Rare Daily Staff
Besides funding SMA research and care, Cure SMA provides thousands of individuals and families with vital family support and resources that help people navigate life with spinal muscular atrophy (SMA). In addition to its current support programs, Cure SMA has just launched a new program specifically for teens and adults living with SMA.
SMA is caused by a mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein that is critical to the function of the nerves that control our muscles. Without it, those nerve cells cannot properly function and eventually die, leading to debilitating and often fatal muscle weakness. SMA affects approximately 1 in 11,000 babies, and about 1 in every 50 Americans is a genetic carrier. SMA can affect any race or gender.
The new program is a support package filled with helpful items that have been recommended by adults living with SMA to make everyday life easier. They also help those living with SMA to gain independence with certain tasks they might not be able to do on their own. These items include:
- Medical Fleece Ease Sheepskin – The natural health benefits of sheepskin can provide a much-improved quality of life to those who are in one position for long periods, helping to relieve bed sores and pressure points. The Fleece Ease draws perspiration away from the skin, then slowly releasing as evaporation, so the body feels cool in the summer and warm in the winter.
- Amazon Echo Plus – The Echo Plus has a built-in hub that seamlessly connects and controls compatible smart devices such as light bulbs, door locks, switches, and plugs.
- Telescopic Back Scratcher – This back-scratcher telescopes closed to only 6-1/2″ long for easy portability but it telescopes open to a full 20-1/4″.
- Long Grabber Reacher Tool – The 26” long grabber reacher is made of lightweight aluminum with ergonomic handle trigger design. A magnetic tip helps pick up small objects and it is fitted with a post to assist with dressing.
- Gooseneck Phone/Tablet Mount – This flexible stand allows you to watch your device hands free or to mount it in an accessible location. The device-holding deck rotates 360-degrees enabling all possible angles one may need.
- Etekcity Remote Control Outlet Switch Kit – These remote control outlets work from as far as 100 feet and are great for on/off switching of hard-to-reach appliances and devices. They operate household appliances from across rooms and are a great assistant for those with SMA.
- EZ-Shampoo Hair Washing Basin – This hair washing basin is perfect for traveling when there isn’t access an accessible bathroom. Hair can be refreshed without having to leave the bed.
- Neck & Shoulder Heating Pad – This body comfort heating pad can be used in many ways to warm your neck and shoulders, and help relieve stiffness, knotted muscles, tightness and inflammation.
- Sisu Positioner Pillow – The contouring characteristics make this a perfect support pillow. The technology within this pillow molds to the shape of your body, reducing discomfort caused by long periods of sitting or lying down.
Cure SMA will be provide any teen and adult diagnosed with SMA, who lives in the United States, with this brand-new resource as soon as they request it at no charge. All they have to do is go to its website.
This program is made possible by funding from Biogen.
November 8, 2018