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Kristell De Castro
Kristell De Castro
Kristell De Castro
Story
My name's Kristell and my little girl Sienna has Common Variable Immunodeficiency (CVID). Sienna was diagnosed in April 2020 just before she turned six. She has weekly SCIG treatment and still struggles every week with it. It breaks my heart.
She’s my little superhero though.
In May 2022, I've decided to set myself the personal challenge of walking 2km a day to raise funds for the Immune Deficiencies Foundation Australia. Sienna is also going to try to join me.
I have chosen to raise funds for the Immune Deficiencies Foundation Australia (IDFA) as I have found them to be such a supportive network and praise the work they do. The information packs they supply are amazing and so informative.
IDFA supports Australians living with immunodeficiency through education, awareness and advocacy.
I'd appreciate your support in helping me to raise funds for IDFA - any donations, big or small will make a significant impact to the lives of Australians living with immunodeficiency.
Donations made through this platform are secure and will be remitted directly through to my charity of choice.
About Sienna
Sienna was diagnosed as the COVID-19 pandemic hit so it was a lot to get our heads around. Having to go into the hospital weekly for infusion training with COVID-19 was such a scary thing for us.
Before she was diagnosed, Sienna was sick every month without fail. She had pneumonia, scarlet fever, influenza and numerous severe throat infections. Sienna had her tonsils and adenoids out when she was two years old - we hoped that this would help but she was still constantly getting sick. Sienna missed out on so much due to being sick all the time.
As soon as Sienna started infusions, she stopped getting sick as much and when she did, the symptoms weren't as bad. We were also extremely strict in terms of the COVID-19 restrictions we had in place. I homeschooled Sienna for nine months in 2020.
Sienna ended getting COVID-19 from school at the start of April this year but surprisingly she coped very well with it. I was very anxious when I saw her positive test and was so thankful that she coped well.
She’s one amazing little girl and has dealt with so much so far. I couldn’t be more proud of how she handles it, although I wish I could take it all away from her.
Thanks for your support.
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The Immune Deficiency Foundation of Australia Limited
The Immune Deficiencies Foundation Australia (IDFA) is a not-for-profit registered charity who support and advocate for people suffering with Immune Deficiencies (IDs) throughout Australia. As the peak patient body we raise awareness about IDs in the medical and broader community and provide a range of information and resources for patients, their carers and families.
An Immune Deficiency is a disorder where the immune response (the body’s defence system) is reduced or absent. Primary Immune Deficiencies (PIDs) are caused by defects in the genes that control the immune system, so people with PID are born missing some or all of the parts of the immune system. Secondary Immune Deficiencies (SIDs) may be casued by treatment, transplantation, cancer or other diseases. IDs are not related to AIDS, which is caused by a viral infection (HIV). While not contagious, these diseases are caused by genetic defects and can affect anyone, regardless of age or sex. The World Health Organisation (WHO) recognises more than 200 immunodeficiency diseases.
There is no cure for the majority of IDs. IDs can be mild, severe and in some cases fatal. The main issue is increased susceptibility to infections affecting the sinuses, ears, lungs, bowel and skin. If not diagnosed early, these organs become permanently damaged. Even with treatment, the damage cannot be reversed. Many people with PID also have autoimmune conditions such arthritis, lupus and bowel disease.
PIDs include: Common Variable Immune Deficiency (CVID), Hypogammaglobulinaemia, Specific Antibody Deficiency (SAD), Hereditary Angioedema (HAE), Chronic Granulomatous Disease (CGD), X-Linked Agammaglobulinaemia (XLA), IgA deficiency, Hyper IgM Syndrome, Hyper IgE Syndrome, WHIM and Severe Combined Immune Deficiency (SCID).
Treatments include Immunoglobulin replacement therapy (IVIg in hospital, SCIg at home), interferon gamma injections, antibiotics, steroids and in some PIDs, bone marrow transplant.
IDFA was formed in 2005 with support from the IDF/KIDS foundation of New Zealand, which was founded in 1987. IDFA is part of the Immune Deficiency Foundation Asia-Pacific Alliance and a member of IPOPI (International Patient Organisation for Primary Immunodeficiencies). IDFA has the support of leading Immunology health professionals both in Australia, New Zealand and Internationally.
For more information visit www.idfa.org.au
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