MENA Congress for Rare Disease is hosting the 1st Angelman Symposium in the Middle East North Africa (MENA) region in May of 2024. This event is the largest event for rare diseases in the region and brings international experts to one place.
FAST is honored to have Amelia Beatty and Sally Asfour speak at this inaugural event. Amelia is the secretary of the board of directors for FAST Headquarters and Sally Asfour is the treasurer for FAST Australia.
Amelia Beatty: amelia.beatty@cureangelman.org | Sally Asfour: Sally@cureangelman.org.au
We sat down with both of these women for a brief Q&A about this milestone event.
Amelia, can you share your experience about raising a child who lives with AS in this region and what this event means for the MENA community?
My husband Paul and I and our three sons moved to Amman, Jordan for Paul’s work four years ago. Before moving I was nervous about how our son Orion, who lives with Angelman syndrome, would be received. I have been pleasantly surprised by how welcoming and accepting most people have been. Of course we have had some negative experiences, like a mom telling her child at a park not to play with Orion because he’s “sick”. I also recognize that our experience as expats living in the region can be vastly different from the experience of local families, who may experience many more challenges. My hope is that events like the MENA Congress for Rare Diseases will break the stigma of being non-typical or having a family member who is and will start important dialogs about rare disease and how to bring the best care, treatment and acceptance to these people who have so much to contribute to their families and society.
Sally, what inspired you to join the list of speakers at this inaugural event?
I have a passion for speaking about what Angelman syndrome is and how my child is not defined by her diagnosis. Because I am originally from the Middle East but now living in Australia, I feel for so many families in the MENA region who get a diagnosis and do not know how to tackle it. I presume that many children would not be diagnosed until they are a lot older, given the diagnosis process in the region. I want people to know that with early intervention a lot can improve with your child. I want them to know it's ok to suddenly find yourself on a different flight path than the one you originally set out on. I want our children with Angelman syndrome in the Middle East to have a chance for a treatment and a cure when it is available.
Why are you both excited for this event?
Sally: To bring awareness about FAST and all the amazing contributions to finding a cure that FAST has made happen is something I am always excited about. To make this awareness in a place like the Middle East where my heritage is, is even more amazing.
Amelia: I am excited for two things in particular. First, I am thrilled to present the Angelman Syndrome Therapeutic Pipeline and FAST’s Roadmap to a Cure 2.0. In other words, I will share what FAST has been doing, where we are headed and how that can impact the people in the MENA region. The second thing I look forward to is connecting with families and experts attending the conference.
How did you both end up as speakers?
Sally: One of the organizers heard me speak on the Lebanese radio and reached out to me. She asked me if I would be interested in being a part of the conference, and I said I would have to think about it. I live in Australia, I have 3 kids, one lives with Angelman syndrome and a husband who works a lot. But when my husband overheard the conversation with FAST, he agreed that I should go and he will “just hold the floor here” or in American English, “hold down the fort.”
Amelia: One of the things I absolutely love is connecting with people. I’ve made a real effort to meet as many Angelman families in the region as I can and introduce them to each other as well. The last four years I’ve met some incredible AS parents who have become good friends. One of the Angelman moms I have gotten to know in Dubai is Fida Diyab. She has helped Professor Ayman El-Hattab organize the MENA Congress for Rare Diseases, in particular the Angelman Symposium. Fida knows that I serve on the board of directors for FAST, so she and Professor El-Hattab asked if I would speak at the congress about the work that FAST is doing. I am thrilled to have this opportunity to talk about FAST and how the work we are doing is relevant for the MENA region.
Thank you both for representing FAST. What does this opportunity mean for FAST and its mission?
Sally: Expanding the demographics for FAST, reaching more families who have loved ones with Angelman. Showing Pharma companies how many people that live with AS there are world wide can make them more enthusiastic about developing treatments and an eventual cure for our children.
Amelia: It is a pleasure to represent FAST at the MENA Congress for Rare Diseases. This will be an incredible opportunity for me to share FAST’s mission and see how we can partner to be more involved in the region. FAST is the premier patient advocacy organization working to cure Angelman syndrome. As the largest funder of Angelman syndrome research in the world, our goal is to drive forward transformative research and development programs as quickly as possible for those living with Angelman syndrome — regardless of age or genotype. We set the agenda for the therapeutic landscape for AS and help to accelerate it, from funding promising research at the academic level all the way to starting companies; create the necessary infrastructure outside of drugs and their development, from projects like our global registry to preparing for regulatory approval processes; and we activate and educate those in the worldwide AS community interested in and committed to clinical trials, and what the future of drug development will be for our loved ones.
Event description: This conference will be the largest event for rare diseases in the region and will last for 4 days during which more than 100 speakers, including more than 30 international experts, will give the most updated knowledge in more than 100 presentations, workshops, and group meetings in various fields related to rare diseases. This conference is a unique platform that brings all parties involved in rare diseases to one place to obtain the most updated knowledge, increase awareness, exchange experience, advance research, establish networks, explore collaborative opportunities, and provide better care for individuals with rare diseases. We look forward to seeing you among us at the MENA Congress for Rare Diseases.