Spinal Muscular Atrophy (SMA) is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord. It is the number one genetic cause of deaths for infants, caused by a mutation in the survival motor neuron gene 1 (SMN1). It destroys nerve cells taking away a child’s ability to walk, eat or breathe. Without this critical gene, nerve cells do not properly function, then atrophy and die, leading to debilitating and often fatal muscle weakness. One in 50 Americans is a genetic carrier of SMA and 1 in approximately 10,000 babies are affected. Every year, Convaid and R82 show support for Cure SMA, the primary non-profit funding SMA research. Teams on East and West Coast join together to “push purple” throughout the month of August, the moniker color of the Cure SMA movement. The team uses #CureSMA hashtag in social media, shares facts about SMA on social media and wears purple.
Cure SMA is also the beneficiary of on-going planned giving by Convaid that will extend to the R82 brand in 2017.
“We are committed to bringing best-in-class products and tools to the SMA community and to expansion of our planned giving programs. We are also strong advocates for families living with SMA. Our Convaid Trekker, R82 Stingray and Convaid Carrot 3 car seat make a big difference in helping families living with SMA to go places and provide the greatest possible freedom,” said Nanneke Dinklo, Director, Marketing. Convaid and R82 are dedicated to developing products and services for the SMA population in the areas of:
By participating in fundraising and awareness-building events through North America, Convaid and R82 support Cure SMA’s research program that studies the biology and causes of SMA. This results in clinical trials that seek to find treatment and cure for SMA, investing in a diversity of approaches. Currently, the Cure SMA drug pipeline has identified four possible treatment targets along with therapeutic approaches:
- Replacement and correction of the faulty SMN1 gene
- Modulation of the low functioning SMN2 “back-up gene”
- Neuroprotection of the motor neurons affected by loss of the SMN protein
- Muscle protection to prevent or restore the loss of muscle function in SMA
Earlier this summer, Convaid and R82 attended the Cure SMA National Conference as Platinum Exhibitors where Convaid donated a Convaid Trekker lightweight, folding wheelchair as part of its planned giving. Cure SMA’s Clinical Care program actively seeks to identify clinical solutions that affect daily life for people living with SMA, from breathing, nutrition, mobility, bathing & toileting, safe transportation and other functions, for which Convaid and R82 offer many best-in-class products. Convaid and R82 are committed to assist in the furtherance of the organization’s clinical care and educational improvements.
An expanded plan of participation in 2016 and 2017 in national Cure SMA Walk-n-Rolls throughout North America will help advance awareness of SMA. “Our work would not be possible without people and organizations that support us with planned giving and building awareness for Cure SMA. Cure SMA friends and families participate in 300 fundraising events throughout the country, bringing the entire SMA community closer to a treatment and cure. Convaid’s recent donation of a Convaid Trekker to our Chicago-based loaner pool has proven highly beneficial to our community. We look forward to working with Convaid and R82 in 2017,” said Sarah Rodriguez, Cure SMA Officer, Corporate Sponsorship and Central Eastern Territory Chapters, Family Support & Development Dept.
The Convaid and R82 brands offer pediatric products typically prescribed to individuals with mild to moderate involvement of the following conditions: Cerebral Palsy, Down Syndrome, Duchene Muscular Dystrophy, Spinal Muscular Atrophy, Spina Bifida, Osteogenesis Imperfecta, Traumatic Brain Injury, Spinal Cord Injury, Cystic Fibrosis, Mitochondrial Disease, Metabolic Diseases, and Sensory Processing Disorders, among others.