Funding for a National Screening Program For SMA
Fund a National Screening Program for carrier testing for Spinal Muscular Atrophy (SMA) within Australia
This National Awareness Campaign will also need educate the
- General Public
- GP Doctors
- Obstetricians / Gynaecologists
in regard to the chronic disease Spinal Muscular Atrophy, so that people (couples) are aware that testing is available and have the choice whether to decide to have genetic testing for this disease. We can prevent this disease through this program.
Spinal Muscular Atrophy (SMA) is the most severe form of degenerative motor neurone disease. Muscles degenerate and become weaker and weaker over time. Depending on the severity of SMA some children never sit or stand unaided, never get to run around and play. Breathing can be impaired and pneumonia can be fatal.
Children with SMA appear normal in every way, except are extremely weak. They are bright and alert and very interested in people and what is going on around them.
i) Type 1 Number One genetic Killer of children under 2 years of age.
ii) Type 2/3 has a limited life span on the sufferer.
iii) SMA is a genetic inherited recessive disease.
iv) More babies die from SMA than any other disease.
v) The gene mutation that causes SMA is carried by 1 in 35 people.
vi) SMA is estimated to occur in nearly 1 out of every 6,000 live births.
vii) Importance of Genetic Testing Pre-Pregnancy
viii) Couples (if both carriers) have 1 in 4 chance of giving birth to a baby with SMA.
ix) There is currently no standardized treatment and no cure for SMA.
x) SMA is a muscle wasting disease and not only wastes all the external muscles (use of arms and legs) but internal muscles (like breathing)
xi) Information booklets available to general public in all medical
practitioners consulting rooms.
Awareness of the disease- Spinal Muscular Atrophy and its effects along -with the availability of Genetic Testing to couples pre-conception would:
1) Enable a couple to evaluate the risk of giving birth to a SMA baby.
2) Give a couple choices as to methods of conception
Please note: This is the official petition generated by the Spinal Muscular Atrophy Association of Australia Inc. in conjunction with and supported by Genetic Health Services Victoria (situated at the Royal Children's Hospital Vic) and the SMILE Foundation. For further details or any queries please contact the Association.
www.smaaustralia.com
Fund a National Screening Program for carrier testing for Spinal Muscular Atrophy (SMA) within Australia
This National Awareness Campaign will also need educate the
- General Public
- GP Doctors
- Obstetricians / Gynaecologists
in regard to the chronic disease Spinal Muscular Atrophy, so that people (couples) are aware that testing is available and have the choice whether to decide to have genetic testing for this disease. We can prevent this disease through this program.
Spinal Muscular Atrophy (SMA) is the most severe form of degenerative motor neurone disease. Muscles degenerate and become weaker and weaker over time. Depending on the severity of SMA some children never sit or stand unaided, never get to run around and play. Breathing can be impaired and pneumonia can be fatal.
Children with SMA appear normal in every way, except are extremely weak. They are bright and alert and very interested in people and what is going on around them.
i) Type 1 Number One genetic Killer of children under 2 years of age.
ii) Type 2/3 has a limited life span on the sufferer.
iii) SMA is a genetic inherited recessive disease.
iv) More babies die from SMA than any other disease.
v) The gene mutation that causes SMA is carried by 1 in 35 people.
vi) SMA is estimated to occur in nearly 1 out of every 6,000 live births.
vii) Importance of Genetic Testing Pre-Pregnancy
viii) Couples (if both carriers) have 1 in 4 chance of giving birth to a baby with SMA.
ix) There is currently no standardized treatment and no cure for SMA.
x) SMA is a muscle wasting disease and not only wastes all the external muscles (use of arms and legs) but internal muscles (like breathing)
xi) Information booklets available to general public in all medical
practitioners consulting rooms.
Awareness of the disease- Spinal Muscular Atrophy and its effects along -with the availability of Genetic Testing to couples pre-conception would:
1) Enable a couple to evaluate the risk of giving birth to a SMA baby.
2) Give a couple choices as to methods of conception
Please note: This is the official petition generated by the Spinal Muscular Atrophy Association of Australia Inc. in conjunction with and supported by Genetic Health Services Victoria (situated at the Royal Children's Hospital Vic) and the SMILE Foundation. For further details or any queries please contact the Association.
www.smaaustralia.com
Please help our children.This is an unfair disease that they never asked for.They deserve a chance at life too.
In memory of my niece Brooke Amelia.
For my sweet baby Garrison and his friends!
For Nik, Son, Jonathon and Oliver
In memory of Andrea and her playmate in heaven, Lilly.
For gorgeous Gemma.
As a parent,I believe it is important to be able to screen for all types of illnesses, disabilities in unborn foetuses. The thought of finding out that your baby is sick or has a disability at a late stage off the trimester would be unbearable. Please supply funding for this very important program.
One of my dearest friends lost her daughter to SMA 5 months ago. Nobody should have to go through that pain when something can be done to diagnose genetic carriers.
I see first hand the devastation wreaked by SMA. Everyone deserves to be offered information about this illness so they can make informed reproductive decisions BEFORE the birth of their first child with SMA. Carrier testing for SMA is about promoting choice.
My family has suffered a terrible loss from this disease, my grandson Brodie was only 5months old when he died from SMA. My daughters first child, our first grandchlid. We had never even heard of this disease before he was diagnosed, and there is a definate need for more education on this. It would help to prevent a lot of the unnecessary heartbreak so many parents and family go through.
Please fund a screening program for spinal muscular atrophy in Australia and help to educate the public about this most horrible disease Thank you
Please take this issue seriously.
The poor little babies need all the help they can get!
In Luci's memory
I think there should definitely be a national screening program made available so that couples have a choice to decide whether or not they want to have genetic testing for the disease. The statistics show that it's long overdue.
