Hope for SMA is a 501 (c) 3 Charitable Organization that exists to FIND, GET & GIVE HOPE to children suffering from Spinal Muscular Atrophy (SMA):
- SMA is the #1 Genetic killer of infants under the age of two
- 1 in 40 people unknowingly carry the gene responsible for SMA
- 1 in 6,000 births are affected or 59 babies daily will be diagnosed with SMA
- SMA is a Pan-Ethnic disease and does not discriminate based on race, ethnicity or gender
- It is a motor neuron disease affecting voluntary muscles that are used for activities such as head and neck control, swallowing, walking and breathing
- Intellectual activity is normal and children with SMA are bright and sociable
Hope for SMA is a Nonprofit Public Benefit Corporation organized for the benefit of children suffering from serious illnesses and diseases, including support, rehabilitation, education, furthering scientific research and increasing community awareness. This corporation is operated exclusively for charitable, educational and scientific purposes within the meaning of Section 501 (c) 3 of the Internal Revenue Code.
Hope for SMA is governed by a Board of Directors. There are 10 directors that oversee operations, please see attachment for more information on HOPE for SMA’s Board of Directors.
Family Support - Our programs provide the provision of goods, services and other funds to critically ill children and their families in need of support. Recipients are selected on a case-by-case basis and must be approved by the board of directors. Recipients are selected based on the information they provide the corporation.
Community Awareness – It is our mission and mandate to educate the public about Spinal Muscular Atrophy. We host two major fundraisers a year that allow us to educate attendees about SMA. We use social media outlets, radio and T.V. programs to educate and inform the community on SMA and how to proceed with carrier testing. The Board of Directors oversees all fundraising and awareness campaigns to ensure the goals and objectives are being met with each activity.
Scientific Research – Hope for SMA gifted in excess of $40,000 in the first year of its existence to the Gene Therapy Program at Nationwide Children’s Hospital. There is a viable cure for SMA that has recently met FDA approval. We are excited that in the first quarter of 2015 the first ever human clinical trial began with this potential cure. It is very possible that within the next two years SMA will be cured! Until then, we need to assist families that battle this disease on a daily basis and find the babies that will need this therapy. SMA as it stands is not regularly tested for, but we are working with the medical community to standardize the testing of this baby killer disease.
The economy continues to take its toll on our nation and it is a double blow to families that are already trying to keep up with the high costs of medical expenses and 24 hour care for their terminally ill children. TOGETHER we can assist the families that are living out every parent’s worst nightmare, save other families the fate of SMA by educating them on this disease and stand proud the day the announcement comes that SMA is cured because we played a part in making that possible.
Julie Prendiz, President
HOPE for SMA