Andrei Andrusov

Andrei Andrusov WAPO member

Andrei Andrusov WAPO member

 

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

Ernest Lundu

Ernest Lundu wapo boardErnest Lundu is a Board member of World Alliance of Pituitary Organisations and Chairman of the Pituitary Community South Africa – a non-profit organisation aimed at easing the burden of pituitary conditions in South Africa through promotion of awareness, patient empowerment and advocacy.

Ernest was diagnosed with Acromegaly in 2002 at Baragwanath Hospital in Soweto, Johannesburg after years of incorrect diagnoses and wrong treatment. He had first treatment in 2006 when he underwent Transsphenoidal Endoscopic Surgery at Groote Schuur Hospital in Cape Town followed by external beam radiation in the same year to eliminate the residual tumour. Ernest founded the Pituitary Community South Africa in 2011 in order to look out for the interests of people affected by pituitary conditions in South Africa and foster relationships with medical professionals and pharma to collectively find solutions to improve the quality of care and eventually improve the patients’ quality of life. Ernest’s vision is to see improved access to quality healthcare in Africa.

Besides the voluntary advocacy work Ernest works as a Business Consultant specialising in company formations, tax compliance, financial reporting and capital sourcing for SMEs.

Email: ernest.lundu@wapo.org 

Malini Raj

Malini Raj

Malini Raj

Malini is the Treasurer and Non-Executive Director of the World Alliance of Pituitary Organisations and also Chairman and Non-Executive Director of the Australian Pituitary Foundation – not-for-profit organisatIon whose mission is to support and educate people impacted by pituitary conditions by creating awareness and providing information to the general and medical communities, acting as a collective voice for pituitary patients and their families.

Aside from these voluntary roles, Malini has worked for over 15 years in the financial services industry, in several domestic and international institutions in areas of Accounting, Property, Financial Markets, Project Management, HR, Business Strategy, Small Business & Change Management in Retail & Institutional Banking. She is now Head of Strategy for Multicultural Community Banking at a major financial institution in Sydney Australia.

Malini is also a pituitary patient – diagnosed with Cushings disease in 2013 and is passionate about driving strategies and initiatives to provide support to those who have experienced pituitary conditions and their families and promoting advocacy and awareness amongst the medical community and the public with a view of improving their quality of life.

Email: maliniwapo@gmail.com

Muriël Marks

Muriël Marks WAPO member

Muriël Marks WAPO member

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

Sandra Mesri

Sandra Mesri WAPO member

Sandra Mesri WAPO member

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

Sheila Khawaja

Sheila Khawaja WAPO member

Sheila Khawaja WAPO member

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  

Sonja Durinck

Sonja Durink WAPO member

Sonja Durink WAPO member

I am a Board Member of the World Alliance of Pituitary Patients (WAPO); actively involved as a Patient Expert/Ambassador with the Canadian Organisation for Rare Disorders (CORD); Treasurer for Alberta Pituitary Patient Society (APPS); Founder and President of the Canadian Pituitary Patient Network (CPPN).
Upon immigrating to Canada in 1998, life was great until I sensed health concerns around the turn of the century. I had been an adrenaline junkie, very fit, an ultra-distance race-walker… it had become a struggle to run between lamp-posts. For two years, my GP was adamant I had asthma. Upon requesting a second opinion, a Respiratory Specialist diagnosed a Carcinoid Lung Tumour and subsequently, a 4cm benign tumour was surgically removed.

Multiple lab tests, CT & PET Scans, Ultra-sounds, GP visits, alternative medicines, naturopathic remedies, invaded the next eight years as I became profoundly weak, fatigued, brain fogged, moody and grossly overweight. The day I stopped work, I asked the GP to check my records to ensure we had completed all hormone tests. Alas, two had been overlooked which within two days confirmed Cushing’s Syndrome. Medications did not correct the situation which left the only option available – a Bilateral Adrenalectomy (BLA). Ironically, six months post-BLA a second CNET appeared. At this stage, I am holding off on surgery knowing that the full removal of a lung will lessen the quality of life I currently enjoy.

I may not climb mountains anymore but I will “move” mountains. I have a vision and desire to ensure no patient is left behind. Early diagnosis is crucial with ease of access to Pituitary Centres of Excellence.

Email: sonja.durinck@gmail.com

Susan Kozij

Susan Kozij

Susan Kozij

Susan Kozij lives in Queensland, Australia. She has worked and volunteered in a variety of positions. She holds a strong sense of community and has been recognized with Life Membership on two occasions.

After treatment for a Cushing’s adenoma in 1996 Sue set up and co-ordinated the Qld branch of the APF which she continues to do since 1997. She served as a Director of the Australian Pituitary Foundation for 11 years. Sue has been instrumental in advocating for new medicines to be subsidised in Australia, and thoroughly enjoys her role in assisting, supporting and advocating for all pituitary patients (adults and children) within Australia.

Sue is married to Eric and has two adult children, who also assist her in her endeavours within the pituitary community.

Email: sue.kozij@wapo.org