Helping Gavin & Gunnar Relocate to Receive Needed Medical Care
The Save Babies Through Screening Foundation is reaching out to help Jenni OíConnor raise much needed funds for her sons Gavin (21 months) & Gunner (6 weeks), who both suffer from non classical infantile Pompe, a genetic disease diagnosed through Missouriís Newborn Screening program.
The Save Babies Through Screening Foundation is reaching out to help Jenni OíConnor raise much needed funds for her sons Gavin (21 months) & Gunner (6 weeks), who both suffer from non classical infantile Pompe, a genetic disease diagnosed through Missouriís Newborn Screening program. Gavin, was actually the first person in the US to be diagnosed with Pompe through Newborn Screening. Pompe is a rare disease that destroys muscle tissues, and the boys require bi-weekly infusions that take about 6-8 hours each. Without the infusions muscle denigration would occur resulting in complete disability or death. The Save Babies Through Screening Foundation has set a $10,000 fundraising goal, to help Jenni OíConner raise funds so that the family can relocate to North Carolina, where they will have access to a team of Pompe specialists.
Donations can be made at link below:
About the Save Babies Through Screening Foundation
Comprised of volunteers whose lives have been touched by newborn screening (NBS), Save Babies Through Screening Foundation is the only advocacy organization in the country dedicated to Newborn Screening. SBTS aims to educate parents, pediatric healthcare providers and policy makers about available comprehensive Newborn Screening, the importance of obtaining positive or other test results requiring follow-up actions within five days of birth and the importance of prompt confirmatory testing and treatment/management when required. The Foundationís mission is to ensure that every newborn in the U.S. be screened successfully, effectively and comprehensively.
Save Babies Through Screening Foundation programs are supported by public contributionís that help us deliver vital education, community services, and advocacy programs free of charge. Every gift, whether large or small, helps us protect children from the effects of these detectable and treatable disorders.
CONTACT: Save Babies Through Screening Foundation
P. O. Box 42197
Cincinnati, OH 45242
Toll Free: 1-888-454-3383
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- Contact Information
- Jill Levy Fisch
- The Saves Babies Through Screening Foundation
- Contact via E-mail
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