Caregiver/Patient Support and Advocacy

Kristel Dalbec – Rive sud, Montréal

Ma fille de 4 ans mène actuellement un combat contre l’encéphalite anti-récepteur nmda. Je me donne comme mission de sensibiliser les gens à cette maladie pour qu’elle soit plus facile à reconnaître et ainsi apporter les traitements efficaces rapidement. J’ai fait des entrevues à la radio et au journal afin de faire connaître cette maladie rare. Je veux apporter du soutien aux familles et donner de l’espoir. La convalescence est Une montagne russe d’émotions et il faut pouvoir en parler pour garder courage et patience. Mon mantra: un jour à la fois !

Kristy Gevers – West Kelowna, B.C

Kristy lives in West Kelowna in the Okanagan Valley region of British Columbia with her husband. Her 18 year-old daughter was diagnosed with anti-NMDA receptor encephalitis in the spring of 2015 as the second case diagnosed and treated at the local hospital. Her daughter spent a total of six weeks in the ICU, two of which required her to be on a ventilator. Once her daughter received second-line treatment she regained consciousness, to begin the process of healing and re-establishing her ability to do everything from eating to speaking again.

Through a relentless course of research and being involved with the care team at the hospital, Kristy was able to have an active role in her daughter’s recovery, and finds herself often looking for ways to promote awareness of the condition. Through being a patient and caregiver advocate, she would like to promote the idea that each case and path to recovery is as unique as the patient. It is important for families to have support so they do not feel isolated throughout this journey.

Siobhan Brown – Johannesburg, South Africa

Ms Siobhan Brown is married with 2 sons.  Her oldest son at the age of 19 in January 2012 is one of the first positively identified cases in South Africa.  Her son has fully recovered and no teratoma was ever found. She serves as Caregiver/Patient support and advocate on the Foundation.  Ms Brown works as the bookkeeper for her husband’s company as well as administrating and fundraising for an NGO for field hockey development for underprivileged children aged between 7 and 18.   Ms Brown has a strong sense of civic mindedness and is passionate about helping others.

Nesrin Shaheen – Ottawa, Ontario, Canada

Ms. Shaheen is a director and founding member of the Anti-NMDA Receptor Encephalitis Foundation. Her daughter was the first positively identified case in Canada in January 2008. Since then, her daughter has had 4 relapses and continues to battle her way to recovery. She serves as Caregiver/Patient advocate on the Foundation. Ms. Shaheen holds an Honours B.A. in German Literature and Language from McGill University and a certificate in Publishing Studies from The Robert Gordon University, Aberdeen, Scotland. She has been an employee of the Department of Foreign Affairs, Trade and Development, Canada, since 1991. She is fluent in English, French and German.

Susanne Naaf – Rondeshagen (near Lübeck), Germany

Susanne Naaf lives in Germany and has two children; one grown-up son and her now teenage daughter  who was approximately case number 300 world-wide diagnosed with Anti-NMDA Receptor Encephalitis.  She was diagnosed two months after she became ill in August 2009 at the age of seven.

Her treatment at the time consisted only of prednisolone during the acute stage due to insufficient knowlege about the illness and possible treatments at that time.  Nevertheless, she has made a nearly full recovery within the following three years. Only mild cognitive and memory issues are still present.   Five years after onset, the antibody test (serum) came back negative for the first time.

Until 2010 no information about the illness was available in the medical literature, so Susanne Naaf started her extensive private research, simultaneously looking for other affected people worldwide.   She built the German website www.Anti-NMDA-Rezeptor-Enzephalitis.de, together with Tanja Haas, a mother with the same interest in communication and acquiring knowledge.

Susanne Naaf  has been supervising and administering this group since 2011 and is engaged in raising awareness for this illness (TV, newspaper) and supporting patients and their families.

Continuing medical research and progress in treatment is her heartfelt wish for all currently affected and prospective patients.

Pilar Castillo Meier – Washington, D.C., U.S.A

Pilar Castillo Meier recently retired from the Inter-American Development Bank (IADB), where she was a Senior Advisor at the Multilateral Investment Fund (MIF).   The MIF promotes broad-based economic growth through private sector development, particularly microenterprises and small businesses in Latin America and the Caribbean.

She holds a Bachelor of Arts degree from American University, a Masters Degree in Organization Development and Strategic Human Resources from the Johns Hopkins University.  Pilar is fully bilingual in English and Spanish.

Pilar is a strong believer of community service. She is a founding member and past president of the Latino Student Fund (LSF) and a member of the Levine School of Music Council of Advisers, both organizations provide educational opportunities to low-income children. Pilar was President of Children’s International Summer Villages (CISV), an organization which works on conflict resolution through peaceful strategies.  At the IADB, Pilar lead the Shoebox Project, an initiative for the homeless, and was one of the pioneer members of the IDB-DC Solidarity Fund Consultative Committee, IADB’s grant making process and resource allocation.  Pilar was also a member of the Board of Trustees of the Washington International School.  She chaired the Enrollment Management and Marketing Committee which was aimed at maintaining a socially and economically diverse student body and, to that end, fundraising for financial aid.

Pilar was the winner of the 2007 IADB Solidarity Award for her volunteer work in raising funds and developing networks and strategic partnerships that have provided opportunities for underpriviledged families in the D.C. area.

Pilar’s daughter, Annalisa, was diagnosed with anti-NMDAR Encephalitis in September of 2008, when she was 18 years old, on her first day of college.  She was comatose for about 10 weeks and minimally responsive for about four weeks.  While at New York Presbyterian Neurological Intensive Care Unit, she underwent plasmapherisis, IvIg, removal of ovarian teratomas, and chemotherapy (Rituximab).  Annalisa was transferred to National Rehabilitation Hospital in Washington, DC, where she spent three months in inpatient rehabilitation (to relearn the basic skills, walk, talk, eat, etc.) and a year of outpatient therapy (to relearn skills to reintegrate to the community).  After therapy and  Annalisa’s relentless determination and hard work, she recovered and went back to college.  She successfully graduated from Columbia University with a BA and a Masters Degree in International Affairs in 2015.  Pilar has been with Annalisa throughout her entire illness and recovery process, which gives her insight into caregiving for a loved-one suffering from Anti-NMDAR encephalitis.

Linda Nourse – Montréal, Québec

Born and raised in Montreal, Ms. Nourse is dedicated to volunteering, having worked with such organizations as Woodgreen Community Services in Toronto (serving newcomers to Canada) and Visions at Selis Manor in New York (serving blind and visually impaired residents).

As the mother of an adult son currently battling Anti-NMDA Receptor Encephalitis, Ms. Nourse is now turning her attention to the crusade to find the cause and cure for this life-altering disease. As a Caregiver/Patient Support and Advocate, she looks forward to sharing with and helping other families to the best of her ability.