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 - download 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.

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