NFAWA Newsletters

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🌼 Welcome to Our First NFAWA Community Newsletter! 🌼 

Hello everyone, 

As we hop into the Easter season, we’re excited to bring you the very first edition of our community newsletter! This is a new space for us to share updates, celebrate what’s happening in our community, and highlight the wonderful people who make it all possible. 

With the holidays just around the corner, we hope this newsletter brings a little extra warmth, connection, and joy to your week. Whether you’re taking time to relax, spending the break with loved ones, or joining community events, we’re glad you’re here and part of this journey with us. 

Thank you for being a valued part of our community — we look forward to growing, sharing, and celebrating together. 

Wishing you a safe, happy, and restful Easter break! 

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🐣 What’s Happening This Easter? 

We’ve got some lovely opportunities this season for families, friends, and community members to come together. Here’s what’s coming up: 

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🤝 NF Social – The Niche, Nedlands 

Come along for a friendly and welcoming NF social catch‑up at The Niche. 
It’s a great opportunity to connect, enjoy conversation, and spend time with others in our community. 

📅 Date: Tuesday, 14 April 
📍 Location: The Niche, 11B Aberdare Road, Nedlands  
⏰ Time: 6pm start 

PROUDLY SUPPORTED BY NFAWA 

Wheelchair accessible, public toilets onsite, free parking, everyone is welcome! 

RSVP on our website: Social @ the Niche | Neurofibromatosis Association WA 

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🧸 Teddy Bears’ Picnic – Cannington 

Pack your favourite teddy and a picnic blanket to join us for a fun, family‑friendly picnic in the heart of Cannington! 
There’ll be games, activities, storytelling, and plenty of space to relax and enjoy the autumn sunshine, plus the Canning River Cafe will be open for tasty treats ☕ 

Everyone is welcome! 

📅 Date: Friday, 17 April 
📍 Location: Kent Street Weir – Cnr of Kent St & Queen’s Park Rd, Wilson 
⏰ Time: 10:30am to 12pm 

PROUDLY SUPPORTED BY NFAWA and THE CITY OF CANNING 

A perfect outing for young children and families — the more teddies, the better! 

Wheelchair accessible, public toilets onsite and free parking. 

RSVP on our website: Catch Up and Chat Teddy Bears Picnic | Neurofibromatosis Association WA 

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⚓ Navy Club, Fremantle – Monthly Social Gathering 

Join us at the historic Navy Club in Fremantle for our regular community catch‑up! 
Held on the first Sunday of every month, it’s a relaxed and welcoming chance to connect with others and enjoy the vibrant surroundings. 

📅 Next Meet-Up: First Sunday of the month 
📍 Location: Navy Club, 3rd floor, 64 High Street, Fremantle 
⏰ Time: 5 - 7pm 

Everyone’s welcome, whether you’re a familiar face or visiting for the first time. 

RSVP on our website: Navy Club Social | Neurofibromatosis Association WA 

 

 Looking Ahead:  

💙💚 May is Neurofibromatosis Awareness Month 💚💙 

May is a special month for our community as we come together to raise awareness, show support, and shine a light on Neurofibromatosis. Throughout the month, we’ll be hosting a series of events designed to connect our community, spark conversations, and celebrate the strength and resilience of individuals and families living with NF. 

Here’s what’s coming up: 

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⚓ Sunday 3 May – Navy Club, Fremantle 

Our regular monthly gathering at the Navy Club is a great way to kick off NF Awareness Month. 
Come along for conversation, connection, and a relaxed start to the month. 

📍 Location: Navy Club, 3rd Floor, 64 High Street, Fremantle 
⏰ Time: 5 – 7pm 

RSVP on our website: Navy Club Social | Neurofibromatosis Association WA 

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🤝 Tuesday 12 May – NF Social at The Niche, Nedlands 

Join us for a mid‑month social catch‑up at The Niche. 
It’s the perfect opportunity to meet others, share experiences, and feel part of the NF community. 

📍 Location: The Niche, 11 Aberdare Road, Nedlands 
⏰ Time: 6pm start 

RSVP on our website: Social @ the Niche | Neurofibromatosis Association WA 

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🌳 Sunday 17 May – Shine A Light on NF Picnic, Kings Park 

A highlight of NF Awareness Month! 
Bring your family, friends, and a picnic blanket as we gather in the beautiful surroundings of Kings Park to celebrate our community and raise awareness together. 

📍 Location: Old Tea Pavilion, Fraser Avenue, Kings Park 
⏰ Time: 4:30pm onwards 
💙💚 Theme: Wear blue and/or green to show your support 

RSVP on our website: 🌟 Shine A Light on NF Picnic – Western Australia 🌟 | Neurofibromatosis Association WA 

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☕ Catch up & Chat – Dates to Be Confirmed 

We will also be hosting a series of relaxed beverage catch‑ups at selected cafés throughout May. 
Stay tuned for dates and locations — these are wonderful informal opportunities to connect, chat, and meet new faces. 

 

💙 About Neurofibromatosis (NF) 💚 

Neurofibromatosis, often shortened to NF, is a group of genetic conditions that cause tumours to grow on nerves anywhere in the body. These tumours are usually non‑cancerous, but they can sometimes cause health challenges depending on where they develop. There are three types of NF — NF1, NF2‑related schwannomatosis, and schwannomatosis — and they affect everyone differently. Some people experience very mild symptoms, while others may face more complex medical needs. No two individuals with NF are the same. NF can be diagnosed in childhood or adulthood, and it affects people of all backgrounds. It is more common than many people realise. With the right medical care, community support, and awareness, individuals with NF can lead full, meaningful lives.  As a community, we come together to raise awareness, share knowledge, and support those living with NF. That’s why the month of May is very special for us all. 

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💚 Support and Services 

We are here to support individuals and families living with Neurofibromatosis through connection, information, and community. Whether you’re newly diagnosed, seeking guidance, or looking to connect with others who understand NF, our services are here to help. 

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🤝 Community Support & Social Gatherings 

Regular social events — including monthly catch‑ups, picnics, and family activities — provide a relaxed space to meet others, share experiences, and build meaningful connections within the NF community. 

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📘 Information & Resources 

We provide easy‑to‑understand information about Neurofibromatosis, treatment options, and where to find specialised care. Our goal is to ensure families feel informed and supported at every stage of their NF journey. 

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📞 Individual Support 

If you or someone you care for is impacted by NF, we can help connect you with services, guide you toward medical or social support, or simply listen. No question is too small — we’re here when you need us. 

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🧒 Support for Children, Teens & Families 

We understand that living with NF can bring unique challenges. Our family‑focused approach includes child‑friendly activities, youth opportunities, and supportive spaces for parents and caregivers. 

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🌐 Awareness & Advocacy 

We work to increase community understanding of NF, promote early diagnosis, and support initiatives that improve access to specialised care. By raising awareness, we help build a stronger, more informed community for everyone affected. 

 

✨ Community Spotlight 💖 

Each edition of our newsletter will shine a light on the wonderful people who make our NF community stronger, kinder, and more connected. This month, we’re proud to highlight some people whose positivity and involvement truly are making a difference. The Neurofibromatosis Association of Western Australia Committee! 

  (Pictures unavailable at this time)

We look forward to sharing more community stories in each newsletter. 

 

📣 Updates and Announcements 

Here are some important updates from our community and organisation as we head into the Easter season and look ahead to NF Awareness Month: 

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🆕 New Events and Programs Coming Soon 

We’re currently planning several new activities for later in the year, including family meet‑ups, information sessions, and more opportunities to connect. Keep an eye on our upcoming newsletters and social media for announcements. Are you following us to get updates? 

Website - Neurofibromatosis Association WA | INFORMATION & SUPPORT | Perth WA, Australia 

Instagram - nf_connect 

Facebook - Neurofibromatosis Perth Western Australia 

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💙 NF Awareness Month Preparations 

With May just around the corner, we’re getting ready for a big month of awareness, advocacy, and community connection. You’ll soon see more details about: 

• Shine A Light on NF activities 

• How to get involved 

• Easy ways to help raise awareness 

• Opportunities to share your story 

• Fundraising – Collaboration with Enchanted Crafts, WA! ​

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🏛️ Community Partnerships 

We’re continuing to strengthen our partnerships with local organisations, clinicians, and community groups to improve support for individuals and families living with NF. Exciting collaborations are in development — stay tuned! 

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🌐 Website and Resource Updates 

Our online resources are being refreshed to make it easier to find information about NF, services, events, and support options. Updated guides and fact sheets will be available soon. 

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📬 Share Your News 

Do you have something you’d like included in a future newsletter or website? It could be a story, photo, event, or message? We’d love to feature contributions from our community. Simply reach out and we’ll take care of the rest. Contact Us | Neurofibromatosis Association WA 

 

🧡 Resources for Families 

Here are some helpful organisations, community groups, and online resources that support individuals and families living with Neurofibromatosis and related needs. These groups offer information, connection, education, and care across a range of areas. 

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🧬 NF‑Specific Support & Awareness 

⭐ Children’s Tumour Foundation (CTF) - A national organisation supporting individuals and families affected by NF through information, advocacy, awareness campaigns, and community events. 

⭐ NF Little Warriors Perth – Facebook Page - A supportive Perth‑based online community for families with children living with NF. 

⭐ Neurofibromatosis Perth, Western Australia – Facebook Page - A local community group where individuals and families can connect, share experiences, and stay informed about local events. 

⭐ nf_connect – Instagram Page - A positive, awareness‑focused social media space sharing stories, updates, and NF‑related community information. 

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🧠 Health, Neurological & Genetic Support 

⭐ Neurological Council of Western Australia - Provides support, advocacy, and resources for people living with neurological conditions, including NF, as well as information for families and carers. 

⭐ Genetic and Rare Diseases Education Centre (GaRDEC) - Offers education, support, and clear information for individuals and families living with rare genetic conditions, including NF. A great resource for learning, understanding care pathways, and accessing support. 

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👶 Family & Community Support Organisations 

⭐ Kiind - A Western Australian organisation supporting families of children with disabilities or complex needs. They offer community, information, and programs designed to empower and connect families. 

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❤️ Community Health & Wellbeing 

⭐ Sexual Health Quarters (SHQ) - Provides safe, inclusive sexual and reproductive health services, education, and resources for people of all ages. A helpful resource for young people and adults within the NF community seeking confidential support. 

⭐ Stan Perron Foundation - Supports child health, family wellbeing, and medical research across WA. Their work helps improve care and outcomes for children and families affected by serious or complex health conditions. 

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💬 We’re Here to Help 

If you need help finding the right resources or support, please reach out. We are always happy to guide you to the services that best meet your needs. Neurofibromatosis Association WA | INFORMATION & SUPPORT | Perth WA, Australia 

 

💙💚 Ways to Get Involved 💚💙 

There are so many meaningful ways to support our community and help raise awareness for Neurofibromatosis — whether you have time to join an event, offer a helping hand, or simply spread the word. Every action, big or small, makes a difference. 

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🤝 Join Our Events 

Our social gatherings, picnics, and awareness activities are a wonderful way to connect with others, meet new friends, and feel part of a supportive community. Everyone is welcome — bring your family, friends, and enthusiasm! 

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🗣️ Help Raise Awareness 

May is NF Awareness Month, and you can help shine a light on NF by: 

• Wearing blue and/or green 

• Sharing posts from our social media pages 

• Starting conversations in your community 

• Inviting others to our events 

Your voice helps build understanding and support. 

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💛 Volunteer Your Time 

We are always grateful for extra hands at events, meet‑ups, and awareness activities. Whether it’s helping set up a picnic, welcoming new families, or supporting fundraising efforts — your time makes a real impact. 

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📢 Share Your Story 

Personal stories help others feel seen, understood, and connected. If you’d like to share your NF journey, we’d love to include it in future newsletters or on our social media channels. 

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🤗 Support Each Other 

Sometimes the most powerful thing you can do is simply show up — attend an event, reach out to another family, or offer a friendly word. Community is built through kindness and connection. 

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💙 Support Our Fundraising Efforts 

Fundraising plays an important role in helping us continue our work, support families, and raise awareness for Neurofibromatosis. If you’d like to help, you can: 

• Host your own small fundraising activity 

• Support our upcoming events 

• Share fundraising links with family and friends 

• Encourage workplaces or schools to get involved 

Every contribution — big or small — helps us make a meaningful difference in the lives of individuals and families living with NF. Check out what we are working on here: Fundraising | Neurofibromatosis Association WA 

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📬 Contact Us & Stay Connected 

We’re here to support you, answer questions, and help you stay connected with the Neurofibromatosis community. 

📧 Email 

Info@nfawa.org 

🌐 Website 

Neurofibromatosis Association WA | INFORMATION & SUPPORT | Perth WA, Australia 

📱 Social Media 

Stay updated with events, stories, and awareness campaigns: 

• NF Little Warriors Perth – Facebook 

• Neurofibromatosis Perth, Western Australia – Facebook 

• nf_connect – Instagram 

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🧡 Community Connections 

If you’d like to join our events, share your story, or get involved in future newsletters, we’d love to hear from you. 

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💞 Closing Message 💞 

Thank you for reading our very first community newsletter! We’re so grateful to have you with us as we head into Easter, celebrate our strong NF community, and prepare for a meaningful NF Awareness Month in May. 

Whether you join us at an event, sharing your story, supporting fundraising efforts, or simply staying connected through our pages — you are an important part of this community. Together, we can continue to support one another, raise awareness, and make a positive difference for individuals and families living with Neurofibromatosis.  

Wishing you a happy, safe, and relaxing Easter break. 🐰🍫 
We look forward to seeing you soon! 💙💚