| Winter 2003 CARES Foundation, Inc. |
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Newborn Screening in the States: Update |
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| Ohio leads the news here with the decision to mandate CAH newborn screening, beginning in April 2003! At the meeting where the decision was made, the chair of the committee read and distributed the letters written by our CARES Foundation families. Those letters moved the committee to do the right thing. Way to go Ohio families!!! New York finally began its CAH newborn screening in October after many delays. We are so pleased that they finally got the program up and running and began saving CAH babies.
While we will continue our efforts to encourage California, Utah, Oklahoma and Vermont to add CAH newborn screening, we can add Nevada and Nebraska to the list. The contracts for newborn screening services are up for renewal this year for both of these states. This means it is a prime time to begin urging those states to add CAH newborn screening. Please consider writing letters to urge these states to add CAH screening, especially if you are a resident (but all letters help whether you live in the state or not). If you can’t write, please call them. |
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| Mr. Ron Ross, Director |
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| Nebraska Department of Health and Human Services |
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| P.O. Box 95044 |
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| Lincoln, NE 68509-5044 |
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| Asst. Rachel Rezabek, email: rachel.rezabek@hhss.state.ne.us. |
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| Phone number: (402) 471-9106 |
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| Richard Raymond, M.D. |
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| Chief Medical Officer, NHHS |
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| P.O. Box 95007 |
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| Lincoln, NE 68509-5007 |
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| Asst. Roxie Anderson, email: roxie.anderson@hhss.state.ne.us |
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| Phone Number: (402) 471-8566 |
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| And to email Governor Mike Johanns, http://gov.nol.org/Johanns/mail/govmail.htm |
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| Nevada: |
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| Yvonne Sylva, Administrator, |
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| Nevada State Health Division |
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| 505 East King Street Room 201 |
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| Carson City, NV 89701 |
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| email: ysylva@nvhd.state.nv.us |
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| Phone number: 775.684.4200 |
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| And to email Governor Kenny Guinn: http://gov.state.nv.us/mailgov.htm |
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| In California, Dr. George Cunningham, the Director of the State Genetics Program, has been requesting permission to begin CAH newborn screening for a couple of years now, but Governor Gray Davis keeps denying his request based on the funding needed. Please write to Governor Gray Davis and let him know that his refusal to approve the Genetics program request to add CAH newborn screening is leading to death and/or significant trauma for our children. At least 45 children with Classical CAH are born each year in California. Please write and ask him to save CAH babies born in California! You can’t put a price tag on these babies’ lives! |
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| California: |
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| Governor Gray Davis |
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| State Capitol Building |
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| Sacramento, CA 95814 |
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| Phone: 916-445-2841 |
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| Fax: 916-445-4633 |
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| Email: governor@governor.ca.gov |
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| In Utah, the state is still considering adding diseases to their newborn screening program, but CAH is NOT under strong consideration right now. We need to change that! |
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| Utah: |
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| V. Fan Tait, M.D. |
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| Director of CSHCN |
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| Utah Department of Health |
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| 44 North Medical Drive |
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| Salt Lake City, Utah 84113 |
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| (801) 584-8239 |
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| (801) 584-8488 (fax) |
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| Asst. Adrienne Alward email: aalward@utah.gov |
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| Email Dr. Tait: ftait@utah.gov |
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| And to email Governor Mike Leavitt: governor@utah.gov. |
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