You have the opportunity to make an impact - act on it!!
I received this email from the CFF in Austin, TX and am posting it here for TX residents effected by cf to send a letter. The letter she mentions I have copied below her email. Please copy and paste it into a Word document and edit, print and mail!!
Dear Valued Supporter of the CF Foundation,
Next Wednesday, Feb 7th, the Texas Senate Finance Committee is holding a budget hearing on the Texas Department of State Health Services (DSHS) budget. As part of this budget hearing, CF Foundation and March of Dimes volunteers will present public testimony in support of additional appropriations to include CF in the newborn screening panel.
This type of hearing and budget request benefits from many grassroots advocacy voices. We would sincerely appreciate your support for this additional funding for newborn screening by sending the attached letter (with appropriate revisions, of course) to Senators Ogden and Zaffirini. Please feel free to call me if you have questions or would like more information.
Thank you for your support of the Cystic Fibrosis Foundation.
Best Regards,
Sandra Curphey
Executive Director
Cystic Fibrosis Foundation
Central Texas Chapter
3316 Bee Cave Rd., Ste. A
Austin, TX 78746
Ph: 512-338-1744
Fax: 512-339-9277
scurphey@cff.org
------------------------------------------
February X, 2007
The Honorable Steve Ogden, Chair
The Honorable Judith Zaffirini, Vice Chair
The Senate of Texas
Senate Committee on Finance
P.O. Box 12068
Capitol Station
Austin, TX 78711
Dear Senators Ogden and Zaffirini:
As a [PERSON WITH CYSTIC FIBROSIS/PARENT/FAMILY MEMBER/FRIEND/CAREGIVER], I write to express my strong support for additional funding to include cystic fibrosis in Texas' newborn screening panel to give children with the disease the best chance for a healthy future
Cystic fibrosis is one of the most common life-threatening genetic diseases, which causes the body to produce abnormally thick, sticky mucus that results in life-threatening lung infections and impairs digestion. When the Cystic Fibrosis Foundation was created in 1955, few children with the disease lived to attend elementary school. Today, because of research and care supported by the CF Foundation, the median age of survival for people with cystic fibrosis has tripled and is now nearly 37 years of age. Specialized care and new cystic fibrosis therapies have improved the length and quality of life for people with this disease today. By screening newborns for the disease, treatments can start earlier, which can help a baby grow and develop normally and minimize or delay complications.
[ADD YOUR PERSONAL COMMENTS HERE ABOUT YOUR OWN EXPERIENCE WITH NEWBORN SCREENING OR CF DIAGNOSIS].
Early diagnosis and treatment can increase the life expectancy of a child with cystic fibrosis, improve lung function, and reduce hospitalizations. Before newborn screening, most people with cystic fibrosis were diagnosed when symptoms of the disease caused health problems. Now, an infant diagnosed at birth will have the advantages of starting specialized treatments that were not available even a decade ago.
Texas has the 3rd largest population of patients with CF, but does not require screening at birth, as is recommended by both the Cystic Fibrosis Foundation and the Centers for Disease Control and Prevention. I urge you to add cystic fibrosis to Texas' newborn screening program, and provide funding for this important test. Thank you for helping us to continue to build hope and add tomorrows every day for my family and for all those with cystic fibrosis in the state of Texas.
Sincerely,
[YOUR NAME]
[YOUR ADDRESS]
[YOUR EMAIL/PHONE NUMBER]
I received this email from the CFF in Austin, TX and am posting it here for TX residents effected by cf to send a letter. The letter she mentions I have copied below her email. Please copy and paste it into a Word document and edit, print and mail!!
Dear Valued Supporter of the CF Foundation,
Next Wednesday, Feb 7th, the Texas Senate Finance Committee is holding a budget hearing on the Texas Department of State Health Services (DSHS) budget. As part of this budget hearing, CF Foundation and March of Dimes volunteers will present public testimony in support of additional appropriations to include CF in the newborn screening panel.
This type of hearing and budget request benefits from many grassroots advocacy voices. We would sincerely appreciate your support for this additional funding for newborn screening by sending the attached letter (with appropriate revisions, of course) to Senators Ogden and Zaffirini. Please feel free to call me if you have questions or would like more information.
Thank you for your support of the Cystic Fibrosis Foundation.
Best Regards,
Sandra Curphey
Executive Director
Cystic Fibrosis Foundation
Central Texas Chapter
3316 Bee Cave Rd., Ste. A
Austin, TX 78746
Ph: 512-338-1744
Fax: 512-339-9277
scurphey@cff.org
------------------------------------------
February X, 2007
The Honorable Steve Ogden, Chair
The Honorable Judith Zaffirini, Vice Chair
The Senate of Texas
Senate Committee on Finance
P.O. Box 12068
Capitol Station
Austin, TX 78711
Dear Senators Ogden and Zaffirini:
As a [PERSON WITH CYSTIC FIBROSIS/PARENT/FAMILY MEMBER/FRIEND/CAREGIVER], I write to express my strong support for additional funding to include cystic fibrosis in Texas' newborn screening panel to give children with the disease the best chance for a healthy future
Cystic fibrosis is one of the most common life-threatening genetic diseases, which causes the body to produce abnormally thick, sticky mucus that results in life-threatening lung infections and impairs digestion. When the Cystic Fibrosis Foundation was created in 1955, few children with the disease lived to attend elementary school. Today, because of research and care supported by the CF Foundation, the median age of survival for people with cystic fibrosis has tripled and is now nearly 37 years of age. Specialized care and new cystic fibrosis therapies have improved the length and quality of life for people with this disease today. By screening newborns for the disease, treatments can start earlier, which can help a baby grow and develop normally and minimize or delay complications.
[ADD YOUR PERSONAL COMMENTS HERE ABOUT YOUR OWN EXPERIENCE WITH NEWBORN SCREENING OR CF DIAGNOSIS].
Early diagnosis and treatment can increase the life expectancy of a child with cystic fibrosis, improve lung function, and reduce hospitalizations. Before newborn screening, most people with cystic fibrosis were diagnosed when symptoms of the disease caused health problems. Now, an infant diagnosed at birth will have the advantages of starting specialized treatments that were not available even a decade ago.
Texas has the 3rd largest population of patients with CF, but does not require screening at birth, as is recommended by both the Cystic Fibrosis Foundation and the Centers for Disease Control and Prevention. I urge you to add cystic fibrosis to Texas' newborn screening program, and provide funding for this important test. Thank you for helping us to continue to build hope and add tomorrows every day for my family and for all those with cystic fibrosis in the state of Texas.
Sincerely,
[YOUR NAME]
[YOUR ADDRESS]
[YOUR EMAIL/PHONE NUMBER]