Comments for RE Children's Project Blog

Comment on Community support by Scarlett De Bease

Scarlett De Bease — Wed, 11 Apr 2012 12:23:23 +0000

I am so impressed at how much awareness, and money, you have raised in honor of your wonderful daughter Grace.
Our son also has uncontrolled seizures, and I wish our community rallied around us as much as your wonderful Darien Ct. has for you and your family.
As parents, we will NEVER give up fighting for our children and looking for solutions.
Thank you so much for getting the word out.

Comment on Rare disease research by Michael Dayton

Michael Dayton — Wed, 21 Mar 2012 16:16:05 +0000

As an advocate for rare diseases, as well as having a rare disease myself, I would like to pass along some helpful information about an interesting company, The Rare Genomics Institute. The Rare Genomics Institute is a non-profit organization that focuses on helping patients and families with rare/orphan diseases that might benefit from genome sequencing. Rare Genomics Institute helps patients with gaining access to genome sequencing services, support, and funding. Washington University School of Medicine’s Genomics and Pathology Services and the Rare Genomics Institute are planning to award grants for the sequencing of 99 exomes to rare disease advocacy groups. The grants will be free of charge to the rare diseases community. Interested applicants should submit letters of interest by April 2. If you are interested, visit the web site for this program at the Rare Genomics Institute site: http://www.raregenomics.org/rare99x
Mike Dayton

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Comment on Call for RE blood and tissue by Logger

Logger — Sun, 11 Mar 2012 06:18:29 +0000

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Comment on Research Summary by Tobias Stadler

Tobias Stadler — Tue, 21 Feb 2012 11:06:06 +0000

I am so grateful for your blog post.Thanks Again. Much obliged.

Comment on IOM Letter From Dr. Gary Mathern by Story Time, Childrens Storys, Kids Storys

Story Time, Childrens Storys, Kids Storys — Tue, 07 Feb 2012 14:20:55 +0000

Wow, marvelous blog layout! How lengthy have you ever been blogging for? you made blogging glance easy. The overall glance of your web site is wonderful, as smartly as the content material!

Comment on Rasmussen’s 101 by Nicole beno

Nicole beno — Sun, 08 Jan 2012 16:11:33 +0000

Tell Grace happy birthday from me!

Comment on Hemispherectomy 101 by David Stauff

David Stauff — Sun, 09 Oct 2011 02:31:11 +0000

Thanks Seth for the link to Dr. Mathern’s paper. It has been such a process to understand more about this, and how Evan fits in. Also, great WSJ article; looking forward to hearing more.

Comment on Rasmussen’s Untreated by Carolyn Pinto

Carolyn Pinto — Mon, 03 Oct 2011 09:59:52 +0000

Seth,
this is a very important issue. While there are a few reported cases of RE burning out before it causes major functional and cognitive deficits, these cases are rare. For most sufferers, RE is a devastating and progressive disease that will destroy any quality of life. Unfortunately, in the absence of a non-surgical cure, the decision should be about the optimal timing of hemispherectomy, not whether a hemipherectomy is the correct option.

Comment on Rasmussen’s Untreated by Deirdre Pinto

Deirdre Pinto — Mon, 03 Oct 2011 02:12:34 +0000

Thanks for posting this Seth. While there is a great deal on the Internet about outcomes post hemispherectomy there is very little information about what happens to RE patients who do not have a hemispherectomy. I wish we had better news for parents grappling with RE, and hopefully one day we will, but at the moment the evidence seems to support the case for hemispherectomy, at least in younger patients. Your point is well made though that hemispherectomy might not be the best option for older patients. These are extraordinary difficult decisons whatever the circumstances.