Muriël Marks

My name is Muriël Marks and I am living in The Netherlands with my husband Frank and our Rhodesian Ridgeback Nena. We have 3 grown up children. 

After many years and medical complaints, 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.

In 2012 I became involved as a volunteer at the Dutch Adrenal Patient Society. In 2013 I joined their Board, as well as the international patient advocates meetings which Novartis organized. From 2014 onwards, various steps led to the founding of WAPO. Currently I am a member of the WAPO Board of Directors and daily active in my role as Executive Director. Besides this, I am also involved in fundraising, 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!”

Sandra Mesri

My name is Sandra Mesri (married and 1 daughter). It took many years before my acromegaly was properly diagnosed. After meeting with eight doctors, a fertility specialist made the proper diagnosis. After a legal battle, I got access to a new medicine, because the usual medication had no effect, and this made me the first patient in Latin America who was treated with this medication.

In 2005 I founded APEHI, to support people with pituitary diseases in Argentina. A few years later, I also established ‘Alianza Hipófisis Latinoamérica’, aiming to help people in surrounding countries.

Since 2013 I am involved with the predecessor of WAPO, in 2015 I became one of the founders of WAPO. Currently I am a member of the WAPO Board of Directors. I have a special interest in biosimilars; and have a degree in business administration and have also studied international marketing.

Clive Deverson

Clive is a senior healthcare communications leader with 30 years’ experience of the pharmaceutical industry. He started in Global Medical Affairs in the early days of the HIV epidemic when patient advocacy was in its infancy, then spent over 20 years in executive leadership roles in Medical Communication Agencies.

His journey has provided him with an exceptional combination of experience spanning Global and local medical brand strategy, medical education, promotional campaigns, publication planning, behavioural research, consulting, market research, market access, professional and public relations, digital solutions and events. He has a proven reputation for developing scientifically compelling solutions that engage audiences, with a particular interest in rare diseases.
In his spare time he enjoys trying to keep up with his three children in their 20’s, loves playing saxophone in rock/blue/soul bands and occasionally attempts triathlons at a (very) amateur level.

Clive is delighted to have recently been appointed to the Board of The World Alliance of Pituitary Organisations (WAPO) as strategy, communication and funding Advisor.

Leslie Edwin

My name is Leslie Edwin and I live in Atlanta, Georgia (US) with my daughter and two dogs.  I was diagnosed with Cushing’s Disease in 2012 and began a complicated medical journey that continues to this day – I no longer have Cushing’s but I have many common unpleasant long-term effects of Cushing’s plus Panhypopituitarism.

Previous to my diagnosis I worked in finance, then culinary and event planning.  I began volunteering with the Cushing’s Support & Research Foundation in 2014 and became its President in 2018.  Throughout the pandemic we worked with our membership to create detailed quality of life research from our point of view which told a story none of us had seen in existing literature.  We started sharing our work and talking about it, and it wasn’t long before we were on a path to build a US and worldwide patient registry which we expect to start in 2023.

Robert Brady

My name is Robert Brady and I live in Roscommon (Ireland ) with my wife Breege and son Cormac.
In 1991 I was diagnosed with a non-functioning tumor on the pituitary gland called a ‘Craniopharyngioma’. In 1992 I had surgery (craniotomy) to remove the tumor. During this surgery, my pituitary gland was also removed and as a result I have adrenal deficiency, Panhypopituitarism and bitempoal hemianopia.
In 1994 I had a regrowth of the tumor and received radiation treatment.
As a result of my condition Panhypopituitarism I have to take hormone replacement medicine daily.

In January 2015 I became a volunteer Area Coordinator for Ireland with the Pituitary Foundation. As coordinator I have established an independent website, and a social media presence, I organize annual online and in-person meetings for patients and medical professionals.

My goals as a WAPO Board member are to support the Board and continue to improve awareness and reduce patient diagnosis time, with a special focus on Craniopharyngioma and Panhypopituitarism.

Want to know more? 

When you are interested to support us, we are happy to set up a call and see how we can collaborate.
Please introduce yourself in an email, and send it to mail@wapo.org
We will soon contact you to set up a call.

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