Comments for Rally for Reed

Comment on Our First Visit to the Natural History Study by Sanfilippo Congress: Geneva 2011(Updated) | Rally for Reed

Sanfilippo Congress: Geneva 2011(Updated) | Rally for Reed — Tue, 20 Dec 2011 18:52:47 +0000

[...] this fight along with families. I am also grateful for the families that have participated in the Natural History Study of these diseases. It is a tough choice for families to get involved. The procedures are [...]

Comment on A Rare Disease Patient Perspective by zeighami

zeighami — Thu, 08 Sep 2011 00:06:04 +0000

Laura, I will keep Taylor in my prayers. I know only a little about Batten disease but understand that it is very similar to Sanfilippo. I do know that the older siblings of MPS children are some of the most amazing people on this planet and it sounds like that it is true for you. It is so sad that children with these diseases are neglected. We all need to stick together and demand that all of our children get a chance.

Comment on A Rare Disease Patient Perspective by Laura Edwards

Laura Edwards — Wed, 07 Sep 2011 23:18:37 +0000

Thank you for painting such an accurate picture of the rare disease community. My younger sister, Taylor, has infantile NCL (infantile Batten disease). I, too, believe that the 30 million Americans (and untold others worldwide) with rare diseases deserve a chance. I’m willing to fight to give them that chance, and I only wish that we had more voices like yours to lead us to victory.

Comment on A Rare Disease Patient Perspective by Laura Edwards

Laura Edwards — Wed, 07 Sep 2011 23:12:47 +0000

Thank you for this revealing look at the lives led by families of people with rare, incurable diseases. My little sister, Taylor, has infantile NCL (infantile Batten disease) – which, like Sanfilippo, is a rare neurodegenerative disease that strikes children and has no treatment. We need more people like you in the fight to give the 30 million people with a rare disease – and that’s just in the United States – the chance they deserve. http://www.writethehappyending.com

Comment on How-to: Vivint Voting by Alisa Groves

Alisa Groves — Thu, 30 Jun 2011 20:50:34 +0000

Praying for your family!!!!

Comment on Vivint Video by melinda

melinda — Mon, 13 Jun 2011 02:13:24 +0000

I love it Roy! Great job!!!!

Comment on Reed has “the moves” by melinda

melinda — Sun, 12 Jun 2011 15:05:09 +0000

How cute!

Comment on Reed has “the moves” by zeighami

zeighami — Sat, 11 Jun 2011 22:25:00 +0000

Ha! Thanks Angela. I was impressed with Emily’s trike riding skillz!

Comment on Reed has “the moves” by Angela Sawyer

Angela Sawyer — Sat, 11 Jun 2011 21:39:12 +0000

Boogie down, dude!!! I love that he sings and dances, a real double threat!

Comment on Nueral Stem Cells by zeighami

zeighami — Fri, 10 Jun 2011 13:13:49 +0000

Thanks Felicia. You are the best!