TAN Newsletter

Issue 14, June 2023 

www.angelman.org.nz

CONTENTS:

  • Greetings and Check in

  • Rare Disorders awareness month (March)

  • TEN 4 TEN 4 TEN - the year long IAD fundraiser

  • Update on AS Registry and Clinic in NZ

  • Carers NZ Petition

  • Being a TAN Trustee - Tareen Ellis

Greetings and Check in

Kia ora Angelman whanau and friends,

 

Its winter, its cold and its wet outside. Its also the perfect time to cuddle up with a warm drink and take a few minutes to do an annual WOF on your own Self-care Plan. Self-care is the regular, practice of improving your own physical and mental health, and should become part of your everyday routine. Being healthy in body and mind is vital for everyone, but especially for family-caregivers. You can't keep pouring from an empty cup - so do it for your loved-ones! Get moving, eat healthy, hydrate, rest when you can, and check in on relationships. See "Make a Self-care Plan", from Carers NZ.

 

Enjoy reading the updates about all the important activities happening in the background by our Board of Trustees, as we wrap up this term of service and prepare for our AGM in August.  

 

Aroha nui, stay well and take care.

 

Ursula Christel

Chairperson, TAN Board

angelmannetwork@gmail.com

021-1382878

Rare Disorder Awareness Month (March) 

During Rare disorders Month, The Angelman Network coordinated an awareness event at the Warkworth Library on Sat 25th March. The rare disorders represented, included Angelman syndrome, Prader-Willi, Duchenne Muscular Dystrophy, Fabry disease, Dystonia, Lennox-Gastaut Syndrome and L1 syndrome. The intention of the awareness campaign was to lobby for the implementation of the proposed National Strategy for Rare Disorders in NZ (visual above). 

 
Read more...

TEN 4 TEN 4 TEN Fundraiser!

 

Do you have a Birthday or a special anniversary coming up in June, July, August?

 

Our YEAR-LONG IAD fundraiser has been sitting at the $1,611 mark since March and there are now only 9 MONTHS left for us to get to the $10,000 goal. Can you help us get to $3000 by August? We really, really need everyone's support to achieve this target.

NB: Funds raised will be going towards establishing an Angelman syndrome registry in NZ and an AS clinic in Auckland, and to support families to access the clinics.

 

Please share this link on all your social media platforms asking for a $10 donation in lieu of a gift or simply a donation to support this great cause; and please ask family, friends and colleagues to share this link, too. We can only achieve our goal for this important project, if we do it together.

 

Givealittle Page

Update on AS Registry and Clinic in NZ 

We have been talking to fellow leaders at ASF (USA), FAST Australia, Australia Angelman Syndrome Association, Rare Disorders NZ, Cystic Fibrosis NZ and the ADHB - to gather information on how to best set up a NZ Angelman registry and clinic. It is important to have this all in place in NZ, should any therapeutics become available in the near future.

 

These meetings have helped to identify the most efficient way forwards based on what already is in place. We know it will take time, but the best time to start is now! We will share this plan with you soon.

 

As this project progresses, it will require ongoing financial input. But there are so many positive reasons why a NZ database and clinic will be beneficial to families that we are hopeful all our NZ families and whanau will get behind this initiative.

 

PLEASE support our IAD Givealittle campaign.

 

If anyone is in a position to help us fundraise in other ways for this important project, please contact us asap: angelmannetwork@gmail.com

 

Carers NZ Petition

 

The Angelman Network is one of 56 national not for profits that make up the NZ Carers Alliance. Together, we are petitioning that the House of Representatives establish a Minister or Commissioner for family carers, and develop protective legislation, programmes, and services to sustain carers physically, mentally, and financially. This will greatly benefit all our Angelman families!

 

PLEASE sign the petition now and help carers get the recognition and support they deserve. Let's make sure that choosing to care for our loved ones is not a path to poverty and burnout. Together, we can make a difference for all NZ carers and their families. See link below.

Closing date: 18 Jul 2023

Petition

Ursula recently attended a Kōrero and coffee event with Paula Tesoriero - chief executive of the new Whaikaha / Ministry of Disabled People. She took the opportunity to give Paula a TAN Info pack, and pointed out that our non-verbal family members also need a voice at Whaikaha, as do the primary family caregivers who speak on their behalf.

Being a TAN Trustee - by Tareen Ellis

 

Being a trustee for The Angelman Network is an incredible opportunity filled with numerous rewards. I have gained valuable insights into the challenges faced by individuals with Angelman Syndrome and their families, and the challenges to navigate the New Zealand healthcare system. I have had the chance to expand my knowledge in healthcare, research advancements, fundraising, and community outreach. I have enjoyed being exposed to an array of groups in New Zealand, such as the Rare Disorders NZ, that are working together for the betterment of those with rare disorders and their families.
 

Serving as a trustee I have been given the opportunity to help raise awareness, support research, and advocate for improved treatments and therapies for our beautiful children. I have had the privilege of collaborating with a passionate and dedicated team of fellow trustees and community members. As a parent with a child with special needs you can feel isolated. It is great to create a supportive network that offers guidance, comfort, and encouragement to individuals with Angelman Syndrome and their loved ones.

 

Additionally, being a trustee has provided an opportunity for personal growth and learning. It has allowed me to be part of a larger movement that strives for inclusivity, equality, and a better future for those affected by the disorder. Being a trustee has been an immensely gratifying experience that has made me feel empowered to make a positive impact, create lasting connections, and be an advocate for change.

- Tareen Ellis, 2023 Secretary, The Angelman Network

 

The Angelman Network AGM is coming up in August. If you or a family member, relative, or friend might be interested in joining our Board of Trustees and become part of our passionate team, please contact us at angelmannetwork@gmail.com. We will send a nomination form with more information on this enriching role.

Keep in Touch

Join us on social media

 

Join us on social media to follow our news on important national and international developments and events.

 

You can also help us spread more awareness about Angelman syndrome by sharing our posts and our Givealittle fundraiser.

 

We welcome any feedback, questions or support requests, so do get in touch.

 
Social media

Did you know that The Angelman Network (CC46746) is a registered Charity in NZ?

You can help to support the work that we do, by contributing a donation to our Givealittle Page here.

Or make a direct bank transfer to:

The Angelman Network Trust - ANZ Bank  06-0817-0352270-00

All donations are gratefully received.

 

angelmannetwork@gmail.com

021-1382878

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