Invite to The Children's Cardiomyopathy Foundation list serve

[Guest guest]

Good afternoon,

I have been working with Yue, founder of The Children's Cardiomyopathy

Foundation as a family moderator. Unfortunately, she and her husband lost

both of their infant sons to Hypertrophic Cardiomyopathy. FOD was suspected

but never confirmed. I am very honored to be working with her as she is a

very strong and driven lady. The website she started offers a great deal of

information on cardiomyopathies. Just recently, she has managed to get a

family list serve going. I'd like to help her with invitations to the

growing list of families. Both of my boys with GAII are only mildly affected

but I know with cardiomyopathy, that status can change very quickly.

The list serve is open to physicians, affected families or any family

dealing with FOD's or Mitochondrial disease. There will be some scheduled

topics of the week. There will be also be weekly guests such as

pediatricians, nutritionist, cardiologist,etc.. to help answer the questions

covered in the weekly topics. This week's topic is " Common Cardiac

Medications -Effectiveness and Side Effects " . Dr. Steve Colan from

Children's Hospital of Boston will be this week's guest. Dr. Colan is also

an Associate Professor of Pediatrics and Chief of Non-Invasive Cardiology at

Harvard Medical School. Dr. Colan is involved with the NIH funded Pediatric

Cardiomyopathy Registry and a CCF Medical Advisor.

Below is an official invitation from Yue herself and a little bit about

C.C.F. I hope you are able to take some time to visit the webiste and become

a member. We hope to see you there.

Thank you very much,

Krystena s

Caden 5 yrs GAII- DCM

Carsen 7mths- GAII-HCM

_______________________________________________

This is to inform you of a new resource for healthcare professionals and

families diagnosed with cardiomyopathy.

The Children's Cardiomyopathy Foundation (C.C.F.) is a non-profit, 501©

(3) organization focused on pediatric cardiomyopathy. C.C.F. is dedicated

to the search for a cure through the support of scientific and medical

research. Additionally, C.C.F. promotes physician education, public

awareness, patient support, and advocacy for affected children and their

families.

More information on C.C.F. Is available at

http://www.childrenscardiomyopathy.org. The site provides medical

information, coping and healing tips, a discussion forum and resource links.

C.C.F. also offers a pamphlet, a family directory and private list serve,

peer support, medical referrals, and assistance in research networking and

funding.

Families interested in participating in the list serve can register at

http://www.childrenscardiomyopathy.org/main/join.htm or email Yue at

info@....

Yue

[Guest guest]

Krystena:

Thank you so much for sharing the Children's Cardiomyopathy Foundation web site. It is incredibly informative and very helpful. My son Jonah, now 7.5 yrs. of age, went into congestive heart failure at 4 months of age. He was diagnosed with dilated cardiomyopathy and subsequently diagnosed with mitochondrial myopathy due to Complex IV issues. Although we have had some scary periods, he is currently relatively stable on a suite of heart meds.

Thanks again.

Diane

Invite to The Children's Cardiomyopathy Foundation list serve

Good afternoon,I have been working with Yue, founder of The Children's CardiomyopathyFoundation as a family moderator. Unfortunately, she and her husband lostboth of their infant sons to Hypertrophic Cardiomyopathy. FOD was suspectedbut never confirmed. I am very honored to be working with her as she is avery strong and driven lady. The website she started offers a great deal ofinformation on cardiomyopathies. Just recently, she has managed to get afamily list serve going. I'd like to help her with invitations to thegrowing list of families. Both of my boys with GAII are only mildly affectedbut I know with cardiomyopathy, that status can change very quickly.The list serve is open to physicians, affected families or any familydealing with FOD's or Mitochondrial disease. There will be some scheduledtopics of the week. There will be also be weekly guests such aspediatricians, nutritionist, cardiologist,etc.. to help answer the questionscovered in the weekly topics. This week's topic is "Common CardiacMedications -Effectiveness and Side Effects". Dr. Steve Colan fromChildren's Hospital of Boston will be this week's guest. Dr. Colan is alsoan Associate Professor of Pediatrics and Chief of Non-Invasive Cardiology atHarvard Medical School. Dr. Colan is involved with the NIH funded PediatricCardiomyopathy Registry and a CCF Medical Advisor.Below is an official invitation from Yue herself and a little bit aboutC.C.F. I hope you are able to take some time to visit the webiste and becomea member. We hope to see you there.Thank you very much,Krystena sCaden 5 yrs GAII- DCMCarsen 7mths- GAII-HCM_______________________________________________This is to inform you of a new resource for healthcare professionals andfamilies diagnosed with cardiomyopathy.The Children's Cardiomyopathy Foundation (C.C.F.) is a non-profit, 501©(3) organization focused on pediatric cardiomyopathy. C.C.F. is dedicatedto the search for a cure through the support of scientific and medicalresearch. Additionally, C.C.F. promotes physician education, publicawareness, patient support, and advocacy for affected children and theirfamilies.More information on C.C.F. Is available athttp://www.childrenscardiomyopathy.org. The site provides medicalinformation, coping and healing tips, a discussion forum and resource links.C.C.F. also offers a pamphlet, a family directory and private list serve,peer support, medical referrals, and assistance in research networking andfunding.Families interested in participating in the list serve can register athttp://www.childrenscardiomyopathy.org/main/join.htm or email Yue atinfo@.... YuePlease contact mito-owner with any problems or questions.

[Guest guest]

Krystena:

Thank you so much for sharing the Children's Cardiomyopathy Foundation web site. It is incredibly informative and very helpful. My son Jonah, now 7.5 yrs. of age, went into congestive heart failure at 4 months of age. He was diagnosed with dilated cardiomyopathy and subsequently diagnosed with mitochondrial myopathy due to Complex IV issues. Although we have had some scary periods, he is currently relatively stable on a suite of heart meds.

Thanks again.

Diane

Invite to The Children's Cardiomyopathy Foundation list serve

Good afternoon,I have been working with Yue, founder of The Children's CardiomyopathyFoundation as a family moderator. Unfortunately, she and her husband lostboth of their infant sons to Hypertrophic Cardiomyopathy. FOD was suspectedbut never confirmed. I am very honored to be working with her as she is avery strong and driven lady. The website she started offers a great deal ofinformation on cardiomyopathies. Just recently, she has managed to get afamily list serve going. I'd like to help her with invitations to thegrowing list of families. Both of my boys with GAII are only mildly affectedbut I know with cardiomyopathy, that status can change very quickly.The list serve is open to physicians, affected families or any familydealing with FOD's or Mitochondrial disease. There will be some scheduledtopics of the week. There will be also be weekly guests such aspediatricians, nutritionist, cardiologist,etc.. to help answer the questionscovered in the weekly topics. This week's topic is "Common CardiacMedications -Effectiveness and Side Effects". Dr. Steve Colan fromChildren's Hospital of Boston will be this week's guest. Dr. Colan is alsoan Associate Professor of Pediatrics and Chief of Non-Invasive Cardiology atHarvard Medical School. Dr. Colan is involved with the NIH funded PediatricCardiomyopathy Registry and a CCF Medical Advisor.Below is an official invitation from Yue herself and a little bit aboutC.C.F. I hope you are able to take some time to visit the webiste and becomea member. We hope to see you there.Thank you very much,Krystena sCaden 5 yrs GAII- DCMCarsen 7mths- GAII-HCM_______________________________________________This is to inform you of a new resource for healthcare professionals andfamilies diagnosed with cardiomyopathy.The Children's Cardiomyopathy Foundation (C.C.F.) is a non-profit, 501©(3) organization focused on pediatric cardiomyopathy. C.C.F. is dedicatedto the search for a cure through the support of scientific and medicalresearch. Additionally, C.C.F. promotes physician education, publicawareness, patient support, and advocacy for affected children and theirfamilies.More information on C.C.F. Is available athttp://www.childrenscardiomyopathy.org. The site provides medicalinformation, coping and healing tips, a discussion forum and resource links.C.C.F. also offers a pamphlet, a family directory and private list serve,peer support, medical referrals, and assistance in research networking andfunding.Families interested in participating in the list serve can register athttp://www.childrenscardiomyopathy.org/main/join.htm or email Yue atinfo@.... YuePlease contact mito-owner with any problems or questions.

[Guest guest]

Krystena:

Thank you so much for sharing the Children's Cardiomyopathy Foundation web site. It is incredibly informative and very helpful. My son Jonah, now 7.5 yrs. of age, went into congestive heart failure at 4 months of age. He was diagnosed with dilated cardiomyopathy and subsequently diagnosed with mitochondrial myopathy due to Complex IV issues. Although we have had some scary periods, he is currently relatively stable on a suite of heart meds.

Thanks again.

Diane

Invite to The Children's Cardiomyopathy Foundation list serve

Good afternoon,I have been working with Yue, founder of The Children's CardiomyopathyFoundation as a family moderator. Unfortunately, she and her husband lostboth of their infant sons to Hypertrophic Cardiomyopathy. FOD was suspectedbut never confirmed. I am very honored to be working with her as she is avery strong and driven lady. The website she started offers a great deal ofinformation on cardiomyopathies. Just recently, she has managed to get afamily list serve going. I'd like to help her with invitations to thegrowing list of families. Both of my boys with GAII are only mildly affectedbut I know with cardiomyopathy, that status can change very quickly.The list serve is open to physicians, affected families or any familydealing with FOD's or Mitochondrial disease. There will be some scheduledtopics of the week. There will be also be weekly guests such aspediatricians, nutritionist, cardiologist,etc.. to help answer the questionscovered in the weekly topics. This week's topic is "Common CardiacMedications -Effectiveness and Side Effects". Dr. Steve Colan fromChildren's Hospital of Boston will be this week's guest. Dr. Colan is alsoan Associate Professor of Pediatrics and Chief of Non-Invasive Cardiology atHarvard Medical School. Dr. Colan is involved with the NIH funded PediatricCardiomyopathy Registry and a CCF Medical Advisor.Below is an official invitation from Yue herself and a little bit aboutC.C.F. I hope you are able to take some time to visit the webiste and becomea member. We hope to see you there.Thank you very much,Krystena sCaden 5 yrs GAII- DCMCarsen 7mths- GAII-HCM_______________________________________________This is to inform you of a new resource for healthcare professionals andfamilies diagnosed with cardiomyopathy.The Children's Cardiomyopathy Foundation (C.C.F.) is a non-profit, 501©(3) organization focused on pediatric cardiomyopathy. C.C.F. is dedicatedto the search for a cure through the support of scientific and medicalresearch. Additionally, C.C.F. promotes physician education, publicawareness, patient support, and advocacy for affected children and theirfamilies.More information on C.C.F. Is available athttp://www.childrenscardiomyopathy.org. The site provides medicalinformation, coping and healing tips, a discussion forum and resource links.C.C.F. also offers a pamphlet, a family directory and private list serve,peer support, medical referrals, and assistance in research networking andfunding.Families interested in participating in the list serve can register athttp://www.childrenscardiomyopathy.org/main/join.htm or email Yue atinfo@.... YuePlease contact mito-owner with any problems or questions.