Muriël Marks

My name is Muriël Marks and I am living in The Netherlands with my husband Frank, our 3 adult children and our Rhodesian Ridgeback Nena.

For many years I have been suffering from a plentitude of undiagnosed complaints. I had to visit a series of specialists, before I was diagnosed with Cushing’s (pituitary). Unfortunately ‘Plan A’ – pituitary surgery – was not a success. The symptoms remained. After weighing all the pro’s and con’s – with my endocrinologist – ‘Plan B’ was to remove both my adrenal glands. As a result, I now am a ‘primary adrenal insufficiency’ patient, also known as ‘Addison’s Disease’. And as such dependent on hydrocortisone and fludrocortisone. Therefore, my interest is for both the pituitary patient and the adrenal patient.

I joined the predecessor of WAPO – the Novartis’ patient advocates meetings – in 2013 as representative of the Dutch Adrenal Society NVACP.
In 2015 I became one of the founders of WAPO. Currently I am a member of the WAPO Board of Directors and active as an Executive Director. Besides this, I am also involved in fund raising, finances, projects and organizing the WAPO (e)Summits. My background as a secretary helps me to organize and support the WAPO community.

My goals are: “Raise awareness, improve attention for  good treatment, support to patient advocates and patients, especially in regions where this is not yet well-developed!”

Email: muriel.marks@wapo.org

Sheila Khawaja, WAPO Chair

I’m an acromegaly patient (in remission) and I’ve been a rare disease patient advocate since 2013 when I began my advocacy experience as a chair of a grassroots pituitary organization in north-eastern Italy; in 2014 I was invited to join the board of the national organization where I was active until 2020.

In 2016, I joined WAPO, first as a board member and then vice-chair.
Per May 1st, 2021 I have been chosen to follow-up on Andrei Andrusov, as Chair of WAPO.

My main purpose focused on raising awareness of the organization at conferences and workshops. Once WAPO was a more familiar name among multi-stakeholders, the focus shifted to identifying opportunities for the organization to be involved/co-create in a variety of projects with stakeholders.
In the past 4 years, I have had the opportunity to participate in events as a panelist, chaired conference sessions, as well as co-chairing workshops, and co-leading events with our partners, PFMD, the most recent topic being the Publication of lay summaries.

I have always wondered what my life would be like today, had I not been diagnosed with acromegaly: I can’t imagine it, but I’m certainly grateful that my patient journey and advocacy work has shown the importance of patients’ voices, the support of a community, and just how much more work needs to be done for rare diseases.

One of my favorite quotes: ‘One person can make a difference, and everyone should try‘ (JFK)

Email: sheilakhawaja@wapo.org  

Sandra Mesri

Sandra Mesri WAPO member

Sandra Mesri

My name is Sandra Mesri and I’m from Argentina. I’ve been married since 1998 and we have an eleven-year old girl, Sasha. I have a degree in business administration and have also studied international marketing.

I suffered from acromegaly for many years before the disorder was properly diagnosed: the cause was a pituitary adenoma, a benign tumor on the pituitary gland. Before the diagnosis, I had seen about 8 (eight) doctors and none of them understood what I had. It was only thanks to a fertility specialist that the proper diagnosis was made. I was operated and irradiated twice. I also remember that since the medication was not having any effect, I had to launch a legal battle to have access to a new medicine. I was the first patient in Latinoamérica who was treated with this medication.

In 2005 I founded Apehi, an organization aiming to help people with pituitary diseases in Argentina. A few years later, I also established the Alianza Hipófisis Latinoamérica, with the main purpose of supporting people with pituitary diseases in the region. I joined the predecessor of WAPO – the Novartis patient advocates meetings – in 2013, as a representative of Argentina; In 2015 I became one of the founders of WAPO. Currently I am a member of the WAPO Board of Directors.

My goals are: “Raise awareness on the most appropriate treatment and support to all patients and patient advocates!” I’m equally concerned about access to medications and that patients take their prescribed medication on a regular basis and not miss any dosages.

Email: sandramesri@hotmail.com

Susan Kozij

Susan Kozij

Susan Kozij

My name is Sue Kozij and I live in Queensland, Australia. I have worked and volunteered in a variety of positions. I hold a strong sense of community and have been recognized with Life Membership on two occasions, one being the Australian Pituitary Foundation.

In 1994, after several years of bad health, it was suggested that I may have Cushing’s Disease.  As the condition was cyclical (blood pathology turning on and off) it was hard to catch the proof, as the MRI showed no adenoma.  In 1996 I proceeded to pituitary surgery after two inferior petrosal sinus samplings.
I am pleased to say the Cushing’s never returned.

In 1997 I set up and co-ordinated the Queensland State Branch of the Australian Pituitary Foundation. I served as a Director of the Australian Pituitary Foundation for 11 years and retired in 2018. I’m honoured and proud to have been instrumental in advocating for new medicines to be subsidised in Australia during that time.  In Australia, there is a great network of patients and I thoroughly enjoy assisting, supporting and socializing with pituitary patients (adults and children) whenever I can.

My other volunteering is with a local community group which runs a HUB, and Men’s Shed.

I married Eric in 1979 and have two adult children.  My three grandchildren give me the greatest pleasure.

Email: sue.kozij@wapo.org

J.D. Faccinetti

JD was diagnosed with Acromegaly (a pituitary disorder) in October of 2010.  His condition was missed by doctors for 30 years, so he decided to do something to make sure that happens less. Read the acromegaly diagnosis story.  He co-founded Pituitary World News with Dr. Lewis Blevins, Medical Director of The California Center for Pituitary Disorders at UCSF in September of 2014. He has over 30 years of marketing management, communications, and research experience. He has worked for top national communication agencies and developed marketing, communications programs for international and national leading brands.

He is an expert in strategy development, communications, voice-of-the-consumer, and non-traditional qualitative research.