Getty Owl Foundation has had another fantastic year and impact on Spinal Muscular Atrophy (SMA)! We have been able to do so much thanks to the active participation of friends, family, SMA families, and SMA Warriors. None of this would be possible with the generous support of our donors and supporters.
Getty Owl Foundation has helped greatly improve the lives of SMA children and families. We have helped lessen the devastation, burden, and learning curve for newly diagnosed families. Familes have ready access to a network of other informed, experienced, and supportive SMA familes. They have critical medical literature at their fingertips and telephone support at any time of day. We help families advocate for their medical needs when medical professionals and health insurance carriers fail to fully apprciate the nuances and full spectrum of SMA management and care. We have helped families secure medically necessary equipment and supplies that are and often unavailable to families through their doctors or insurance.
We help give familes hope in the face of SMA, a cruel and harsh disorder — the #1 genetic killer of young children. We offer SMA families our love, knowledge, and support, and show by example, that SMA children can leading long, fruitful, and happy lives with proper care.
Our major fundraiser is the Getty Owl Run/Walk. Our 2013 event was fantastic, bringing the community together in a warm show of support and solidarity. The event and our work raises much needed SMA awareness, and encourages those planning families to seek genetic counseling and SMA carrier testing.
Through your fundraising support, we recently made a $10,000 Getty Owl Grant to fund SMA Gene Therapy research, which will begin human clinical trials in just a few months! A cure for SMA very well could be in sight, and your support can help make it a reality.
Another amazing achievement in the SMA Community this year is the passage of the National Pediatrictional Pediatric Research Network Act (NPRNA), signed into law just this month. Through the National Institutes for Health (NIH), the NPRNA creates a research network for SMA and other rare children’s diseases. This collaborative network promises to move SMA research ahead even faster. We deeply appreciate all the hard work and dedication of all the SMA warriors and sister organizations who lead the way to push this through.
We look forwrard to more great things in 2014, but we need your help to keep the momentum going. Today is the last day to make 2013 tax-deductible donations to Getty Owl Foundation, a tax exempt 501(c)(3) chairtable organization.
Together we can win!
Please donate today and thank you for your continued support!