Comments on: What matters? When families affected by a rare disorder meet, it’s powerfully clear . . . http://www.baltimorebrew.com/2009/10/07/what-matters-when-families-affected-by-a-rare-disorder-meet-its-powerfully-clear/ Stirring Up Baltimore News and Views Mon, 21 May 2012 02:42:00 +0000 hourly 1 http://wordpress.org/?v=3.3.2 By: TD http://www.baltimorebrew.com/2009/10/07/what-matters-when-families-affected-by-a-rare-disorder-meet-its-powerfully-clear/comment-page-1/#comment-16478 TD Thu, 03 Jun 2010 16:24:11 +0000 http://baltimorebrew.com/publish/?p=5142#comment-16478 What an incredibly moving piece, I don't know what to say. Thank you so much for sharing it. What an incredibly moving piece, I don’t know what to say. Thank you so much for sharing it.

]]> By: Molly Volker http://www.baltimorebrew.com/2009/10/07/what-matters-when-families-affected-by-a-rare-disorder-meet-its-powerfully-clear/comment-page-1/#comment-11465 Molly Volker Thu, 25 Feb 2010 20:44:02 +0000 http://baltimorebrew.com/publish/?p=5142#comment-11465 My daughter Nora was just diagnosed with CFC today. This article gave me so much hope. Thank you! My daughter Nora was just diagnosed with CFC today. This article gave me so much hope. Thank you!

]]> By: Gerd Anita http://www.baltimorebrew.com/2009/10/07/what-matters-when-families-affected-by-a-rare-disorder-meet-its-powerfully-clear/comment-page-1/#comment-7610 Gerd Anita Tue, 01 Dec 2009 21:45:27 +0000 http://baltimorebrew.com/publish/?p=5142#comment-7610 It is interesting learning abouth CFC. I vondering if someone know the adge of the eldest with CFC. I am from Norway and i know someone with CFC. It is interesting learning abouth CFC. I vondering if someone know the adge of the eldest with CFC. I am from Norway and i know someone with CFC.

]]> By: Joan http://www.baltimorebrew.com/2009/10/07/what-matters-when-families-affected-by-a-rare-disorder-meet-its-powerfully-clear/comment-page-1/#comment-4812 Joan Thu, 08 Oct 2009 16:21:15 +0000 http://baltimorebrew.com/publish/?p=5142#comment-4812 Congratulations, Jennifer, for providing such an impassioned voice for a segment of the population that has too often been silenced! Congratulations, Jennifer, for providing such an impassioned voice for a segment of the population that has too often been silenced!

]]> By: Pam Babij http://www.baltimorebrew.com/2009/10/07/what-matters-when-families-affected-by-a-rare-disorder-meet-its-powerfully-clear/comment-page-1/#comment-4811 Pam Babij Thu, 08 Oct 2009 15:37:11 +0000 http://baltimorebrew.com/publish/?p=5142#comment-4811 Jennifer, How beautiful. Thank you for helping me experience a slice of your life and that of a very select few families, researchers and caregivers. Pam Jennifer, How beautiful. Thank you for helping me experience a slice of your life and that of a very select few families, researchers and caregivers. Pam

]]> By: Alexis http://www.baltimorebrew.com/2009/10/07/what-matters-when-families-affected-by-a-rare-disorder-meet-its-powerfully-clear/comment-page-1/#comment-4795 Alexis Thu, 08 Oct 2009 01:20:56 +0000 http://baltimorebrew.com/publish/?p=5142#comment-4795 You have a talent for observation. I am one of the medical team people who very much enjoy these conferences. I don't know that I've heard someone express my viewpoint before, but you are absolutely right in the awe we feel at getting to absorb so deeply what it is to live with a particular rare condition. It helps us to focus down on what is unique about a particular condition (biology) and what is common to all (finding one's path when living with a disability). I enjoyed your piece very much. Thank you. You have a talent for observation. I am one of the medical team people who very much enjoy these conferences. I don’t know that I’ve heard someone express my viewpoint before, but you are absolutely right in the awe we feel at getting to absorb so deeply what it is to live with a particular rare condition. It helps us to focus down on what is unique about a particular condition (biology) and what is common to all (finding one’s path when living with a disability).

I enjoyed your piece very much. Thank you.

]]> By: Brenda Conger http://www.baltimorebrew.com/2009/10/07/what-matters-when-families-affected-by-a-rare-disorder-meet-its-powerfully-clear/comment-page-1/#comment-4794 Brenda Conger Wed, 07 Oct 2009 23:48:56 +0000 http://baltimorebrew.com/publish/?p=5142#comment-4794 Jennifer, I am in a tailspin working around the clock at these conferences. When I come home and try to come up for air I look back now and see what you saw. Thank you for recharging my batteries and allowing me to see the power of all of our work; Researchers, families, volunteers and most important, the children who have touched so many hearts on this planet. Brenda Conger President CFC International Jennifer,
I am in a tailspin working around the clock at these conferences. When I come home and try to come up for air I look back now and see what you saw. Thank you for recharging my batteries and allowing me to see the power of all of our work; Researchers, families, volunteers and most important, the children who have touched so many hearts on this planet.

Brenda Conger
President
CFC International

]]> By: Diane Fadely http://www.baltimorebrew.com/2009/10/07/what-matters-when-families-affected-by-a-rare-disorder-meet-its-powerfully-clear/comment-page-1/#comment-4785 Diane Fadely Wed, 07 Oct 2009 17:16:33 +0000 http://baltimorebrew.com/publish/?p=5142#comment-4785 Beautifully and sensitively written, Jennifer! You have so much to share with others. I hope you'll continue to enlighten us with your insights and feelings as you travel your unexpected journey. You and your family are in my thoughts and prayers. Diane Fadely Beautifully and sensitively written, Jennifer! You have so much to share with others. I hope you’ll continue to enlighten us with your insights and feelings as you travel your unexpected journey. You and your family are in my thoughts and prayers.

Diane Fadely

]]> By: Anonymous http://www.baltimorebrew.com/2009/10/07/what-matters-when-families-affected-by-a-rare-disorder-meet-its-powerfully-clear/comment-page-1/#comment-4777 Anonymous Wed, 07 Oct 2009 14:49:18 +0000 http://baltimorebrew.com/publish/?p=5142#comment-4777 Great piece. Really enjoyed reading it. Well done Jennifer! Michelle Great piece. Really enjoyed reading it. Well done Jennifer!
Michelle

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