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The problem with a great deal of the current research is that in children like Leo, predominant motor neuron loss takes place very early in their lives. When these neurons are lost/die, there is currently no treatment to bring them back. So we decided to talk to the family whose foundation, Sophiascure.org, is responsible for funding what is currently the most promising therapy, Gene Therapy. To bring it all together, treatment for SMA is very close. Stopping the disease as early as possible will provide the best outcome for the children. For the kids like Leo who have been living with the disease for some time, we have to keep searching and pursuing a true cure and the only true cure for motor neuron loss is regenerative medicine. After much prayer, we are excited to partner with Sophia’s Cure foundation for the third use of funds from Leo’s fundraiser. The $40,000 check donated to their Tap out SMA fundraiser held on 1/31/2015 was doubled by an anonymous donor to $80,000 (Amazing people are out there).
A Van of Our Dreams: our inspiration for our new Grant "The LEO Grant"
We are so fortunate to have such a huge support network of people that wanted to help Leo with whatever he needed. At that time, an accessible van was something we dreamed of Leo having. With a portion of the funds raised, Leo was able to get an this accessible which has changed our lives! We stay on the GO! Leo is able to travel safely, comfortably and with ease. What once was a difficult trip to the store or park, has turned into an every day occurrence. He has been from Wisconsin to Florida, and much in between. He has strolled through Nashville, been to one of the highest peaks on the Blue Ridge Mountains, cruised SC beaches and toured the Low Country. He has even met Mickey Mouse himself at an amazing vacation in Disney World! We are so grateful from the generous support of Leo's Pride that has made this possible, and has given Leo the opportunity to experience so many different places.
This has been the inspiration for our new Grant, Get Going, in which we will be awarding to two different families! We are so grateful for our van, and we want others to be able to experience the joy and freedom that comes with obtaining an accessible van. This year we are committing $10,000 of Go Leo Go funds to be divided between two families. One grant will go towards a family that has a child (or children) with SMA. The other grant will go towards a local family that has a child (or children) that also have a need for an accessible van! We are so excited that Leo's Pride is touching people's lives in so many ways! The grant application will be available after Go Leo Go when funds have been raised. Check back in November for details.
LOVE EVERY ONE. PROMOTING AN ALL INCLUSIVE WORLD. SPREADING AWARENESS OF SPINAL MUSCULAR ATROPHY (SMA), FUNDING RESEARCH AND SUPPORTING CHILDREN AND FAMILIES AFFECTED BY CHILDHOOD DISEASES AND DISORDERS.