Support Jo’s Fight against Central Nervous System Vasculitis

Name: Support Jo’s Fight against Central Nervous System Vasculitis
Start: 2026-06-02T12:00:00+10:00
End: 2026-06-02T12:00:00+10:00

About

Hi everyone! We’re currently selling tickets for Jo’s fundraiser as she bravely fights Central Nervous System Vasculitis. Every ticket sold helps support her journey toward vital treatment overseas.
All prizes will be listed on the facebook page https://www.facebook.com/share/1DK8bawjJX/?mibextid=wwXIfr
Thank you so much for your kindness and support—it truly means the world 💛

On the 18th of June 2024 the French Family's world was turned upside down when Jo was rushed to hospital not even knowing her own name. A Carotid Artery Tear/Dissection in her neck was discovered. Jo had been to her local GP numerous times the week leading up to this with severe headaches and ringing in her ears that was that was brushed off as a possible sinus infection.

After being transferred to a larger hospital by ambulance and weeks of testing the French family received devastating news that Jo had experienced multiple strokes and suffered brain damage and she was diagnosed with a extremely rare Disease that less then 2 in a Million people get called Central Nervous System Vasculitis.
CNSV is and autoimmune Disease that attacks and inflames the blood vessels of the brain and spine, causing strokes and aneurisms. There is no cure but with the right treatment it can be put into remission.

In the past 22mths Jo has gone through 6mths of Chemo, Monthly IVIG infusions and 4 Monthly Rituxamb Infusions just to stay alive, along with too Many specialist appts and MRI’s, Ct Scans, Brain angiograms as well as taking numerous daily medications including steriods. some of these are covered by Medicare in the public system and some are costing upwards of $4000 per infusion in the Private System as Jo has no health insurance. She is going through all of this whilst trying to recover and survive and had to learn how to talk and walk properly again.

It has been a really stressful and scary time for Jo, her husband and children but Jo has been extremely tough and brave trying to show up for her Kids Soccer games and Dance Comps and continuing to enjoy her love of music and concerts and not lay around feeling sorry for herself when her brain and body allow it even if that means the use of aids like being in a wheelchair, mobility scooter or the use of a walking stick depending what the activity called for.

Jo and her family are the first to help others but will not ask for help for themselves, and thats why the Go fund Me, raffles and fundraisers have been organised.

Just some on the daily issues Jo faces are Crippling Headaches, tingling and numbness in her arms and legs l, face and head, left side weakness, Vision problems, hand-eye coordination problems, Fine motor difficulties, balance issues, severe memory issues, comprehension difficulties, speech difficulties, panic attacks and Anxiety and depression, She has made massive improvements with movement and speech since the artery/dissection, strokes and diagnosed through her strength, stubbornness and determination.

Because CNSV is so rare most Doctors have never seen, nor will see a case like Jo’s local treating Gp.
Friends tried to do a Go Fund Me roughly a Year a go to get Jo to the Mayo Clinic in the USA which was costing upwards of $300,000 but it was quickly realised that, that amount was not going to be achievable and Jo shut it down and put up a post offering everyone their money back.

Jo’s Local soccer club have helped raise some funds as well and Jo and her family have sold one of their Cars and brought a much cheaper and older one to add to the funds but are still $20,000 short purely for the medical side of things everything else they have covered themselves.

They were going to continue selling their belongings and give up their secure place to live to try and fund the rest themselves until I put a stop to it. NO PERSON OR FAMILY not just Jo should have to sell their belongings to access medical treatment to stay alive or travel to another country for life changing treatment not covered by medicare in Australia.

Jo has been given the opportunity to access world class diagnostic treatments at UCLA , Southern California .
This is the 1st comprehensive multi specialty program dedicated to CNS Vasculitis and has had extremely promising results.
To access this Program, she will need to travel to America with support, pay for the assessments and diagnostic treatment, significant costs for travel insurance ,transport to and from the facility ,accommodation and daily living costs. With the support of the public, community and friends ,
I am hoping to be able to raise $20k to enable her to access potentially life changing treatment options that are unavailable online or through video or Telehealth.

We understand that times are tough for everyone right now but if you can help in any way whether that be donating just $5 or $10 or helping us by sharing this post and getting it out to as many people as possible it would be so truely appreciated and will help ensure that Jo’s Kids continue to have their Mum around for as long as possible and hopefully many years to come and also raise awareness of CNSV as its so extremely rare and may help others.

Jo was a loving and caring Daycare and Primary school teacher for over 20years.
Jo truely has a heart of gold and would help
Anyone.
It’s very highly likely Jo can never work again in any capcity.

Any money raised above the $20,000 needed will go to the ongoing care Jo will require with the infusions, scans, medication for the rest of her life, help her family with the loss of a household income and the struggle of the cost of living that everyone faces and help create a safety net for Adam if he needs considerable time off work as the only source of income if Jo has more strokes or is hospitalised and requires his care and I am hoping enough will be raised for a well deserved rest/surprise amongst the Chaos of travelling half way across the world just to get advice on treatment, new medication and medical diagnostics from specialist that know and understand and have treated Jo’s Disease
✨ Here’s what YOU could win:

💰 $500 CASH prize — donated by Brenno’s Plumbing
🍽️ $200 voucher to Hotel Bargo (x2!)
🎤 3x seated tickets to Harry Styles Together Together Concert (Sunday 13th December)
🎶 Taylor Swift Bundle including:
• Limited edition TLOASG vinyl album
• Limited edition CD album
• 7-inch vinyl single
• Hand-autographed CD/CD insert with display case

💆‍♀️ 3 x 30-minute massages from BKK Remedial Massage Mittagong
🚗 $150 voucher – Tyre Power Tahmoor
💄 $150 voucher – Studio Groomed
☕ $20 voucher – Coffee & Crumb Co
🕯️ Wax melt kit, car diffuser & diffuser – Sensational Scents
🏡 Full domestic deep clean (2 cleaners!) – Homes Refreshed by Ally & Valentine Home Cleaning Services
🏃 $50 Rebel Sport voucher – donated by Leonie Ryan
✨ Nutrient ice pack + facial voucher – Heidi’s Beauty Workshop
🕯️ Candle pack – Sound of Mind
🧶 2 handmade crocheted bags – Diane Jackson
🔧 $300 voucher – Scott’s Performance Tuning
🏪 $100 voucher – Hill Top Village Store
📚 Limited edition signed series – donated by local author Tanya Nellestein