Thank you



Supporting families living with a bleeding disorder is just a part of our crucial work as the national peak body. Your generous support also enables us to advocate for our community, support research and produce much needed education resources. 

I am writing to say THANK YOU.   I am so grateful for your kindness and generosity throughout the last year. I want to update you on how your support is helping to improve the lives of people with bleeding disorders, and their families and carers. 
 
What strange and difficult times we are living in, with every corner of Australia at different stages of a Covid response, and many people around the country also coping with the impact of bushfires. At HFA we are united with our foundations to supporting them and our community.  We continue to work remotely and operate as closely to business as usual, although we are unable to hold our usual fundraising events.
 
Your donation during 2019/2020 meant we have been able to make a real difference. With your help, we have been able to improve the lives of many people in our community. I am truly grateful to you.
 
We undertook two very important projects during the year.  It is an exciting time in gene therapy for haemophilia globally. For so long a ‘cure’ for haemophilia has been a dream but in recent years some international experimental gene therapy studies have  demonstrated some success and there are now more clinical trials offering great promise.  As gene therapy raised lots of questions for people with bleeding disorders in Australia we were pleased to produce a new Gene Therapy resource to provide information and answer some of their questions and to explain the relevance of gene therapy to them now and in the future.
 
As new treatments are leading to better health outcomes for people with bleeding disorders, it is wonderful they are living longer. But for many this also raises concern about how they will manage and whether they will have the services and care they may need as they get older. Our consultation with the community and their treating health professionals about this lead to the publication of the Getting Older Report which will be used for HFA advocacy to governments for best practice treatment, care and services. We also launched  the Getting Older Hub on our website so timely and relevant information will be available by our community members if it is needed.   
 
The 19th Australian Conference on haemophilia, VWD & rare bleeding disorders was held in Sydney in October 2019 with the theme Challenging the Status Quo.  Our conferences bring together people with bleeding disorders and their families and carers, as well as health professionals, government policy makers and the pharmaceutical industry. Over the two days of the conference people shared their experiences and participated in a lively education program. We have no doubt the discussion and debate has created pathways to a better future for our community members and their families and carers.
 
With your help, HFA supported several camps and family days across the country. Together we have been able to make a real difference. Thank you.
 
Peer support groups in our community are critical. Sharing knowledge is empowering.  Family camps, family days, men’s and women’s support groups, and regional outreach meetings really do make a difference to the lives of people living with bleeding disorders. People learn new skills from one another, and this helps them become more confident and independent.
 
The importance of our camps for children and families cannot be underestimated. Children form life-long friendships with others who have the same challenges and understand what it’s like to live with an as yet incurable condition. Parents discover new activities that will not put the safety of their child at risk – instead they will build confidence and self-esteem.
 
Most of our foundations were lucky enough to host their peer support programs in the past 12 months, before lockdown, and if not they have been postponed to a later date.
 
My job, with your support, is to ensure there is help available for children as they adjust to changes in their treatment as they grow up and transition through childhood and become young adults.
 
I know you will agree that treatment and care has come a long way in the past 30 years. Because of this, the challenges our children will face as an adult will be very different from those of the previous generations. A current priority is to understand and respond to their needs so they live healthy, fulfilling and active lives. 
 
Your generosity ensures that we can continue to support and provide services for people with a bleeding disorder at every age and stage of their lives.
 
Our Haemophilia Foundation Research Fund has been making distributions for 25 years. This year we have contributed to Dr Nicholas Hunt’s work at the ANZAC Research Institute in Sydney where his team is investigating whether the nanomedicines they’ve developed for gene therapy could cure haemophilia A.  This is exciting local research and we look forward to hearing more about his progress with this work.
 
With so many people placing their trust in us, I take our responsibility very seriously. I will be continuing to seek donations from our generous community of supporters, as well as looking at other sources of funding.
 
If you want to know more about our work in this past year, and our plans moving forward, please do not hesitate to call me on 03 9885 7800 or email scaris@haemophilia.org.au
 
Thank you again for all you are doing to support our community.
 
With my very best wishes
Sharon Caris
Executive Director

 

We are so grateful.   What do you think about us?   I would love to know why you support HFA, what you think of our work and any other feedback you would like to share about the issues faced by people with bleeding disorders. Please share your comments below.   If you would prefer to speak to me directly, then I would be happy for you to call me on 03 9885 7800 or email scaris@haemophilia.org.au.