I coordinate advisory board meetings and ensure that team members get the kind of training that will make meetings both productive and rewarding.
I also liaise with industry partners and other stakeholders to ensure they get the outcomes they are looking for from their interactions with HD-CAB.
I trained as a nurse and worked as an educator after completing a Diploma of Applied Science in Queensland, Australia. During my early career I experienced the complex challenges of HD long before I knew I was myself at risk.
After moving to London in the 90’s I began a 20-year career developing the medication delivery franchise for Baxter Healthcare in the UK, Eastern Europe, Middle East and Africa. More recently working for a Swiss medical device startup I was responsible for the clinical trial programme in the EU and US.
My father was diagnosed with Huntington’s Disease shortly before his death. It wasn’t until many years later that the secret was out and I was told that he and his father before him were affected. I immediately got tested and as one of four siblings was only somewhat relieved to get a negative result.
I joined the Swiss Huntington’s Association (SHV) in 2016 after discovering I was an HD family member. Thanks to the kindness and generosity of the SHV president I got more involved in local and international activities. Apart from serving on the board of the Swiss association I am supporting the efforts of both the International Huntington Association and HD-CAB.
I feel passionate about HD and privileged to have the opportunity to put my experience to good use at such a very exciting time for HD drug development.
I am a part of the operational team who organize, recruit, train and lead our advocates.
Originally from Texas, I currently live in Kansas City, MO (US) with my husband and young daughter. I received my degree in public relations from Kansas State University in the U.S. After several years as a professional, my interest to make a bigger impact redirected my focus to non-profits.
I most recently was the Executive Director for the Head for the Cure Foundation to advance advocacy and care for brain tumor/cancer patients and caregivers. I’ve been honored to join the team at HDYO and continue to focus my career around helping this community share their stories and become their own advocates to better understand, manage and cope.
While I do not have a familial connection to HD, I am passionate about helping others in this community. I’m continually learning the impacts of this disease, and how I can play a part in advancing the unmet needs of young people and families impacted by HD.
Only through shared experiences and bringing voices together can we make big change possible, and this group has the amazing opportunity to do just that. Joining forces across the globe can help communicate unmet needs to advance quality of life and care for the HD community, especially in the lives of young people. I’m honored to help support those efforts.
I am the communication manager, website designer and content creator of HD-CAB.
I graduated in Communication Sciences in Lisbon and I also studied Digital Marketing, because I felt the need to deepen my knowledge in this area.
I joined the European Huntington Association less than a year ago and start working as the Communication Manager. Which means helping with EHA and HD-Trial finder websites, creating new content weekly and designing our digital communication strategy.
Regarding the HD community, I am also taking part in projects like Moving Forward, Healthe-RND and HD-CAB.
I feel honored to be part of this new initiative with such a worlwide team of experts and advocates.
I am really excited to work with IHA and HDYO, while also learning everyday more about the HD community .
I am the communication manager and content creator of HD-CAB
When I turned 18, I moved to the capital of Portugal, Lisbon, to take a bachelor’s in Communication Sciences, since I knew from a young age I was a great communicator. To complement this, I also took a one-year course in Journalism and Audio-visual Communication.
I started working with International Huntington Association in November 2021, after meeting Claudia, the Communication Manager at European Huntington Association. I was hired for the same position but in IHA, where I’m responsible for the website design, newsletter, social media posts, marketing materials, and several other tasks.
Being able to join a group of people that is fighting for the same cause is a great opportunity to learn and grow. It’s also a great way to give back to this great community and put my skills to good use.
