Fear can be paralysing. Fear of what we do not know or cannot see is something we are all a little more familiar with these days but imagine if this was your normal. Imagine if you lived in this heightened state of anxiety all the time, without reprieve, because you or your child have a genetic condition that causes tumours to form on nerves anywhere in the body, including the brain and spine.
An unpredictable, painful and progressive condition that gives no clue as to when, where or how severely it will impact function.
There is no doubt that life in 2020 has changed the world and us along with it, so this will be one of the most important letters we will ever write to you.
We take our responsibility to those living with Neurofibromatosis (NF) in Australia very seriously. We are acutely aware that awareness of this devastating condition is far too low and that many struggle to receive the information and care they need at critical moments in their journey.
The impact of donor fatigue in the wake of recent bushfires, the cancellation of our biggest fundraising event in March (Cupid’s Undie Run) due to COVID-19 and now the economic after-effects we are currently experiencing, means we are struggling to meet the financial demands for our critical support services to members of our community.
Will you help us to raise $100,000 before the end of June to ensure there is always someone to advocate for, and support those living with Neurofibromatosis?
The Children’s Tumour Foundation is the link that connects people impacted by NF with critical support services and to each other. We are dedicated to raising money to fund vital research, create awareness and provide practical support for people with all types of NF. However, our efforts are currently being compromised by external events that are having a direct impact on people’s capacity to give.
We need your help to ensure there is always someone on the other end of the phone; to ensure there is always someone advocating for better resources and treatment options, and to ensure there is always someone sharing what makes the NF community so resilient and strong. Because without that, we have no voice.
Together we are stronger.
If you are able, can we please call on you to show your support to those who so often feel invisible by giving a gift of $25, $50 or an exceptional $100 at this critical time? Help ensure 1 in 2,500 people with NF in Australia are always seen and always supported.
As a nation we have stood together by standing apart to protect the most vulnerable and we are now being rewarded with greater freedoms. But for families living with NF, the battle does not end with the opening of borders and easing of restrictions.
NF does not hibernate. NF does not discriminate. NF is for life.
The CTF is a small team with big responsibilities. By helping us to raise these funds, you are supporting us in achieving our objectives:
- Every parent of a newly diagnosed child is empowered with balanced information and their feelings of grief and heartbreak are validated;
- Every person who reaches out is able to connect with medical and allied health professionals that understand the nuances of NF;
- Our adult and child NF Clinics remain open and operational;
- Our peer leaders are trained and prepared to support other families going through similar experiences, and
- Clinical trials like the MEK Inhibitor Research Trial move forward and help give hope to Australian families now and in the future.
Can you help ensure that support services are always available when they are needed most?
A donation of just $25 moves us closer to more effective treatment options and support for families living with NF. A monthly donation of $25 will enable us to better plan those programs and grow the opportunities.
This letter comes to you as we come to the close of NF Awareness Month. A campaign that has brought us closer to the international NF community, brought you a more usable and informative website and increased awareness of the condition through the support of key media partners, our own story-telling and through your own sharing of our content.
Please head to our website today to make a tax-deductible donation. Why?
Because tumours should never be a person’s normal.
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Alternatively, you can contact us by phone on 02 9713 6111
The Children’s Tumour Foundation Team
SNAPSHOT OF OUR IMPACT IN 2020 SO FAR FIND OUT MORE ABOUT NF CONNECT