We need your help to make Trikafta available in Australia to improve the lives of thousands of Australians with Cystic Fibrosis.
Cystic fibrosis (CF) is one of the most common, autosomal recessive, life-limiting diseases affecting children and adults in Australia. It causes thick, sticky mucus which affects the lungs and digestive system. There is no cure.
You can support us in this fundraiser by:
1. Electing to donate to CF Australia (supporting research)
2. Electing to donate to our dedicated CF fundraising account (where the money raised will go to hospital medical equipment, amenities which make their stay in hospital more like home and personal CF medical equipment, such as percussion vests.)
3. Encourage your social network to do the same and support you in getting us to Boston and back to raise awareness for this worthy cause.
The Background Story:
Mia Warren was diagnosed with Cystic Fibrosis at 6 weeks old. Mia is now 13 and her condition continues to deteriorate. Mia’s condition has been worsening by the year and her “normal” lung function has dropped now to 60% - when she is sick Mia has a lung function below 40%.
There is a drug which has been produced called Trikafta. It is produced by Vertex which is based in Boston, Massachusetts. Trikafta has the ability to significantly improve the patient's lung function which is life-changing for any CF patient.
Compared to other drugs, the difference Trikafta brings to the fight against Cystic Fibrosis is its wide-ranging benefits for the majority of people suffering from the disease. Trikafta will benefit anyone with one gene mutation of deltaF508 - over 90% of people with CF have the gene mutation deltaF508.
Unfortunately, Trikafta is not on the PBS (Pharmaceutical benefits scheme) in Australia and therefore costs circa $300,000 per year to be on the drug.
We need more pressure on the government to make this available and you can help by raising money and awareness.
Our fundraiser - Sweat 4 CF
- If the government won't fund Trikafta, we just need to go and get it ourselves.....well at least raise more awareness so the government will approve Trikafta on the PBS.
- As part of this fundraiser, we also want to raise much-needed funds to support the children's hospitals and CF families across Australia. This includes hospital medical equipment, amenities which make their stay in hospital more like home and personal CF medical equipment, such as percussion vests.
- Join us on the journey through the rest of May (Cystic Fibrosis Month) and Sweat 4 CF by riding, running, walking, paddling…..even crawling if need be, and track your KMs. We are going to Boston to bring Trikafta to Australia.
- Travel (theoretically) from Newcastle (John Hunter Hospital) to the Vertex headquarters in Boston, Massachusetts. Approximately 32,000km roundtrip.
- Spread the word about the Sweat 4 CF fundraiser on all of your social media accounts by sharing this campaign
- Exercise as often as possible and have your social network support you by donating to the Sweat 4 CF fundraiser page
- Always include the link to the fundraiser page on each of your posts
- Take as many pictures as possible of your progress – include the #SWEAT4CF and also send through your photos to email@example.com so we can put your pictures on Mia’s wall in her hospital room (gives Mia heaps of inspiration to keep moving)
- Also, include the KMs you have travelled and we will add them to the distance travelled – every inch counts