TAN Newsletter Issue 18, June 2024 |
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CONTENTS: Greetings & update IAD 2024 & Rare Disorders Month (March) What's happened since 18th March? - Carers NZ, Carers Alliance & Complex Care group Dystonia Seminar, Auckland Updating Contacts & Family Webinar Online Support Groups and Social media
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Kia ora Angelman whanau and friends, It's been a while since our Summer newsletter. The next one was due in April, filled with exciting plans for a proactive campaign to update our database, promote the NZ Angelman register, and invite discussions around our proposed Angelman clinic. But sadly things came crashing down on March 18th, and those plans were temporarily paused. And here we are, nearly halfway through 2024!
The unexpected restrictions Whaikaha suddenly imposed on flexible respite options in March, caught everyone in the disability sector off-guard. We are still scrambling to make sense of this appalling decision, and unfortunately, it has taken up a lot of extra time and energy. Hence this belated update. Rest assured that many meetings, protests, legal cases and advocacy campaigns, are still happening collectively in the background - and will be ongoing in the foreseeable future. So, despite the additional stress, much good is coming out of this proactive and collaborative mahi. Enjoy the read! Aroha nui, Ursula Christel Chairperson, TAN Board angelmannetwork@gmail.com 021-1382878 |
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| | 15th February - IAD 2024 Thank you to ALL our amazing FAMILIES / WHANAU / ALLIES, who made such a great effort for IAD 2024 - to 'shine a light' on Angelman syndrome in your own communities on the 15th Feb. It was so heartwarming to see the wonderful support right across the motu, for all our precious children and adults, who live with Angelman syndrome in Aotearoa NZ. And a very special THANK YOU!!, to all those who ran fundraisers to support our vision for an AS clinic - and to those who made private donations on our Givelittle page. We know these are difficult times, and we appreciate every penny. A very big Thank You also, to those who continued to share information about Angelman syndrome, on Rare Disease Day 29 Feb 2024. See link to our IAD 2024 Thank You video, below: | | |
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| | Rare Disorders Month (March) Rare Disorders NZ (RDNZ) is the collective voice of all people living with a rare disorder and their whānau in Aotearoa. The collective is made up of more than 140 disorder-specific support groups. We collaborate, plan and work together over the whole month of March, to support the annual ''Glow up & Show up' campaign. RDNZ provides a strong, unified voice to advocate for public health policy and a future healthcare system that works for those with rare disorders. The head office is based in Wellington. They work directly with the Government, clinicians, researchers and industry to promote diagnosis, treatment, services and research. RDNZ is advocating for a national framework for rare disorders in New Zealand and a Centre of Expertise. This will hugely benefit all our AS families. Link below for our part in the 2024 campaign. RadioNZ interview: 'Rare disorders aren't unusual enough to ignore' | | |
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| | The Carers Alliance falls under the umbrella of Carers NZ. The Alliance is a collective of organisations, based on the understanding that member organisations have common interests, and will be more effective acting cooperatively, to recognise, value and support family, whānau and aiga carers. The Alliance held a meeting in Wellington on 26 March, to discuss the Whaikaha funding situation. I attended this meeting via zoom. MP Penny Simmonds was invited to attend, to hear firsthand, the concerns of Family Carers. In summary, the message we shared was that Carers provide a large 'invisible' workforce that is vital to society and the economy. Yet we were not consulted about the funding decision, nor formally notified of the abrupt changes. Also, that the 'blitzkrieg' tactic had caused enormous unnecessary trauma to our fragile community, many of whom were already in crisis and could now no longer access their respite funds. By 24 April, Penny Simmonds had been stripped of the disability portfolio and replaced by Louise Upston MP. Some of the initial funding restrictions have been retracted, however most have remained in place. The new purchasing rules can be found on the Whaikaha website. | | |
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| | Until 2011, the Complex Care Group was a special interest group under Carers NZ. It is now its own legal entity - the Complex Care Group Trust. The Trust provides information and support for families and carers who are providing an intensive level of care for a disabled child/young adult, who also has either multiple disabilities, a serious ongoing medical condition, and/or behavior that requires a high level of support. The group aims to provide a collective voice for parent caregivers and an opportunity to network with other members - as well as to raise awareness with the Ministry of Health, funders and service providers, about specific issues that face our community. The Complex Care Group welcomed all family members to a Zoom meeting on 28th May. Any family carer from our NZ Angelman community, qualifies to join this wider group - and several of our Angelman mums attended this zoom meeting. It was a great opportunity to share our concerns around Whaikaha's Purchasing Guidelines restrictions. and to connect with other Family Carers in the same situation. To join the Complex Care Group, see link below: | | |
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Dystonia Seminar, AKL Since connecting with other Rare Disorder groups, I was invited to speak at the annual Dystonia Seminar held at the Surrey Hotel, on May 25th. We know that many of our adults with AS struggle with 'tremors', so in preparation for this event, I researched Angelman syndrome and dystonia and found numerous overlaps. A recent research paper: Dystonia in Angelman syndrome: a common, unrecognized clinical finding, found that of 30 subjects aged 15 - 51yrs, dystonia was present in 28/30 (93.3%) subjects! It appears that we have a lot to learn on this topic. I had been asked to speak about advocacy, so my talk was about Angelman syndrome and 'Being a Rare Kiwi'. I highlighted that working together collaboratively was vital in NZ - a bigger, collective voice can achieve so much more. Other speakers included Dr Jacqui Allen (Laryngologist), Mal Wordell (speech therapist), and Steven Fischer from the Essential Tremor group. I learnt a huge amount from this seminar and look forward to further collaborations in the future. | | |
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TAN CONTACT LIST UPDATE - WE NEED YOUR HELP! |
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To proceed with plans to set up an Angelman clinic in NZ, we need to find as many people with Angelman syndrome in NZ as possible! With updated numbers, we'll have a stronger case for an Angelman clinic, and with updated data, we'll have a better idea of the current locations of people with AS in NZ. This information will help us plan for optimum access to the clinic. We need to: Update our current contact list Proactively seek out people with AS who may not be on our current database.
We are also planning a Zoom meeting for AS families in NZ. This will give us the opportunity to: explain our vision for an AS Clinic and options for our own AS registry explain the Centre of Expertise for all rare disorders in NZ - proposed by RDNZ get feedback from families, and answer any questions.
MORE DETAILS ON THE ABOVE, COMING SOON!! |
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Disability Connect Zoom Parents Support Group - Every Monday 7-8pm
Open to anyone seeking advice or support for parenting, upcoming Needs Assessments, starting or leaving school and anything in-between. Robyn would love to meet and chat about anything that is important to you.
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Join us on social media Follow our news on important national and international developments and events - and join our various private FB groups to become part of our online Angelman community. You can also help us spread more awareness about Angelman syndrome by sharing our posts and our Givealittle fundraiser page. Other FB pages to follow: Talklink Trust Rare Disorders NZ Carers NZ FB groups to join: Complex Care Group We welcome any feedback, questions or support requests, so please get in touch. | | |
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