Ayanna’s Song

Ayanna’s Song

I wanted to share with you a song I wrote and recorded for a 4-year-old little girl named Ayanna, who has Dravet Syndrome. Share/Bookmark

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Dravet Syndrome Research Opportunity

This is an opportunity to help with Dravet Syndrome research. It is an optional survey. This is generated by an organization independent from ICE Epilepsy Alliance. If you are interested please click on the link below to fill out the online survey. Completion takes about three to five minutes. Please complete as soon as possible but by Friday April 27th. http://www.surveybuilder.com/s/JqbXWH85wAA

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ICE Hosts Event at CNS Oct. 26

ICE Hosts Event at CNS Oct. 26

ICE Epilepsy Alliance is hosting an invite only group dinner discussion at the CNS Annual Meeting Titled "Investigational Drugs for Intractable Epilepsy".

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Aspiring Celebrity Spokesperson for Epilepsy

Aspiring Celebrity Spokesperson for Epilepsy

ICE Founder Michelle Welborn's daughter, Logan Welborn, age 11, sings at Child Neurology Foundation and CURE Epilepsy Galas in 2011

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Fundraiser at Bowman Gray Stadium

Fundraiser at Bowman Gray Stadium

Winston-Salem, NC – The Law Offices of Timothy D. Welborn and ICE Epilepsy Alliance will team up this Friday night, June 3, for a fundraising event at Bowman Gray Stadium in Winston-Salem to generate funds for two seizure alert dogs to be awarded to children in need in 2012.

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American Epilepsy Annual Meeting 2010

American Epilepsy Annual Meeting 2010

The American Epilepsy Society's Annual Meeting is the premiere meeting for epilepsy and other seizure disorders. The Annual Meeting is an international forum for the exchange of current findings in epilepsy research. Information is communicated and disseminated through symposia, lectures, scientific exhibitions, poster and platform presentations.

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Vision 20/20 Task Force

Vision 20/20 Task Force

ICE Epilepsy Alliance is a member of the American Epilepsy Society’s Vision 20/20 Task Force, a group of advocacy groups committed to improve the lives of patients with epilepsy. At the request of the Department of Health and Human Services Office of the Assistant Secretary for Planning and Evaluation, the National Institutes of Health, and Vision 20/20 the Institute of Medicine will convene an ad hoc committee to reco

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ICE 20/20 Fundraiser

ICE 20/20 Fundraiser

ICE EPILEPSY ALLIANCE WILL AWARD A $60,000 GRANT TO DR. ANDREW ESCAYG OF EMORY UNIVERSITY FOR HIS PROOF OF CONCEPT RESEARCH IN CURNA'S ANTISENSE COMPOUND THAT HAS SHOWN PROMISE AS A TREATMENT FOR DRAVET SYNDROME.

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ICE 2010 Newsletter

ICE 2010 Newsletter

Click to download a pdf file of the ICE 2010...

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Encore Discussion about Dravet Syndrome

Encore Discussion about Dravet Syndrome

Picking up from where they left off in their last radio discussion Michelle Welborn and Denise Franklin discuss Dravet Syndrome. A severe form of epilepsy that typically manifests after the first six months of life and before the child's first birthday. This disease is considered a rare disease, and while we are learning more every day about epilepsy there is still so much more to learn.

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ICE Alliance Exhibits in Child Neurology Society Annual Meeting

ICE Alliance Exhibits in Child Neurology Society Annual Meeting

The Intractable Childhood Epilepsy (ICE) Epilepsy Alliance will represent children with drug resistant epilepsy at the 2010 Child Neurology Society’s (CNS) 39th Annual Meeting in Providence, R.I., on Oct. 14 and15. ICE Epilepsy Alliance founder Michelle Welborn, PharmD, and Tammy Robinson, a parent volunteer from Ohio, will represent the ICE Epilepsy Alliance at the conference.

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CDC-NIH Forum on SUDEP

CDC-NIH Forum on SUDEP

Michelle Welborn, PharmD, founder of the Intractable Childhood Epilepsy (ICE) Epilepsy Alliance, is one of 30 epilepsy advocates and researchers who will take part in an open forum discussion in Washington, D.C., on Oct. 13, about the causes of Sudden Unexpected Death in Epilepsy (SUDEP).

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Breakfast Symposium with Ingrid Scheffer, MD

Breakfast Symposium with Ingrid Scheffer, MD

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Fundrasing Party 10/22

Fundrasing Party 10/22

Thursday, October 22nd @6:00pm come visit come join us for a Tomboy Tool party to see a line of ergonomically designed tools at Patton Ridge Farms. A portion of all proceeds will benefit I.C.E Alliance and Walk-On Animal Assisted Therapy Farms.

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As Heard On NPR

As Heard On NPR

Michelle Welborn founded ICE Epilepsy after her daughter was diagnosed with Ion Channel Epilepsy. In this interview on Voices and Viewpoints Michelle, talks about the goals she maintains for the ICE Epilepsy Alliance, the process of getting her daughter's condition diagnosed, and the affect it has had on their family of four.

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Forsyth Family Magazine Article

Forsyth Family Magazine Article

This post includes a link to download the full article about the ICE Alliance and Michelle Welborn's personal journey through the diagnosis of her daughter with Dravet syndrome.

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