2019 Conference Scholarships
A generous grant from Friends of IPWSO (USA) enabled 11 delegates to be awarded IPWSO Scholarships for travel to the 10th International Prader-Willi Syndrome Conference held in Havana, Cuba, 13-17 November 2019.
The grants were awarded to:
Juan Carlos Reyna (Mexico)
I work at Fundación Mara Jose foundation allied with IPWSO. I have given lectures about physical activity and therapy to parents with children with Prader Willi syndrome and I have attended family reunion events, where I actively interact with parents, resolving doubts and clarifications regarding physiotherapy in people with Prader Willi. In the same way, I take a therapeutic follow-up with families that have children with Prader Willi Syndrome in Mexico City at therapeutic work events. Currently the María José Foundation is the only one with written records of people with Prader Syndrome in Mexico, 184 people already diagnosed have been counted. Unfortunately, in Mexico there are no more organizations that support the Prader Willi Syndrome and their families, in the health sector, medicines maintain high prices and there is a certain disinterest on the part of Mexican society, regarding the Syndrome. His report is here.
Jorge Estanislao La Serna Infantes (Peru)
I am a clinical geneticist and I want to create a multidisciplinary team in Peru to help people with PWS. Peruvian PWS association. I have attended the Argentine PWS meeting (Spine). There are more than 20 families with PWS. Here we have MLPA, methylation test, microarray test to diagnose it. The services are at hospitals like INSN – Breña / San Borja, Almenara and Rebagliati hospitals and private clinics. We have formed a South American professional and caregiver’s network in Argentine. We are going to form a multidisciplinary and international team to help our patients and families in our respective countries. After that we are going to start with publications and register of patients. His report is here.
Molelekeng Suthansa (South Africa)
I am a clinical psychologist with an interest in genetic disorders. I did my PH D studies on PWS and I am currently assisting families who have children and adults diagnosed with PWS. I have worked with Engela Honey, IPWSO’s professional representative for South Africa. Her report is here.
Nikolinka Yordanova (Bulgaria)
I am a last year resident medical doctor in Pediatric Endocrinology Department and first year PhD student. My PhD thesis title is “Metabolic risk and body composition in children, born small for gestational age with genetic confirmation for PWS.” Our Clinic has started to take care of PWS patients since 2000 and organised first translations of IPWSO patient materials in Bulgarian. My interests are in rare genetic syndromes with short stature and obesity. I work at the University hospital “Sveta Marina”, Varna, where we take care of 19 patients with PWS. We are looking for additional detailed information to increase our knowledge and help our patients. Bulgaria is a very small country with not a lot of opportunities in this field. Her report is here.
Denitsa Dimitrova (Bulgaria)
We have an Association which has not been active for a while, but together with another mum Monika, we are trying to reactivate it. Last month we had the first meeting with all the families in Bulgaria and our special guest was Dr Suzanne Blichfeldt from Denmark, a member of IPWSO and Vice President of the Clinical & Scientific Advisory Board. There are no special services in our country and the reason is because people do not know much about the syndrome. Last year I attended the PPCB meeting in Munich with the support of The Bulgarian Endocrinologic Association. When I came back, we had the first meeting for our families, I made a presentation from what I learned in Munich and from here we began to revive our PWS Association. Her report is here.
Anil Choubey (India)
I am co-trustee and co-founder of Indian Prader-Willi Syndrome Association (IPWSA) in 2011. IPWSA conducts family meetings and doctors’ meetings in various parts of the country on Prader-Willi Syndrome for awareness of families and medical professionals. Last year in 2018, it was conducted in September in New Delhi, Kolkata, Bangalore, Mumbai during the visit of Australian PWS President and IPWSO board member James O’Brien to India. His report is here.
Mario Arnoldo Mendez (El Salvador)
Parent, son 27 years
I am a psychologist and my wife is an educator. From 2002 to 2008, after attending Delegates meeting at BIRD (Italy), I served as a liaison for families with SPW El Salvado. Together with my wife, we distributed written information created by IPSWO among the medical guild, health professionals, educators and interested family members. We created a help and therapy group for parents. From 2008 to date, together with my wife we have created a network of social and mental health support for other families in our country (3 families identified at that time). In recent years we have created a support group for people with disabilities, which seeks to provide other families with information on legal procedures that allow obtaining the benefits that the law offers to people with disabilities: medical insurance, parental authority, pension… As a parent and friend of other parents we looked for information that would help to have a better quality of life for our children. Together with my wife we have transmitted this information to health professionals, educators, family and friends. His report is here.
Maria Elvira Garcia Ronderos (Colombia)
Parent (son 25 yrs)
I’m the president of the Colombian Prader Willi Association and I was the main organizer of the International Prader Willi Symposium which took place in Bogota, Colombia the last 22nd and 23rd of March ate the Universidad Javeriana de Bogota. With the support of the family of ACSPW we created the You Tube channel of the Association through which we invited monthly an expert of the PWS to talk to the audience and resolve any questions. I also wrote a book named “El Ladron de Sonrisas” which tells the history of my son with PWS and how we work with our family for his every development. With the book I had the opportunity to speak about that and about my knowledge of the PWS in different scenarios, in TV News Programs, in the Radio and in Local and National press. Her report is here.
Zurab Abjandadze (Georgia)
I am Zurab Abjandadze 41 years old from Georgia. I have wife and the only one son Noe Abjandadze 3 years old with PWS. This conference is opportunity for me to get more objective and qualified information, which will help to my family to solve the daily problems. After conference I will arrange a meeting with the Georgian PWS Association to share all my knowledge and experience to the parents with the same problems. His report is here.
Esther Maina (Kenya)
I am a Medical and Molecular Geneticist from Kenya. Previously while in the UK, I spent part of my postdoctoral experience working on the molecular genetics of PWS. Upon returning back home to Kenya, I found that there were no documented cases of confirmed PWS cases even in the greater East African region. To that end I decided to approach Kenyan paediatricians with a questionnaire on diagnosis of a PWS baby and the management therein. As the conference was approaching, I had sent out my questionnaire to around 20 paediatricians and so the conference came at a fantastic time as I was starting the PWS work in Kenya. Her report is here.
Sandra Costi (Argentina)
For 10 years I have been a member of the Asociación Argentina de Prader Willi , actively participating in the events and activities that take place here in our country and I am currently the President of the Asociación Argentina SPW since 2018. I also lead a support network for parents from all countries, with more than 200 members in order to give emotional support and contribute my experience as a mother of a girl with Prader-Willi syndrome. Currently the network became part of the Spw Association and has 500 members from all countries.
We only have a referral public hospital in Buenos Aires (Garrahan Hospital) and an interdisciplinary center (SPINE Foundation). There is no national census about rare diseases in our country, so we do not know how many affected exist in Argentina. Her report is here.