSF is proud to be the largest non-governmental funder of Dravet syndrome research, worldwide.

DSF’s steadfast commitment to advancing Dravet syndrome research, as well as our community’s engagement throughout the clinical trial and drug development process, has helped enable three new treatments for the disease, with several additional clinical trials already underway or soon starting. We have made incredible progress, including the approvals by the U.S. Food and Drug Administration (FDA) of Diacomit® (stiripentol) Epidolex® (cannabidiol), and Fintepla® (fenfluramine). Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare form of intractable epilepsy that begins in infancy and proceeds with accumulating morbidity that significantly impacts individuals throughout their lifetime. It has an estimated incidence rate of 1:15,700.

Connect to learn more:

Website: https://dravetfoundation.org/ Facebook: @DravetSyndromeFoundation

X: @curedravet

IG: @dravetsyndromefoundation

Email: info@dravetfoundation.org

Phone: (203) 392-1955

For more information about Eric Jorgensen you can find him here:

Web: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://visiblenationaltrust.com/⁠⁠⁠⁠

Waypoints: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://waypoints.substack.com/⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/eric-jorgensen-visible-national-trust/⁠⁠⁠