Too Rare To Care @ newborn screening for glutaric aciduria type 1

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1. 101
   Name: Deborah Herndon on Jan 5, 2013

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2. 102
   Name: James Brett on Jan 5, 2013

   Comments: A necessity in this day and age

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3. 103
   Name: Kate Sicard on Jan 5, 2013

   Comments: We do have the newborn screening here in WI, USA and I am very thankful that we do. Our daughters 3rd child Larkin was diagnosed with this at birth and takes levocarnitine 3 times a day and a special formula called Glutarade 3 times a day and is monitored very closely. She is now 3 months old and doing very well. It is imperitive that this be caught as soon as possible to prevent brain damage to these kids. They are the future for your country.

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4. 104
   Name: Jaimie Howard on Jan 5, 2013

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5. 105
   Name: Sheila Bulbeck on Jan 5, 2013

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6. 106
   Name: Joanne Oshea Brabazon on Jan 5, 2013

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7. 107
   Name: Anonymous Facebook user on Jan 5, 2013

   Comments: This is a great way to know in advance what we should look for and have better knowledge of what to expect to help parents with their child/children's health.

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8. 108
   Name: Arsene Gangama on Jan 5, 2013

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9. 109
   Name: Gwen Abele on Jan 5, 2013

   Comments: Too many babies born with GA I are dying from neglect in the first weeks of life. Please put GA i on the NBS list!!

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10. 110
    Name: Nigel Burrell on Jan 5, 2013

    Comments: Come on Ireland (and indeed Cyprus!) pull yourself into line with other countries. No child should die or suffer disabling illness because of the lack of a simple test.

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11. 111
    Name: Clare Costello on Jan 5, 2013

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12. 112
    Name: Richard Murphy on Jan 5, 2013

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13. 113
    Name: Nancy J. Lucas on Jan 5, 2013

    Comments: Please save the children by adding this newborn screening!

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14. 114
    Name: Anonymous on Jan 5, 2013

    Comments: This metabolic disorder is the difference between life and death. Children that are born with this and isn't diagnosed and treated very soon could die.

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15. 115
    Name: Sharon O Sullivan on Jan 5, 2013

    Comments: Totally agree this disease needs to be screened for at birth.

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16. 116
    Name: Patricia Martin-Simmons on Jan 5, 2013

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17. 117
    Name: James Pembroke on Jan 5, 2013

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18. 118
    Name: Richard Martin on Jan 5, 2013

    Comments: Never stop fighting. GA1 needs to be screened everywhere to help babies.

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19. 119
    Name: Raquel Licup on Jan 5, 2013

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20. 120
    Name: Marsha Alguire on Jan 5, 2013

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21. 121
    Name: Bella O'Flaherty on Jan 5, 2013

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22. 122
    Name: Haylee Silkett on Jan 5, 2013

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23. 123
    Name: Hazel Robertson on Jan 5, 2013

    Comments: 16 years to late....

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24. 124
    Name: Hazel Robertson on Jan 5, 2013

    Comments: 17 years to late....

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25. 125
    Name: Kristin Russell Perkins on Jan 5, 2013

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26. 126
    Name: Louise Keenan on Jan 5, 2013

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27. 127
    Name: Jeramie Kozlowski on Jan 5, 2013

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28. 128
    Name: Brenda Winiarski on Jan 5, 2013

    Comments: Please add GA1 to your newborn screening protocol. With early diagnosis, lives will be saved.

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29. 129
    Name: EmmaJane Kelly Tomlinson Keenan on Jan 5, 2013

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30. 130
    Name: Melanie Ruff on Jan 5, 2013

    Comments: My daughter almost died at 17 months from MCAD because it was not part of newborn screening in Texas at the time of her birth. She is fortunate that she does not have lasting complications from her first metabolic crisis in which her blood sugar dropped to 12. Technology has make it possible to give children with metabolic disorders a chance. Please consider adding GA1 to the nbs program.

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31. 131
    Name: Nancy Genn on Jan 5, 2013

    Comments: My daughter also was not picked up as a newborn. She is now 17, struggling every day of her life. Please add GA 1 to the newborn screening.

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32. 132
    Name: Lynn Terbey on Jan 5, 2013

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33. 133
    Name: Anonymous on Jan 5, 2013

    Comments: Please consider adding this metabolic disorder to the newborn screening.

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34. 134
    Name: Orla Dennehy on Jan 5, 2013

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35. 135
    Name: Liam Quinn on Jan 5, 2013

    Comments: keep up the good work

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36. 136
    Name: Anonymous on Jan 5, 2013

    Comments: please help all the children!

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37. 137
    Name: Anna White on Jan 5, 2013

    Comments: I am a 35 year old adult living with PKU. This was ONLY caught due to the newborn screening and I thank my lucky stars that this test was required at my birth. This screening should be mandatory EVERYWHERE.

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38. 138
    Name: Angel Hall on Jan 5, 2013

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39. 139
    Name: Julie Duke on Jan 5, 2013

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40. 140
    Name: Krista Ramsey on Jan 5, 2013

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41. 141
    Name: Paula Kozlowski on Jan 5, 2013

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42. 142
    Name: Anonymous on Jan 5, 2013

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43. 143
    Name: Norma Bartlett on Jan 5, 2013

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44. 144
    Name: Maria Corena McLeod, PhD on Jan 5, 2013

    Comments: We need to expand NBS in countries that are only doing a few disorders. Please support this petition to expand NBS in Ireland.

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45. 145
    Name: Regina Dennehy on Jan 5, 2013

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46. 146
    Name: Debra Davila Allen on Jan 5, 2013

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47. 147
    Name: Linda Gannon on Jan 5, 2013

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48. 148
    Name: Niamh O'Sullivan on Jan 5, 2013

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49. 149
    Name: Jen Cardamone on Jan 5, 2013

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50. 150
    Name: Kieran McNulty on Jan 5, 2013

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