IPWSO offers educational scholarships to its international conferences when finances allow. A recipient becomes a Fellow after his or her report from the conference has been received outlining how the information will affect his or her continued development and understanding of Prader-Willi syndrome.
Augustina D'Cunte (Argentina) Scholarship to the PPCB Conference, Munich, August 2018
Augustina is a psychologist working for the Spine Foundation. She writes: Being part of the 5th Caregivers' Conference was a great experience for me, both personally and professionally. . Travel to a country so far to meet such lovely people that do not only the same job, but similar to what we do, gives great strength and comfort in learning and perfecting the work we do. (read her report)
Do Thuy Lan (Vietnam) Scholarship to the PPCB Conference, Munich August 2018
Lan writes: In 2017, I knew about IPWSO and Morning Star Center also had a 10 year old student with PWS. Therefore, I started learning about PWS. I was very happy to receive the grant of IPWSO to attend the conference on PWS in Munich because I am very interested in deepening my knowledge on PWS and the methods of detection and intervention for this syndrome. My utmost goal is to use my learned knowledge in cooperation with Morning Star Center’s therapists and teachers to build up effective intervention programs to reduce the stigmas caused by PWS for children affected by this syndrome, to create chances for them to integrate into society and raise community awareness about PWS so that PWS community will receive more support from society and the discrimination against them will be reduced. Besides, the knowledge learned from the conference will help me a lot in providing useful consultancy to parents of children affected by PWS, enabling them get involved in intervention process. However, many families of children with PWS are facing financial difficulties. They have to work hard to earn a living and support their family, therefore, they have very little time spent on their children. (Read more)
Gabriella Lemmers (Brazil)
I am mother to a 4 yr old boy. I have a group Cardápio da vida (Menu of Life) to support families around Brazil, I have a website and I promote some walkings. We are in the process of forming an association. I also have a blog about nutrition and tips of meals and diets. I also got patients together to be treated in one place in Rio and in São Paulo so professionals could have more knowledge and patients better treatment. We try to help patients with treatments or exams not covered by the government program, gathering money to pay for them. When I have a chance I try to visit other families here in Brazil and already happened in Holland, EU to visit a Prader-Willi House always bringing news to my group.
Gloria Queipo (Mexico)
I am MDPhD Human Genetist, molecular biology I have been working with PWS since 10 years, 2 years ago I am the delegate from Mexico, I work with Maria Jose Foundation. I perform the molecular diagnosis and work close with the nutrition professional. I try to get medical attention for all the patients around the country, If the patient live near to Mexico City I made all the arrangements in my hospital to received the medical attention. Every year I work with the Dr. Angulo with the Mexican patients who is great for me.
Marta López (USA/Spain)
I am a M.A student of Developmental Psychology at Teachers College, Columbia University and I have been collaborating with the Prader-Willi Foundation in Spain (Fundación Síndrome de Prader Willi) for which I am currently the caregivers delegate. I have collaborated with them for five years in leisure time activities with people with PWS, participated in support groups for parents, and I am part of the multidisciplinary team for supporting families with PWS. I have participated as a speaker in the last two Symposiums about the Syndrome celebrated in Pachuca, Mexico in 2014 and 2015. I am planning in keep working with the syndrome back in Spain when I finish my master’s degree at Columbia. (Marta's report - Espagnol - can be seen here)
Asmaa Chakkour (Morocco)
Sister to a young man with PWS. Asmaa has organised meetings in Morocco of families with children/adults with PWS and very recently formed the first PWS Association there. Working under the guidance of Professor Ahmed Gaouzi, she is working towards holding a PWS conference in conjunction with PWSA (France) later in 2016.
Fernando Briones (Spain)
I have a son with PWS. I have been speaker in some PWS Conferences around the world; at schools or other institutions when asked for. I give online support to Spanish speaking families. I have been a coach for PWS support groups for parents of young children and toddlers. I have assisted at all IPWSO Conferences since Romania, particularly with our Spanish speaking families, and tried to transfer all knowledge in Spanish via Youtube, and through social media.
Simone Ito (Brazil)
I am a paediatric endocrinologist and I work in Sao Paulo University – Brazil. In the beginning of 2015, we started a PWS outpatient clinic in our hospital because of the lack of good control in our PWS patients in our general paediatric endocrinology clinic (with 60 patients) and I was invited to help organizing the clinic and collect our patients’ data.. Nowadays we have a multidisciplinary team with 3 paediatric endocrinologists fellows, dietician, neurologist, psychiatric, physiotherapist and nursery. But we think there’s much more we can do for them and there’s much more we have to learn about them. Our aim is to be the pilot clinic in our country to help diffuse an adequate management to our patients, their parents and other endocrinologists.
Neil Gumley (Australia)
Neil lives and works in Melbourne, Australia and manages the only PWS-specific home there. He wishes to work on the development of future homes and continue working with people with PWS. He has been a caregiver for 15 years.