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

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1. 201
   Name: Elaine O Sullivan on Jan 6, 2013

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2. 202
   Name: Jane O'Shaughnessy on Jan 6, 2013

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3. 203
   Name: Dominique Sicard on Jan 6, 2013

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4. 204
   Name: Angel Neubauer on Jan 6, 2013

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5. 205
   Name: David O' Shea on Jan 6, 2013

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6. 206
   Name: Jamie Gidman on Jan 6, 2013

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7. 207
   Name: Daniel Gidman on Jan 6, 2013

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8. 208
   Name: Connie Clarstrom on Jan 6, 2013

   Comments: Please help keep our most vulnerable children safe.

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9. 209
   Name: Anna Groshek on Jan 6, 2013

   Comments: It is critical to require these screenings at birth. So many lives will be saved. Please don't just consider the option, take action and make it mandatory in ALL hospitals. -Proud Aunt of a GA1 baby

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10. 210
    Name: Justine Inglis on Jan 6, 2013

    Comments: Early testing for my inborn error of metabolism - PKU saved my life..this must not be overlooked in the children born today..genetic testing is a must at birth

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11. 211
    Name: KatieSchifino DustynsMommy on Jan 6, 2013

    Comments: My son Dustyn is 2 yrs old. And was picked up on NBS and was diagnosed with Glutaric Aciduria Type One. Honestly, I would be lying if I said he did not have any challenges. BUT I am Thankful everyday for Newborn Screening because DUSTYN HAS A FIGHTING CHANCE!! He is able to do everything you and I can do but at his own pace. He is watched closely of nutrition and illness that both can be DEADLY OR CAUSE STROKE!! I don't think it is fear that Countries, States etc. Can decide who gets to fight and who doesn't. REALLY?! These are innocent children our future. GET IT TOGETHER Ireland and every other place that does not test for ALL Inborn Errors of Metabolism. PLEASE SAVE OUR CHILDREN.....

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12. 212
    Name: Marian Frawley on Jan 6, 2013

    Comments: Add Glutaric Aciduria Type 1 to the list of newborn screening.

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13. 213
    Name: Amanda on Jan 6, 2013

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14. 214
    Name: Justine Inglis on Jan 6, 2013

    Comments: Genetic testing saved my life. this must not be overlooked in the children of today..a small amount of pain for a huge gain..if its positive result

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15. 215
    Name: Anthony Dennehy on Jan 6, 2013

    Comments: Even one is too many...

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16. 216
    Name: Irma Esquivel on Jan 6, 2013

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17. 217
    Name: Linda Madia on Jan 6, 2013

    Comments: Every newborn should be tested

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18. 218
    Name: Jessica Banta on Jan 6, 2013

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19. 219
    Name: Orlaith Morris on Jan 6, 2013

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20. 220
    Name: Bayley Paharik on Jan 6, 2013

    Comments: I have seen children who got a second chance with life through the Newborn Screening program such as a precious boy named Dustyn. I want all children to get the same fighting chance.

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21. 221
    Name: Honey Stecken on Jan 6, 2013

    Comments: Newborn screening saves lives. Why would anyone say "no" if given the option? My daughter's rare metabolic condition was screened for and she now has-a chance at a normal life . Please don't ignore this issue!

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22. 222
    Name: Kate Markert on Jan 6, 2013

    Comments: This will make a difference in the world.

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23. 223
    Name: Peter Stroot on Jan 6, 2013

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24. 224
    Name: Sheila Buice on Jan 6, 2013

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25. 225
    Name: Levina Miller on Jan 6, 2013

    Comments: I am a 33 year old who has Glutaric Aciduria type 1 myself. Newborn screening was not screening for GA-1 when I was born- in fact, they weren't screening when my youngest brother was born in 1986. I have two brothers with GA-1 as well. All three of us are disabled because too much "poisoned" acid entered on brain and destroyed our Central Nervous system that controls our muscles. Each of us have uncontrolled, involuntary muscle movements- and yet, as smart a whip. All of this could have been prevented if NBS would have caught the disease and put on a special formula and low protein diet. In the US, the children with GA-1 are given a 95% chance of growing with the disease, but without brain damage and lead a normal lifestyle. Newborn Screening is important... as vital as the treatment itself!

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26. 226
    Name: Jo Heckel on Jan 6, 2013

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27. 227
    Name: Lynette Elliott on Jan 6, 2013

    Comments: The Newborn Screening saved my child from serious life-long complications and possibly death from GA-1. The small amount of blood it takes, along with the little cost, compared to a severely disabled child - it's a no brainer.

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28. 228
    Name: Olivia Green on Jan 6, 2013

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29. 229
    Name: An Pfister on Jan 6, 2013

    Comments: We found out that my son had a rare metabolic disorder because of newborn screening. Please expand the diseases you screen for.

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30. 230
    Name: Melissa Fry on Jan 6, 2013

    Comments: Newborn screening in the US saved my son's life and has given him a chance to live life without disabilities. Please add Glutaric Aciduria Type 1 to your screening!

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31. 231
    Name: Brittany Garza on Jan 6, 2013

    Comments: I am so sorry to hear about your baby boy. He is a beautiful baby!

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32. 232
    Name: Jen Pfister on Jan 6, 2013

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33. 233
    Name: Carla Holloway on Jan 6, 2013

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34. 234
    Name: Chelsea Mclaughlin on Jan 6, 2013

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35. 235
    Name: Tammy Cox Droll on Jan 6, 2013

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36. 236
    Name: Michelle Bergeron on Jan 6, 2013

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37. 237
    Name: Shirlee Jellin on Jan 6, 2013

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38. 238
    Name: Haylee on Jan 6, 2013

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39. 239
    Name: Karen Way on Jan 6, 2013

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40. 240
    Name: Brian Finucane on Jan 6, 2013

    Comments: peoplebeforeprofitkerry@yahoo.com

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41. 241
    Name: Jutta Görke on Jan 6, 2013

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42. 242
    Name: Deirdre Lynch on Jan 6, 2013

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43. 243
    Name: Katie Rintoul O Mahony on Jan 6, 2013

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44. 244
    Name: Tracey O'Sullivan on Jan 6, 2013

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45. 245
    Name: Dale B Withers on Jan 6, 2013

    Comments: My grandson has GA-1

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46. 246
    Name: Suzanne Howington on Jan 6, 2013

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47. 247
    Name: Yvonne Broussard on Jan 6, 2013

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48. 248
    Name: Anna Elliott on Jan 6, 2013

    Comments: Please help the newborns be able to get tested for the Glutaric ACIDURIA TYPE 1 as this is not easy on parents that find out plus the infants that need the special care.

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49. 249
    Name: Carrie Dreger on Jan 6, 2013

    Comments: I'm signing this in honor of my niece who thankfully was diagnosed early BECAUSE the screening is used in our state.

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50. 250
    Name: Stacey Doerr on Jan 6, 2013

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