SMA AWARENESS MONTH - News / Update | We Care Journey

AUGUST IS SMA AWARENESS MONTH

SMA AWARENESS MONTH

Hey, do you know that August is declared as SMA Awareness Month worldwide?

As this month is special to us, we would like to share many facts and relevant information about SMA to spread awareness and increase public’s knowledge on SMA and our community. Stay tune to find out more. Keep updated on our campaign to make sure you don’t miss anything.

You can help us make an impact by sharing our post and donate to help SMA families. Your small act will give big impact to us! Don’t forget to follow us on our social media for more interesting post. You also can visit our website: www.wecarejourney.org.

Facebook: WeCareJourney
Twitter: WeCareJourney
Instagram: wecarejourney_sma

#AugustSMAmonth
#SMAawarenessmonth
#WeCareJourney
#thinkSMAllactBIG

SHOW YOUR SUPPORT BY

Want to be a part of us but not sure how? Here is how you can contribute:

1. Donate

You are welcome to donate for our SMA families. Your donation will help us to extend our outreach and awareness, add more critically needed service and care, provide family support services for SMA families and get orphan drugs that stop SMA. Your contribution, BIG or SMALL makes a huge difference! Thank you! https://wecarejourney.org/make-an-impact

2. Volunteer

We love our volunteers! You are welcome to join our community of volunteers, from hand-writing thank you notes to helping out at special events.

3. Stay connected

We also pleased to have you to join our supporter Facebook page, our Instagram account and Twitter account to communicate with each other and our team. We post updates and would love to hear your feedback and ideas.

4. Fund Raise for an SMA event

Our efforts in raising funds and awareness on SMA by organizing an event would be impossible without your help. Your contribution helps patients and families with SMA to get closer to the treatment, information and resources they need.

#AugustSMAmonth
#SMAawarenessmonth
#WeCareJourney
#thinkSMAllactBIG

SMA AWARENESS FACT 1

Spinal Muscular Atrophy (SMA) is a progressive, genetic disease that takes away the ability to move, walk, eat or breathe without assistance.

#SMAAwarenessMonth
#AugustSMAMonth
#thinkSMAllactBIG
#WeCareJourney

SMA AWARENESS FACT 2

1 in 50 is a carrier of SMA defective gene.

Imagine having 1000 friends on Facebook, 20 of them could be the carriers including YOU

Take one step ahead and get tested today.

Ask your gynae how to get tested.

Please share this message.

#SMAAwarenessMonth
#AugustSMAMonth
#thinkSMAllactBIG
#WeCareJourney

SMA AWARENESS FACT 3

If both parents are carriers of SMA, there's a 25% chance that their child will have SMA.

A family could have more than one child that born with SMA.

#SMAAwarenessMonth
#AugustSMAMonth
#thinkSMAllactBIG
#WeCareJourney

SMA AWARENESS FACT 4

SMA is known as #1 genetic killer of small ones.

In Malaysia, babies die before 2 years old without a treatment.

They deserve to have a longer and healthy life as yours. #pleasesavethechildren

#SMAAwarenessMonth
#AugustSMAMonth
#thinkSMAllactBIG
#WeCareJourney

SMA AWARENESS FACT 5

Every month, at least two SMA babies are born in Malaysia.

It could be more that 24 babies born with SMA every year.

Isn’t this worrying?

Please help to share this to spread the awareness.

#SMAAwarenessMonth
#AugustSMAMonth
#thinkSMAllactBIG
#WeCareJourney

SMA CANDLE LIGHTING

Join us and SMA families around the country to light a candle in remembrance of SMA Angels who have passed away and to honor SMA Warriors who are living with SMA, on this Friday, 16 August 2019.

Take a picture and share with us by commenting on this post to show your support.

#SMAAwarenessMonth
#AugustSMAMonth
#thinkSMAllactBIG
#WeCareJourney

SMA AWARENESS FACT 6

There are 4 types of Spinal Muscular Atrophy (SMA).

It vary depends on their symptoms and age of onset of the condition.

Please help to share this to spread the awareness.

#SMAAwarenessMonth
#AugustSMAMonth
#thinkSMAllactBIG
#WeCareJourney

SMA AWARENESS FACT 7

Have a child? Check if your child has this symptoms.

These are signs shown by SMA patients which cause limitation in their mobility.

Please help to share this to spread the awareness.

#SMAAwarenessMonth
#AugustSMAMonth
#thinkSMAllactBIG
#WeCareJourney

FREQUENTLY ASKED QUESTION 1

Can people with SMA achieve a normal lifespan?

Some forms of SMA shorten lifespan.

The average lifespan of an SMA patient depends of the age of
onset of the condition.

The later the age of onset, the higher the likelihood
of achieving a normal lifespan.

#SMAAwarenessMonth
#AugustSMAMonth
#thinkSMAllactBIG
#WeCareJourney

FREQUENTLY ASKED QUESTION 2

Why can't SMA patient cough?

When someone has a breathing problem that causes mucus production, the human body will usually develop a strong cough in order to clear the airways of those secretions.

The problem for people with SMA is that their muscles are too weak for a strong cough.

If the cough is not strong enough, that mucus will be trapped in the lungs and breathing is much more difficult.

#SMAAwarenessMonth
#AugustSMAMonth
#thinkSMAllactBIG
#WeCareJourney

FREQUENTLY ASKED QUESTION 3

What are major challenges faced by people with SMA?

Weakness of the respiratory muscles is potentially the most serious issue faced by SMA patients. Ventilatory assistance is usually needed to facilitate breathing.

Swallowing and chewing muscle may also be affected. Those facing with this difficulty would often require feeding aids.

#SMAAwarenessMonth
#AugustSMAMonth
#thinkSMAllactBIG
#WeCareJourney

SMA AWARENESS FACT 8

Do you know how much is the cost of having an SMA child?

These are what are needed for every SMA child.*

These have not include the psychosocial impact of having a child with SMA.

Their journey is never easy. Please share this information.

*WeCareJourney assist with flu vaccination, wheelchair, standing frame, suction machine, cough assist machine and nebulizer

*Varies by each individual

Donate to help us help more patients.
https://wecarejourney.org/

#SMAAwarenessMonth
#AugustSMAMonth
#thinkSMAllactBIG
#WeCareJourney

SMA AWARENESS FACT 9

The little things that we take for granted in life are everything that SMA patients wish for.

Therefore, the treatment is important for SMA patients to improve their quality of life.

Please share to help them get access to the right treatment.

#SMAAwarenessMonth
#AugustSMAMonth
#thinkSMAllactBIG
#WeCareJourney

SMA AWARENESS FACT 10

Breathing aids are usually required for those with SMA Type I and II.

This includes Bilevel Positive Airway Pressure (BiPAP) and Cough Assist Machine (CAM).

Aside from that, regular chest therapy and breathing exercise are recommended to improve lung function.

There are people who struggle to afford these assistive equipments.

You may contribute to help at https://wecarejourney.org/.

#SMAAwarenessMonth
#AugustSMAMonth
#thinkSMAllactBIG
#WeCareJourney

Ooops!

Generic Popup