ASCA AGM 2019 – President’s report

Good evening ladies and gentlemen,

It is my pleasure to present our first Annual Report to our members and special guests in attendance today at the Australian Sickle Cell Advocacy Inc annual general meeting (AGM).

Firstly I would like to thank God for making it possible for us to have this event.

I would also like to acknowledge the traditional owners of this land past, present and emerging.

2019 has been a very busy year for us. We have been formally registered as a not for profit organisation after operating as a social media initiative for over five years, we have also participated in a lot of events as well attended a few meetings around the world. We have engaged with different stakeholders and policymakers.

Events during the year

The Committee arranged and participated in many events this year, some of which included:

  1. Formal registration of the organisation
  2. The official launch of the organisation with over 140 people attending
  3. Engaged with different multicultural communities to raise awareness about sickle cell disease (SCD) and encouraging people to get tested for the sickle cell trait (SCT).
  4. Driving the implementation of the SCD treatment guidelines (process has started)
  5. Engaged with different State and Federal ministers who are advocating for better services for people affected by SCD on our behalf
  6. Started the first-ever sickle cell disease support group meetings in Australia
  7. Being recognised by the office of Federal Minister of Health
  8. Ongoing Engagement with the Federal Minister of Health regarding SCD in Australia
  9. Recommendation to improve SCD services in Australia sent to the Federal Minister’s office
  10. Engaged with makers of hydroxyurea to have other doses of this drug available to patients in Australia
  11. Ongoing Engagement with major hospitals in Australia to raise awareness on SCD / SCT
  12. Our work recognised in the Federal Parliament and invited to question time in Parliament
  13. Represented Australia at the Annual Sickle Cell and Thalassaemia (ASCAT) Conference in the UK
  14. Represented Australia at the first-ever Global Alliance of Sickle Cell Disease Organisations (GASCDO) in Amsterdam
  15. More people able to discuss SCD in Australia more than ever before based on the different social media communications and the professional page LinkedIn
  16. In the process of producing an e-learning course in Sickle Cell Disease in collaboration with Australian Primary Health Care Nurses (APNA)
    • This course will be available to all primary health nurses who are members of APNA.
  17. Engaged with the Royal Australian College of General Practitioners to include newborn screening for sickle cell disease. “Newborn screening provides early diagnosis for children with sickle cell disease (SCD), reducing disease-related mortality” ( Ofelia 2019).
  18. SCD awareness presentation at different organisations like RMIT University and Ethnic Communities Council of Victoria

As we embark on this path again this year, we welcome all members and volunteers and non-members to join us at events and to provide suggestions and assistance to run further events that may appeal to ASCA.

Events planned for 2020

In the coming year, we have lined up a few events and we would like you to join us. These events plus others will enhance our community engagement and will assist us in upholding our objectives.

The plans include:

Other Updates

We have updated our constitution to use our own rules and the positions today will be our standard organisational positions until such a time that we decide to change again.

After one year of operating, we would like to review our Board of Directors and this will be done at the next Board Meeting in April 2020.

We have partnered with local organisations and international organisations to enhance SCD awareness

We have become members of local organisations and international organisations.

We are in the process of applying for our charity status which will make it easy for us to find sponsors who can support our work.

We do not get any State or Federal funding hence getting this status will enhance our work.

Member interaction

We continue to interact with our members through continuous social media interactions and a newsletter update every two months. Our social media accounts include Facebook, Instagram, Twitter, and LinkedIn. We have over 6,500 followers across different social media platforms. We have 50 signed up members.

I would like to extend a warm invitation to all of you to join us, our membership is still free. We meet every last Sunday of the month.

Special thank you

I would like to thank the ASCA Board Members, Executive Members and Committee Members for their support and hard work during the past year. I would like to specifically mention and sincerely thank Dr. Marguerita Evans-Galea and Dr. Sarah Tregenza who have been helpful in directing us towards the right direction to achieve our optimum good during the last year. I really appreciate your help, guidance, and support across all our social media platforms. I would also like to thank all the other Board Members for your selfless acts to support ASCA.

I would also like to sincerely mention and thank Mr. Peter Leos, Mrs. Nathalie Kapuya and my husband Mr. Preston Nsofwa for your continued support and help in shaping our organisation, from late nights doing newsletters, late nights and weekends preparing the SCD course, planning the support group meetings, these and more, thank you.

I also would like to give a special thanks to Ms. Mayase Jere who connected me to some of the wonderful people in this room and for your continued support during the year. I would also like to thank you for organising the venue for us today, very much appreciated. Lastly to all our ASCA Executive and Committee members, Luigi, Christinah, Anne, Kabaso, Joseph, Ade, Mercy, Tayo, Chileshe, and Vincent, thank you for your all year round support by attending our meetings and all the events, for your contribution during our numerous meetings and everything you do. I admire your enthusiasm and selfless acts, bearing in mind that we are all doing this on a volunteer basis. Thank you from the bottom of my heart.

Lastly, I thank you all for attending our AGM, we appreciate your support.

Please follow us on our different social media platforms and we would like to invite you in advance to our AGM next year.

Agnes Nsofwa RN, MN, BBA
Founder and Executive Director
Australian Sickle Cell Advocacy Inc