A message from Alana: I am so happy to welcome Ellen Koekoeckx as FAST's new global advisor, responsible for our worldwide network and strategy. With more than a decade of expertise in the pharmaceutical sector, during which she has effectively introduced multiple drugs to the market, Ellen possesses a very impressive understanding of the entire drug lifecycle—from initial development through regulatory approval to securing reimbursement. She also happens to be one of us — mother to daughter Hazel, 5, who lives with Angelman syndrome. We are thrilled to have her aboard.
Name, Title at FAST: Ellen Koekoeckx, Global Advisor
A message from Ellen: When our daughter Hazel received the diagnosis of AS/UPD on December 2nd, 2021, my heart sank. The journey that followed led me to delve into everything related to Angelman syndrome, from therapeutic approaches to ongoing research and the quest for a cure. The discovery of the FAST website ignited a newfound determination within me. Before I knew it, my husband and I found ourselves on a plane to attend our very first FAST summit in Miami, where listening to Allyson and various researchers fueled my enthusiasm and hope. Witnessing the progress made in the past decade was inspiring, yet it became evident that there's still a considerable journey ahead, one that requires the collective support and dedication of families worldwide.
I'm thrilled to have discovered the incredibly supportive Angelman community, which feels like family to me. It's an honor to be part of FAST as a global advisor, working to extend FAST's impact worldwide.
How will you support FAST’s mission to a cure: In my role as a global advisor, I will actively contribute to FAST's mission by developing, implementing, and overseeing the organization's global strategy and network. My responsibilities include identifying potential partners, sharing best practices, and ensuring effective communication throughout the network. A key focus will be managing global chapters and ambassadors to extend FAST's reach to Angelman syndrome families worldwide. Additionally, I am committed to providing support to groups, aiding in the development of their knowledge and abilities to further strengthen the global movement.
What did you do before FAST? With over a decade in the pharmaceutical industry, I've had the privilege of contributing to the commercialization and launch of drugs with companies like AbbVie, Baxter, and Alcon. My focus has been on building collaborative relationships, working closely with diverse stakeholders, health care professionals and patient associations. I've been fortunate to play a role in bringing innovative products to market, striving to understand and address the unique needs of healthcare providers and patients. Beyond traditional responsibilities, I've actively engaged with healthcare professionals and patient groups, valuing their insights in shaping successful commercialization strategies. I believe my experience and collaborative approach can bring valuable contributions to FAST’s mission.
5 fun facts about you!
Meet the family! My husband Ferre and I have 1 daughter Hazel (5) who lives with Angelman syndrome. Additionally, my husband has 2 other children, Caspar (13) and Nethel (10) who stay with us every other week.
Belgian Base: Our home is in Leuven, Belgium, a vibrant university city known for more than academia – it's also the hometown of the renowned Stella Artois brewery.
Wanderlust: Before starting a family, I was an avid traveler, exploring both with friends and solo. A particularly noteworthy experience was a six-week solo adventure through Central America, creating new connections with people from around the globe.
Foodie: I have a genuine love for food! My friends regularly seek my advice on restaurants because I'm always the first to explore the latest dining spots in town. I enjoy experimenting with different cuisines and trying new dishes, though it doesn't always go as planned – leading to my husband graciously sharing his plate more often than not.
Fitness routine: I make a consistent effort to hit the gym regularly, incorporating Pilates and padel tennis into my routine. It's not a passion for sports, but rather a commitment to staying in good shape and ensuring I live a long, healthy life to be there for our daughter for as long as possible.