August is SMA Awareness month!

Write to your Member of Parliament this month to help raise awareness of SMA and the importance of access to funded treatments.  Click here to download a letter template (word format) to help you get started with your letter.

Visit the parliamentary website to find MP contact details. https://www.govt.nz/browse/engaging-with-government/members-of-parliament/

SMA Member Reference Group

The first ever Member Reference Group for Spinal Muscular Atrophy (SMA) met at our National Office in Auckland on Tuesday 12th December 2017. Reference group members are Tania Woodmass, Brent Walker, Emily Beswick, Fiona Tolich, Jo Truscott, Belinda Old and Anna Sutherland.

The group was formed to help MDANZ identify priorites specific to families with SMA and for the benefit of the SMA community.  The group is being led by Miriam Rodrigues supported by the team at National Office.

The priorities that have been set for the next three years are: 

  1. Achieving funded access to Nusinersen (Spinraza) for New Zealanders with SMA
  2. Developing resources and working with stakeholders to ensure better and more timely supports for newly diagnosed families
  3. Creating informal opportunities for peer to peer networking in the New Zealand SMA community
  4. Support other SMA related initiatives being undertaken by MDANZ, or a related stakeholder (e.g. researchers )

Terms of reference for this group can be downloaded here.

To read more about SMA, please refer to our neuromuscular conditions section.

Community newsletters

Each time the reference group meets, they will endeavour to pull together latest information into a newsletter that can be shared throughout the community.

Click here for the July 2018 Newsletter.

Click here for the March 2018 Newsletter.

Click here for the December 2017 Newsletter.

SMA family day - Hamilton April 2018

A huge thank you to all of the families who ventured out to Hamilton on a very rainy April day, to meet with others and hear from an exciting range of speakers.  We are grateful to Biogen, who funded this event.  Here is a picture of members of our reference group, taken on the day.  Thanks Jo for coming all the way from Christchurch, to participate and share this experience with our community.

Cure SMA Conference June 2018

Reference Group members Fiona Tolich and Anna Sutherland were supported by MDANZ and SMA Australia to attend the Cure SMA Conference held in Dallas Texas this June.   Fiona and Anna can't wait to share information from this life-changing event with the NZ community.

Click here for the first report from Fiona Tolich, following her attendance at the conference.  This is the first of a number of reports to come! 

Zacs play day

We are delighted to have free copies of an illustrated children's book called Zacs Play Day to give away to families, schools and kindergartens, who wish to raise awareness of SMA for children and young people in their communities.  Again, we thank Biogen for sponsoring these books.

Please contact Miriam Hanna at MDANZ's national office on 0800 800 337, or email [email protected] to request a copy.