Friday, December 23, 2005

This blog site is intended to be an open message board for parents caring for children with Cobalamin Metabolism Disorders and pigmentary retinopathy. Hopefully a venue for the exchange of ideas and experiences will help foster a community of support for families who sometimes may feel alone in their efforts.


Blogger Kimberly Solomon said...

Merry Christmas to everyone! I am so excited to have a "link" to everyone and thank you to Josephine and Bob for creating this special link! Great things come to those who wait.

5:32 AM  
Blogger Michael's Dad said...

We all want to wish everyone a happy holiday season!!I hope that I will be able to share alot of good news in the beginning of the year about some of the fund raising efforts we have been pursuing. Until then,be merry!!!

10:33 AM  
Blogger Ilene said...

Hi- We have a daughter Jessica age 13 with CBL C. The Hoffman family gave us the info regarding your web site. We live in Illinois outside of chicago. Please keep us on your list when you send out info about your fund raiser. My husband Dan works for Walgreen's and travels to NY.
Look forward to connecting with you.
Ilene Osran

1:30 PM  
Blogger Michael's Dad said...

You have no idea how excited we are to find a new post on this blog site from a family we have never met. We hope that through our efforts with Michael's Fund we can bring other families together that share this common experience of caring for a child who suffers from this rare disorder. My brother and I are actively trying to organize an annual Rock 4 Retinas concert at Lincoln Center with singer/songwriter Lisa Loeb. Our hope is that we can draw some well known celebrities to our cause and help in raising funds that would be directly used in labs dedicated to finding the correlation between Cobalamin C metabilism disorder and pigmentary retinopathy.

Are you aware of the recent NIH study? Please feel free to contact me.

6:03 PM  
Blogger Ilene said...

HI, I saw your post on the OAA web site. We have a 13 year old daughter w/ CBLC. Sounds like they have similiar issues. I am a better phone person than writter. when you have time- 847-562-1551
Ilene and Dan Osran
Jessica age 13 CBL c

1:48 PM  
Blogger Karen said...

Hi, I just found out about your blog site through our OAA list serve. We also have a son named Michael with Cbl C. He is 17 years old, almost 18 (in May)! We look forward to conversing with you, as well as meeting you some day. Sincerely, Karen Dalton

2:06 PM  
Anonymous Anonymous said...

What a wonderful website....extremely informative. I live in NH and have a 3 year old daughter with CblG (and 4 other unaffected children). We are headed to NIH in June for Dr. Vendetti's study and are thrilled that someone is studying these disorders....are you participating?? Thanks for the site. My very best to you and your family. Cricket Prevost

5:31 PM  
Blogger Kimberly Solomon said...

Hi all! I wanted to let anyone know who is reading this, that I would love to hear from any families suffering with Cobalamin defects. Please email me, Kim.
Mother of Brandon, 11 CBLc defect

6:27 PM  
Anonymous Deana said...

I found your website through seraching for Children with CblC on google's search engine. Our son was diagnosed at 4 months old. He'll be 3 on Tuesday. I'm glad to see that there are more parents out there linking up! We are located in Colorado, and our son sees the Metabolic doctors at Children's hospital Denver.

9:23 PM  
Anonymous Anonymous said...

We have a daughter with Cbl C. She just turned 1 and she has a twin brother, who is unaffected. I was hoping to speak with you further regarding Michael's Ophthalmologist, and thought maybe you could offer suggestions. Thanks,

5:41 AM  
Anonymous Anonymous said...

HI, I saw your post on the OAA web site. we have a 3 year old son with CBLC. Sounds like they have similiar issues.I would like to know if some body can write me and
share this common experience of caring for a child who suffers from this rare disorder. and what kind of nutrition amounts and how often.What effects of CBLC has your child experienced? Our child is blind and has a trach,and is on a ventilater @ night. Hoping to hear from you soon. this is my
e-mal Wishing all families a Very Merry CHRISTMAS. nathans mom

11:45 AM  
Anonymous Christa said...

So greatful to find a web site talking about Cblc. My daughter is 3 months old. And my husband and I are not sure what to expect. We have to other child that are uneffected.

3:55 PM  
Blogger Michael's Dad said...

Dear Christa
Thanks for checking out the site we are always thrilled when someone finds us.If you can think of anything we may be able to help you with just give us a shout.

10:13 AM  

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