5 Ways Cure SMA Offers Help to Newly Diagnosed SMA Families
Cure SMA is a non-profit organization committed to helping patients and the family of people with spinal muscular atrophy (SMA). When a patient is diagnosed with SMA, it can be an extremely difficult time for their family. They’re often confused, uncertain about the future and have no idea where to turn for advice and support.
Cure SMA offers newly diagnosed families practical and emotional support, with a variety of resources that can help families come to terms with the diagnosis and begin to make plans for the future.
Here are just a few examples of the services they provide for SMA families:
The organization can send out information packages which explain the condition in full, what to expect as the disease progresses, the treatment options available, latest research information, and practical advice for the day-to-day management of SMA.
Family Support Staff
Family support staff are there to help with the initial hurdles of coping with the diagnosis and guide families through some of the information and resources available. They can offer both practical and emotional support.
Care packages contain important information about SMA and local resources families can take advantage of and a ring binder they can use to store all relevant information. It also includes age-appropriate toys for the patient based on their type of SMA that have been recommended by other parents.
Local SMA Chapters
For more local support, the SMA has chapters all over the U.S. which regularly hold events and meetings. Joining your local chapter is a great way to meet other SMA families and really tap into the support and friendship they offer.
Some of the specialized equipment you may need for your child is expensive and difficult to come by. Cure SMA has an equipment pool where medical equipment can be loaned free of charge to families who need it.
SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.