Thursday, July 05, 2018

e-newsletter July 2018

e-newsletter July 2018

“Alone we can do so little; together we can do so much” Helen Keller

Greetings! I have another full newsletter for you today. There is so much happening in the MS Community – always something new to learn, share and take part in. I hope there is something here of interest to you.

1.   Advocating PHARMAC for increased access to MS treatments
2.   Invitation from AUT to take part in research to develop an APP – Ann Seizer
3.   MS fundraising adventure across 7 continents – be part of this special event!
4.   Brain Day – 21 July
5.   July Social event
6.   Life Buoy for MS – an overwhelming success!
7.   Street Appeal 2018 – Can you spare a few hours?
8.   Payroll giving and regular giving
9.   Ways of connecting with an MS Field Worker


1. Advocating PHARMAC MSNZ is an independent MS Society based in Christchurch. Their mission is to advocate nationally for people living with MS in NZ to have access to first world treatments. There have been some exciting developments lately with MSNZ advocating strongly with PHARMAC for changes to the access criteria for MS therapies. Read the full submission made to PHARMAC.

If you have had difficulties in accessing the funded DMTs (Disease Modifying Therapies), or if you have had to stop treatment due to the current criteria, or if you have experienced lengthy delays in getting treatment, MSNZ would be very interested to hear your story. You can contact Amanda at the MSNZ office directly at amanda@msnz.org.nz or by calling 0800 67 54 63.

If you would like to discuss any issues you have experienced with your Field Worker please feel free to call or text them. They can be reached through their mobiles or through the office on 09 845 5921.


2. Invitation to take part in research to develop an APPAUT researchers are developing an app with the aim of supporting people to manage the ongoing consequences of injury or illness and to support them to live and be well.

They are keen for people living with the long-term impact of injury or illness to inform the development phase of the app. If you are willing to be part of one or more informative focus groups (to ensure the app meets the needs of potential users) and/or willing to test the app (or parts of the app) during its development and following completion, AUT would love to hear from you. Click here for more information.

3. MS fundraising adventure across 7 ContinentsCheryl has MS and is passionate about running. Last year she went on a 12 month journey to run 7 marathons on 7 continents. Some of you may have met her when she was in NZ. She is a true inspiration.

For her next adventure she is looking to have virtual runners or walkers or swimmers on all 7 continents in conjunction with the Detroit Marathon on the 21st of October. For us, in NZ it would mean doing something on Monday the 22nd of October, since we are almost a day ahead of them!

It would be great to have NZ as part of this virtual team, but we need someone to organize it. Even if just one or two people got together to do a walk or run to support the rest of the team it would be so very much appreciated.

Hanger Clinic is sponsoring the team shirts and Cheryl will send one out to participants before the 21st of October. The Detroit Marathon also has some medals that they can send to virtual participants! It would be good if everyone who participates gives a donation to MS Auckland or encourages their family or friends to donate through our Givealittle page - https://givealittle.co.nz/donate/org/msaucklandregion

Are you up to leading this adventure for the NZ team? It doesn’t matter if the team is only one or two people! It will involve corresponding with Cheryl (who is in California) through e-mail Skype or text, for the organizing.

Please contact Ingrid at Ingrid@msakl.org.nz if you would like more information or if you would like to take on this project.


4. Brain Day – 21 July 2018This free, fun annual event will take place at the University of Auckland Business School, Owen G Glenn Building, 12 Grafton Road, from 9am to 3:30pm.

Click here for more information


5. July Mid-Winter lunch social event – 28 July 2018Our President, Neil and the Committee of MS Auckland invite you to a special Mid-Winter lunch on Saturday the 28th of July from noon to 3pm. The cost is just $25 per person and there will also be a cash bar.

This fun, social event will take place at the RSA in Swanson but we hope that people from every part of Auckland attend. Book early to avoid disappointment!

More information on the flyer below, or you may contact Neil at nbw@xtra.co.nz or 021 531 654.

6. Life Buoy for MS 2018 – an overwhelming success! 

Wow! Thank you so much to our wonderful community! Together we raised a net amount of just over $71,000 for people affected by MS.

This is an amazing result thanks to the generosity of our community, our hard-working volunteers and our kind sponsors - Harcourts Cooper & Co, JUCY and Care on Call.

Big hugs to you all x


7. Street Appeal - September 7th and 8th 

Hundreds of volunteers will be taking to the streets of Auckland on Friday the 7th and Saturday the 8th of September to raise money and awareness of Multiple Sclerosis. We need you! Are you able to give a couple of hours of your time? If so, Charlotte would love to hear from you. She is organising our sites and rosters this year and can be contacted at streetappealv1@gmail.com or by phone on 09 845 5921.

If you are unable to help during the weekend, but can perhaps do something through your work or local groups or networks, please let Charlotte know. We have a target of $55,000 to reach. As the quote from Helen Keller states ‘Alone we can do so little, together we can do so much’.


8. Payroll Giving and Regular Giving
In our e-news last month we highlighted Rebecca who donated to MS Auckland directly through her pay. Her donation was then kindly matched by Spark. Together they are helping us make a difference to those affected by MS.

If your employer does not provide a matching amount you are still entitled to donate directly through your pay. When you sign up for payroll giving your donation to MS Auckland will be taken out of your regular pay. If your donation is more than $5 you will receive a third of the donation amount back as an immediate tax rebate. Therefore a donation of $30 each payroll will mean only a $20 reduction in your take home pay and an instant tax advantage.

More information on payroll giving can be found here

Let your employer know that you would like your donations to go to Multiple Sclerosis Society of Auckland and the North Shore Incorporated.

You may, however, choose to be a regular monthly donor through your bank account or credit card. Whichever way you choose, your regular gift is a great way to support the work of MS Auckland on a regular basis.

Many of you will choose to donate once a year, or when you are able and I also want to acknowledge this as another way of making a valuable contribution. All donations supporting people affected by MS are appreciated so very much.

If you would like more information on payroll giving, monthly donations, or annual donations, please contact Becky in the office: becky@msakl.org.nz or phone 09 845 5921.


9. Ways of connecting with your MS Field WorkerOur MS Field Workers love to hear from you and visit with you. With rising fuel costs and Auckland traffic problems, it is getting harder and more costly to get around. But we have technology and can connect via Skype, FaceTime, What’s App, Google hangouts and probably more! To arrange a ‘virtual’ visit with your Field Worker just give them a call or a text. They can be contacted through the office on 09 845 5921.


For regular news and updates please join us on Facebook and check out our website.

Enjoy each day good people!

Until next month,

Best wishes,

Ingrid Minett
General Manager