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 Community Sector e-Newsletter Edition  8 - 2019

Welcome and First Words
Hello PHamily, welcome to another edition of our bi-monthly community e-newsletter, "The Hype", for our Australian pulmonary hypertension community and beyond. 

It's actually been very quiet the last few months here at the Network. We have all had our heads down finalising the incorporation and charity paperwork, not to mention the new policies and procedures!  The events I did attend I forgot to take photographs to show you, sorry about that. 

I did attend the monthly enewsletter club hosted by #ConnectGroupsAssociation where Amanda and I spent time learning new things about Mailchimp. It's so nice to learn with other people who get as excited as we do about the work they do.  We have been working closely with #SpotOnPrinting and their designer Beth on our new branding for PHNA, which was proudly funded by ConnectGroups and Lotteries West. I look forward to the launch of that in the near future. We have another meeting with the Lung Foundation Australia to chat about what they have been up to in the PAH space, so I am looking forward to chatting to them about that and letting you know what's ahead. We have included their latest resource a PAH book in pdf and Ebook format for your convenience. 

We hope you enjoy our newsletter this time around, and wish you all peace and happiness in your everyday lives.  Melissa Dumitru and Team PHabulous at #PHNA
It's been a sad time at our Network this month. We lost another one of our beautiful members. Her poor body just gave up after years of fighting multiple chronic diseases.  It was quite a shock when her lovely husband contacted me and took me through all the events that led to her death.

Everytime one of our members dies I go through this process. It takes a little piece of me and replaces it with great sadness. We not only lose the person living with the disease, but we lose their carers and families from our Network, and that hurts too. The sense of loss that is felt by so many of us as we see the flame of the candle posted on facebook pages telling us about the passing of another PH Angel is quite devastating. We would like to take a moment to honour all our PH Angels. 

The PHNA team extend their deepest condolences to the Wood family in this incredibly difficult and sad time. CEO Melissa Dumitru 
Network Nibbles 
 
 
It's time to share with you some of the Network news from our website and I thought I would start with our Mission statement. Since we began as a support group in 2010 we have worked very hard for our members and we have taken the words in our statements quite literally. The small team we have assembled works very hard on behalf of the pulmonary hypertension community, and trying to advance it to benefit the people living with this disease. We work openly with others who are willing and have the same vision we do for our community. Please click HERE to read more. 
PHNA are in the process of rebranding and changing things up. Thanks to a restricted education grant through the #ConnectGroupsAssociation "Give it Forward" initiative, proudly sponsored by Lotterywest, we have been given the funds to update some of our valuable resources now that we are an incorporated association and national charity with tax deductible status.  Over the coming months the first thing you will see is our new logo which is at the top of this enewsletter. We are pleased to be working with a wonderful graphic designer  Beth Richards from #SpotOnPrinting who is helping us refresh everything ready to share with you. Keep your eye out for our new graphics and other resources in the future. 

Community Spotlight 

ConnectGroups is excited to announce the launch of its Podcast Series!
The Podcast platform will enable the organisation to reach out to a larger audience to promote the work of local Support Groups, communicate the benefits of peer support, and further validate the Support Group sector. It will also allow ConnectGroups to better engage and support its regional and rural Support Groups, as well as members who are unable to attend ConnectGroups' face-to-face sector development sessions.


Click HERE  to listen to ConnectGroups’ Podcasts. If you’d like to be featured in a Podcast, please email info@connectgroups.org.au
PHNA have been running our "Support Registry" for the last year or so in order to better equip you with the tools you need. Our registry was borne from necessity as we ascertained that our members and the wider PH community needed certain things in order to live their best lives with PH. It enables us to highlight certain areas that need more attention, resources, education or support. You are not required to become a member to participate in our registry. To date our registry has only been used to benefit you with the resources and support you need. In the future we were hoping to utilise the statistics that you provide for more intense discussion and/or research purposes. All information would be de-identified and subject to strict policy and procedures. We will let you know how that goes, but in the meantime check it out for yourselves. All information is confidential. 
PHNA has always worked very hard to raise the funds necessary to produce work for the PH Community in Australia. Everyone who works for our organisation does so on a voluntary basis. All our administration team is qualified in the Community  Services Sector and have received the appropriate nationally accredited training needed to participate and run an organisation like ours.  We have valuable sponsors who continue to help us host events, and sponsor our "Outreach Programs", resources and administration. We have also been lucky enough to receive several restricted grants through #ActelionPharmaceuticals,  #ConnectGroupsAssociation, &  #Lotterieswest. There have been some amazing donations from #TheLionsClubofWhitford and members who have sponsored events. Without these valuable contributions we could not continue. Now that #PHNA are a registered Association & Charity for Australia with tax deductible status, your donations are a tax deduction. Click HERE to donate today.

Sense N' Style

Good to Know

Lung Foundation Australia 

Lung Foundation Australia are excited to launch the new Living with Pulmonary Arterial Hypertension (PAH) resource. The resource is the ultimate guide to understanding more about PAH, symptoms, treatment options and practical steps to live well. Download your free copy today: https://bit.ly/2Z5IBgF 

The link is included above but can be accessed here:https://lungfoundation.com.au/wp-content/uploads/2018/09/Book-Better-living-with-PAH.pdf
Mental Health Moment 
Survivors guilt is inevitable with PH

Looking Back at My PH Journey and Finding Hope in the Hard Places

To read this article in full please click here. Brought to you by www.pulmonaryhypertensionnews.com 

Get Social with Us 

For our latest edition download or go to our website to subscribe and read other issues.
ACKNOWLEDGEMENT: "The Network" would like to acknowledge Aboriginal and Torres Strait Islander peoples as Australia's First People and Traditional Custodians. We value their culture, identities, and continuing connection to country, waters, kin and community. We pay our respects to Elders, past and present, and are committed to making a positive contribution to the well-being of Aboriginal and Torres Strait Islander young people, by working on providing services that are welcoming, safe, culturally appropriate and inclusive.  PHNA is committed to embracing diversity and eliminating all forms of discrimination in the provision of health services. PHNA welcomes all people irrespective of ethnicity, lifestyle choice, faith, sexual orientation and gender identity. 
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Chronically Inspired - Life.Beyond.Disability
73 Southern Cross Circle
Ocean Reef, WA 6027
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Chronically Inspired - Life.Beyond.Disability · 73 Southern Cross Circle · Ocean Reef, WA 6027 · Australia

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