Comments for RARE Project http://rareproject.org RARE disease awareness, support, advocacy, & research Tue, 15 May 2012 10:41:38 +0000 hourly 1 http://wordpress.org/?v=3.3.2 Comment on 1p36 Duplication: Ten Miracle Years by michelle peel http://rareproject.org/2012/05/11/1p36-duplication-ten-miracle-years/#comment-4599 michelle peel Tue, 15 May 2012 10:41:38 +0000 http://rareproject.org/?p=8676#comment-4599 My daughter Evie-Anne also has 1p36 deletion syndrome, we have an amazing online 1p36 deletion syndrome community, We hope you can join us. www.facebook.com/groups/1p36dsa/ My daughter Evie-Anne also has 1p36 deletion syndrome, we have an amazing online 1p36 deletion syndrome community, We hope you can join us.
http://www.facebook.com/groups/1p36dsa/

]]> Comment on Breaking the Chains of Control by Breaking the Chains of Control | Vanessa Lemminger, M.A., IMF 68894 http://rareproject.org/2012/05/14/breaking-the-chains-of-control/#comment-4593 Breaking the Chains of Control | Vanessa Lemminger, M.A., IMF 68894 Mon, 14 May 2012 18:06:05 +0000 http://rareproject.org/?p=8741#comment-4593 [...] Check out my article on R.A.R.E. Project blog as well! [...] [...] Check out my article on R.A.R.E. Project blog as well! [...]

]]> Comment on PATIENT STORIES OF HOPE AND INSPIRATION by Heather Earley http://rareproject.org/2012/02/13/patient-stories-of-hope-and-inspiration-8/#comment-4564 Heather Earley Fri, 11 May 2012 15:27:00 +0000 http://rareproject.org/?p=7043#comment-4564 Hi Carlee! Thank you for the reference to the ChILD Lung Foundation, which for our readers can be found on the web at this address: http://www.childlungfoundation.org/. Would love to hear more about your experiences with this organization as well as how you and your son are doing! Please feel free to contact us at info@rareproject.org! Thank you for the reference and we couldn't agree with you more - 'we NEED to know one another'! All my best, Heather RARE Project Hi Carlee!

Thank you for the reference to the ChILD Lung Foundation, which for our readers can be found on the web at this address: http://www.childlungfoundation.org/. Would love to hear more about your experiences with this organization as well as how you and your son are doing! Please feel free to contact us at info@rareproject.org! Thank you for the reference and we couldn’t agree with you more – ‘we NEED to know one another’!

All my best,
Heather
RARE Project

]]> Comment on PATIENT STORIES OF HOPE AND INSPIRATION by Carlee Gilbert http://rareproject.org/2012/02/13/patient-stories-of-hope-and-inspiration-8/#comment-4559 Carlee Gilbert Fri, 11 May 2012 10:02:51 +0000 http://rareproject.org/?p=7043#comment-4559 Hi! Hope you're getting things sorted. There is a Silvi Plado and team based at Tannin (or Tartu) University with an interest in chILD. They attend the International chILD meetings. They will (hopefully) be setting up chILD Family contacts. Please email silvi.plado@lastehaigla.ee to see if they are doing this for Estonia. Take care, Carlee x Hi! Hope you’re getting things sorted. There is a Silvi Plado and team based at Tannin (or Tartu) University with an interest in chILD. They attend the International chILD meetings. They will (hopefully) be setting up chILD Family contacts. Please email silvi.plado@lastehaigla.ee to see if they are doing this for Estonia.

Take care,

Carlee x

]]> Comment on PATIENT STORIES OF HOPE AND INSPIRATION by Carlee Gilbert http://rareproject.org/2012/02/13/patient-stories-of-hope-and-inspiration-8/#comment-4558 Carlee Gilbert Fri, 11 May 2012 09:46:54 +0000 http://rareproject.org/?p=7043#comment-4558 How is Braydon doing? Just come across this story and hope that all is well. I'm surprised that the chILD Foundation US and the chILDRN (the medical chILD network)has not been mentioned. There are many specialist chILD centres now in the US that deal specificially with chILD and complex cases such as ABCA3. I hope that you have been referred to one of their specialists. My son has ABCA3 and is now 3. Doing exceptionally well considering everything he has been through since his first breath. We are based in the UK and have set up chILD Lung Foundation, a sister organisation to the US (but they're better lol). We need to raise awareness about all surfactant diseases. Did you know that CF is ABCA9? And the amount of money and research that gets pumped into that! Certainly there are different prevalence rates and other factors involved but still the effects of ABCA3 can be just as devastating. It is a time bomb waiting to go off. Please email info@childlungfoundation as we need to band together with our chILD groups to get ABCA3 research going. Doctors are interested in research but we NEED to know one another. Money for funding is starting to trickle through. If you know any other surfactant affected families please recommend the chILD US or UK branch. We also have branches in Spain and Australia. Take care all. Carlee x How is Braydon doing? Just come across this story and hope that all is well.

I’m surprised that the chILD Foundation US and the chILDRN (the medical chILD network)has not been mentioned. There are many specialist chILD centres now in the US that deal specificially with chILD and complex cases such as ABCA3. I hope that you have been referred to one of their specialists.

My son has ABCA3 and is now 3. Doing exceptionally well considering everything he has been through since his first breath. We are based in the UK and have set up chILD Lung Foundation, a sister organisation to the US (but they’re better lol). We need to raise awareness about all surfactant diseases. Did you know that CF is ABCA9? And the amount of money and research that gets pumped into that! Certainly there are different prevalence rates and other factors involved but still the effects of ABCA3 can be just as devastating. It is a time bomb waiting to go off.

Please email info@childlungfoundation as we need to band together with our chILD groups to get ABCA3 research going. Doctors are interested in research but we NEED to know one another. Money for funding is starting to trickle through. If you know any other surfactant affected families please recommend the chILD US or UK branch. We also have branches in Spain and Australia.

Take care all.

Carlee x

]]> Comment on FOR IMMEDIATE RELEASE – HR 5651, the Food and Drug Administration Reform Act of 2012 by Marianne Vennitti http://rareproject.org/2012/05/10/for-immediate-release-hr-5651-the-food-and-drug-administration-reform-act-of-2012/#comment-4550 Marianne Vennitti Fri, 11 May 2012 00:29:44 +0000 http://rareproject.org/?p=8689#comment-4550 Julie, This is a great step for the rare community. Your work is greatly appreciated. Marianne Vennitti Cryoglobluminemia Vasculitis Organization CVO-Assistant Director Julie,

This is a great step for the rare community. Your work is greatly appreciated.
Marianne Vennitti
Cryoglobluminemia Vasculitis Organization
CVO-Assistant Director

]]> Comment on PATIENT STORIES OF HOPE AND INSPIRATION by Mindi Hepburn http://rareproject.org/2012/02/13/patient-stories-of-hope-and-inspiration-8/#comment-4544 Mindi Hepburn Wed, 09 May 2012 22:39:06 +0000 http://rareproject.org/?p=7043#comment-4544 Hello! I wanted to say that I am praying for you and your little boy, my son has abca3 surfactant deficiency as well he just turned 4 this past march, we live in columbus ohio also. Is there any way you can contact me? my email is mindi.hepburn@my.chamberlain.edu Hello! I wanted to say that I am praying for you and your little boy, my son has abca3 surfactant deficiency as well he just turned 4 this past march, we live in columbus ohio also. Is there any way you can contact me? my email is mindi.hepburn@my.chamberlain.edu

]]> Comment on Salt Wasting and Congenital Adrenal Hyperplasia by Brenda http://rareproject.org/2012/03/27/salt-wasting-and-congenital-adrenal-hyperplasia/#comment-4517 Brenda Mon, 07 May 2012 13:52:42 +0000 http://rareproject.org/?p=8119#comment-4517 I have two boys 16 1/2 and 14 both have salt wasting CAH. I also have 3 other children who don't. We have had a lot of trials and tribulations through this. We also live in Canada. If you would like to talk, would be happy to hear from you I have two boys 16 1/2 and 14 both have salt wasting CAH. I also have 3 other children who don’t. We have had a lot of trials and tribulations through this. We also live in Canada. If you would like to talk, would be happy to hear from you

]]> Comment on Zak’s Promise by Natalie Bassel http://rareproject.org/2012/02/27/zaks-promise/#comment-4442 Natalie Bassel Tue, 01 May 2012 20:54:55 +0000 http://rareproject.org/?p=7737#comment-4442 My husband Stan and I are the proud grandparents of Zak and his little sister Lily. To know Zak is to love him. From the moment he entered this world, we knew we were blessed. Through life's adversities and hiccups, he continually accomplishes goals that we never knew were possible. He is a source of pride to his parents, grandparents, aunts, uncles and cousins. Zak has hundreds of friends, and when his face was on every billboard, taxi, subway in New York, he made millions of friends. It was surreal to see him get on the subway and people would recognize him and offer him their seat and a "high five" to say hello. He is an inspiration to all, but his parents deserve the accolades. They have been loving, supportive and dedicated to giving him every opportunity to excel, learn and strive for the best. He was sent here for a reason. He is so gentle and loving to his little sister, it is a joy to watch them together. We are truly blessed. Love you, Nana & Poppa xoxoxo My husband Stan and I are the proud grandparents of Zak and his little sister Lily. To know Zak is to love him. From the moment he entered this world, we knew we were blessed. Through life’s adversities and hiccups, he continually accomplishes goals that we never knew were possible. He is a source of pride to his parents, grandparents, aunts, uncles and cousins. Zak has hundreds of friends, and when his face was on every billboard, taxi, subway in New York, he made millions of friends. It was surreal to see him get on the subway and people would recognize him and offer him their seat and a “high five” to say hello. He is an inspiration to all, but his parents deserve the accolades. They have been loving, supportive and dedicated to giving him every opportunity to excel, learn and strive for the best. He was sent here for a reason. He is so gentle and loving to his little sister, it is a joy to watch them together. We are truly blessed. Love you, Nana & Poppa xoxoxo

]]> Comment on 25 De-stressing Mini-Tips by Have you seen my posts on the R.A.R.E. Project’s blog? | Vanessa Lemminger, M.A., IMF 68894 http://rareproject.org/2012/04/30/25-de-stressing-mini-tips/#comment-4414 Have you seen my posts on the R.A.R.E. Project’s blog? | Vanessa Lemminger, M.A., IMF 68894 Mon, 30 Apr 2012 20:48:50 +0000 http://rareproject.org/?p=8620#comment-4414 [...] You can also find some of my articles on the R.A.R.E. Project’s blog!! http://rareproject.org/2012/04/30/25-de-stressing-mini-tips/ [...] [...] You can also find some of my articles on the R.A.R.E. Project’s blog!! http://rareproject.org/2012/04/30/25-de-stressing-mini-tips/ [...]

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