Andrei Andrusov

Andrei Andrusov WAPO member

Andrei Andrusov, Chairperson

 

My name is Andrei Andrusov and I am the Chair of the WAPO Board. As my brother is an acromegaly patient, I have been involved in the activities of Velikan, the Russian Pituitary Patient Organisation.

My main activities are currently related to innovations, startups, and investment in the areas of education. Prior to this, I have worked for 10 years in business consulting and in retail banking in the US, UK, and France. Thanks to my studies in maths, I love building excel models and all sorts of data analysis.

As the Chair of WAPO, I hold the Bord meetings and am responsible for new patient group searches and support.

My dream is to make pituitary patient organizations as efficient and good as for-profit organizations, so that all parties, including patients, sponsors, and healthcare authorities can clearly see the added value created by patient organizations for the benefit of society.

Email: andrei.andrusov@wapo.org

Muriël Marks

Muriël Marks WAPO member

Muriël Marks, Executive Director

My name is Muriël Marks and I am living in The Netherlands with my husband Frank, our 3 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 – as the Executive Director – raising funding and organizing the WAPO 2017 Summit. With my background as a secretary I really love to organize and build the WAPO team.

My goals are: “Raise awareness, perfect treatment and support to all patients and patient advocates!”

Email: muriel.marks@wapo.org

Sheila Khawaja

I’m Sheila Khawaja and I was born in Italy, even though my last name has Indian origins. I’ve been an acromegaly patient since 2003, when a macro-adenoma on my pituitary gland was first diagnosed. I was actually relieved to hear the diagnosis, as I finally had an explanation for my constant, excrutiating migraine headaches, foot and hand size increases and photophobia.
In 2004 I underwent surgery and then in 2005 Gamma Knife treatment. The disorder radically changed my general approach to life once I regained full control of it in 2012, when I finally obtained my Master’s degree in translation and interpretation.

Since 2013 I find myself in a very unique expert patient position: I’m the president of a regional affiliated patient organization (ANIPI-FVG) based in Trieste, Italy; I’m on the Board of the national organization (ANIPI-Italia) and represent it at international events; and in 2016 I became a Board member of WAPO. The uniqueness lies in the ability to observe and face the challenges that occur at the different patient/organization levels: regional, national and international.

My objectives are many, but could be summerized as follows: Empower patients and caregivers so they may become more proactive after their diagnosis through a constructive dialogue with HCPs; and ensure as many pituitary patients around the world are provided assistance and support through regional pituitary organizations during a very crucial period in their lives.

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 2014, 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