Jo Watson shares information about the process behind PBAC and Consumer Input

Fiona Tolich

“My ultimate goal is to get access to treatment. New Zealand is the second lowest country in all of the OECD countries to get access to the expanded access program. We will keep fighting. My motto is we leave nobody behind. “ - Fiona Tolich

Fiona is 30 year old SMA diagnosed mother from New Zealand. In this episode, she talks about how SMA made her want to advocate for the basic human right which is having access to the most modern treatment and medicine for SMA.

Listen in to our discussion about the following topics:

Fiona shares her SMA journey and how it would have been treated earlier
How scarce SMA-related information is in New Zealand back in the days
How she committed herself in advocating for access to treatment and medicine for NZ
Information and support she gained from the SMA conference

Fiona is excited to bring home more stories of inspiration and helpful information about SMA management in May 2020 at the SMA Australia conference.

Check out the links below to know more about Fiona Tolich and SMA:

Facebook - https://www.facebook.com/fiona.maccallum.3
LinkedIn - https://www.linkedin.com/in/fionatolich/?originalSubdomain=nz

Cure SMA - http://www.curesma.org/
Call us (03) 9796 5744
Email us at [email protected]
Visit our website at http://www.smaaustralia.org.au
Facebook Page: https://www.facebook.com/SpinalMuscularAtrophyAustralia

James Ian

“Music for sure saved me...and helped me break out of my shell, and started writing songs that would resonate me overcoming challenges.” - James Ian

In this episode, James talks about his touching story of how music changed his life. Having SMA was never a blocking factor for living his life to the fullest. No matter how different others see him because of his condition, he nonetheless has a great support system through his family.

Listen in to our discussion about the following topics:

James shares his SMA diagnosis journey
How music became a huge part of his life
James’ style and influence of music and his album!
How his songs in his album were created
SMA conference in Australia

Make sure to check out and support James Ian and his album called “The Labor of Love”

Song in the intro: https://www.youtube.com/watch?v=5qfaizGGG8o

Spotify: https://open.spotify.com/album/2SgQExsOK7vSi7dZOE6Ioq
Twitter: https://twitter.com/jamesianmusic?lang=en
YouTube: https://www.youtube.com/channel/UCAZW7oh7MqxihkkIj9kXBDQ
iTunes/Apple Music: https://itunes.apple.com/us/album/the-labor-of-love/1204076181


Cure SMA - http://www.curesma.org/
Call us (03) 9796 5744
Email us at [email protected]
Visit our website at http://www.smaaustralia.org.au
Facebook page: https://www.facebook.com/SpinalMuscularAtrophyAustralia

Sook Yee

"My son started painting when he's 2 years old, and we use that as a therapy." --Sook Yee.

Sook Yee is a Malaysian mom whose son has SMA. Doctors believed her son had only one year to live. Now that her son just celebrated his ninth birthday, Sook Yee finds a way to empower people in her SMA advocacy.

Sook Yee explains how she inspires parents in Malaysia with children with SMA.

Here are the highlights of her interview:

Practising the best standard of care is vital to every child’s journey with SMA
Motivating her son to enjoy his past time, such as painting, and made that a symbol to inspire others
Raising funds from his son’s paintings with the help from Unicef and Petronas in Malaysia
Taking advantage of radio and newspaper to spread information on the best standard of care for SMA
Continued search on websites and countries containing information dealing with SMA
Giving importance on attending SMA conferences to connect to people with the same experience

Sook Yee’s son has no Facebook page yet but they were able to set up a Facebook group called “Brandon Growing Up with Spinal Muscular Atrophy”.

Discover more in this podcast how Sook Yee is inspired her by her son’s happy disposition to continue her amazing advocacy of SMA. Sook Yee can’t wait to share valuable information on SMA management in May next year for SMA Australia conference.

Cure SMA - http://www.curesma.org/
Call us (03) 9796 5744
Email us at [email protected]
Visit our website at http://www.smaaustralia.org.au
Facebook Page: https://www.facebook.com/SpinalMuscularAtrophyAustralia

Al Freedman

“We’re lucky to have our kids to however long we have them, and that’s how I feel about my son… think about what our kids can do.” - Dr. Al Freedman

Having a support system from friends and families for our people who are diagnosed with SMA is the most wonderful way we can build a better community for them.

We are joined by Dr. Al Freedman who is a psychologist by profession and a loving father to his son, Jack, who has SMA.

Listen in to our discussion about the following topics:

Dr. Freedman’s inspiring story about his son, Jack (0:54/ 3:41)
What advice we can share to families with children diagnosed with SMA (1:30)
Global SMA conference by Cure SMA (3:30)
The SMA Community and Support Groups (5:02)
Upcoming SMA conference with Dr. Freedman in Australia (5:49)
Peer-to-peer discussions between kids with SMA (6:55)
Stigma around SMA (Spinal Muscular Atrophy) (8:08)
Parenting advice from Dr. Freedman (8:56)

And there are more discussions at the end of this episode!

Know more about Dr. Al Freedman at http://www.drfreedman.com/

Cure SMA - http://www.curesma.org/

Call us (03) 9796 5744
Email us at [email protected]
Visit our website at http://www.smaaustralia.org.au
Facebook Page: https://www.facebook.com/SpinalMuscularAtrophyAustralia

Zolgensma drug by Avexis brought into Australia
Roche - https://www.roche.com/research_and_development/what_we_are_working_on/neuroscience/approaching-sma.htm
Parliament date to be announced, looks like some time in August 2019 (Awareness Month)
Gala in Melbourne and Brisbane. Purchase tickets here: https://smaaustralia.org.au/get-involved/upcoming-events
Please contact us if you would like to see a Sydney event
Be SMA Aware App currently in development. Please share what are things that you are struggling with and need support with.
Currently working on a dedicated SMA Conference for May 2020 (potentially on the Gold Coast)
Newborn Screening fact sheet:
https://www.facebook.com/SpinalMuscularAtrophyAustralia/photos/a.370736359243/10157422001809244/?type=3&theater