Supporting PWS events and projects in 2023
IPWSO is delighted to announce we have awarded grants to support PWS events and projects across 11 countries in 2023.
Congratulations to all the grant recipients! These are exciting initiatives, and we look forward to hearing about your progress and sharing your stories. The IPWSO Microgrants and Conference Funding is made possible by the generous support of Friends of IPWSO (USA).
A new round of funding for 2024 will be announced later in the year. Sign up to our newsletter to receive more information.
Argentina: Fundacion SPINE
The SPINE Foundation in Argentina provides continuous healthcare services and support programmes to 33 parents and families. They have received funding to purchase sports and musical equipment for their Winter Camp. The programme will consist of recreational activities conducted by physical educators and therapists who specialize in PWS. The event will take place in the school holidays, as during this period parents may be particularly challenged to maintain the level of structure and routine that is required to best meet the needs of children with PWS. The Winter Camp will take place in Buenos Aires and is organised in collaboration with the PWS Association Argentina.
Brazilian Prader-Willi Syndrome Association (SPW Brasil)
SPW Brasil was founded in 2016 and is in contact with around 500 families, although they believe many more people remain undiagnosed. The association is delighted to receive funding to host its first SPW Brasil Symposium, the theme of which will be “New Perspectives of Prader-Willi Syndrome”. The association hopes to attract delegates from all over Brazil and the lectures and workshops will focus on best practice, behavioural challenges, treatments, medication and the transitional years. The lectures will be recorded and made available on YouTube.
PWS China has recently joined our IPWSO community. A grant from the IPWSO Conference Fund will help the association deliver seminars for primary care physicians and PWS families in Hangzhou, Zheijang Province, and in Shanghai City. The focus will be on early diagnosis and treatment, and the importance of accurate newborn screening. Speakers will include endocrinologists, neonatologists, neurologists and professionals in respiratory medicine. The presentations will be recorded and made available online.
Walaa Mohamed from Egypt is a mother of a 14-year-old boy with PWS. Walaa is developing a growing network of parents, through Facebook and WhatsApp. The Microgrant awarded will assist the group to set up an official PWS Association, a much needed development allowing formal communication channels to be established with the Egyptian Ministry of Health. An official association will also enable the group to bring together professionals, parents and caregivers from Egypt and other Arab-speaking countries to the first-ever PWS Egypt Association Workshop; this initiative has also benefited from support from the IPWSO Conference Funding.
Hungarian Prader-Willi Association (HPWS)
HPWS was founded in 2019 and is in contact with around 50 families. The number of people with PWS is not officially known and there is little by way of social service support in Hungary. HPWS received funding to organise its first Summer Camp for children with PWS and their parents. This will provide a much needed opportunity for children and young adults with PWS to meet and develop friendships, and for parents to share experiences and learn about best practices.
India: Paediatric Endocrinology Team, Aster Hospitals, Bengaluru
The Dr Jahnavi Muralikrishnan, Fellow in Paediactric Endocrinology, and the team at Aster CMI Hospital, will use their grant to undertake a research study that will provide important insights into the effectiveness of a patient education booklet, which will be produced in four native Indian languages – Kannada, Tamil, Hindi and Telugu. The booklet aims to improve the knowledge, attitudes and practices of families of children with PWS. The team will collaborate with the Indian PWS association on this project and will also deliver a hybrid conference for health professionals and families in Bengaluru. The conference will address, amongst other topics, sleep disorders, diet and nutrition, psychological issues and orthopaedic problems. Sessions will be recorded and lectures compiled and shared post-event.
Malaysia: Taylor’s University Team in collaboration with PWS Malaysia
Wan Puspa Melati Wan Halim, Clinical Sociologist, Associate Professor and Head of Department at the School of Liberal Arts and Sciences at Taylor’s University, Malaysia, and her team, have received Microgrant Funding to establish a face-to-face support group and a WhatsApp group that will provide a safe and supportive space for parents to share their experiences, gain knowledge, and build coping strategies to manage their children in the critical transitional teenage and young adult years. Parents often struggle with managing issues around relationships, sexual desires, tantrums and aggression. The “PWS Circle: Empowering Families, Energising Lives” aims to equip parents with practical skills and knowledge and help empower them to take charge of their lives and impact others positively. The support sessions will be facilitated by a trained clinical sociologist, psychologist and a social worker. The university will deliver this project in collaboration with the PWS Malaysia Association.
Pakistan: Aga Khan University Hospital, Karachi
Sabeen Iqbal, mother of a 32-year-old woman with PWS, and Salman Kirmani, Geneticist and Paediatric Endocrinologist, will work together to deliver a conference in their home country of Pakistan. This in-person event, originally planned for 2022, was postponed due to COVID-19. Sabeen and Salman plan to deliver a conference to help educate healthcare professionals about the needs of people with PWS. Unfortunately, most Pakistani children with PWS do not receive a timely diagnosis and even when they do, they are not offered treatment by a multi-disciplinary team. Even though the Pakistani medical system has healthcare professionals that are capable of providing this care, they have never been trained in the special needs of people with PWS, and the family-centric approach that aims to provide a high quality of life for these individuals. This conference will build upon the knowledge delivered in an earlier on-line event held in which drew upon resources from the IPWSO ECHO® library.
Romanian Prader-Willi Association (RPWA)
RPWA has received funding to support a hybrid conference on “PWS and Behaviour Management Strategies”. The conference will take place in Timisoara, Romania. The association hopes to attract over 100 health professionals, family members and people with PWS from across Europe and will focus on topics including quality of life, challenging behaviours, psychiatric problems, cognitive impairment, best practice models, early intervention, and the design of services to meet the behavioual and mental health needs of children and adults with PWS.
PWS Support Group of South Africa
Knowledge about PWS in South Africa is considered to be poor. The PWS Support Group of South Africa is in contact with around 84 families through Facebook, but in a population of 56 million, they estimate a prevalence of PWS of around 3,700, with less than 500 people with an actual diagnosis Knowledge amongst professionals is slowing improving. The PWS Support Group has received funding to hold an in-person workshop in Cape Town which aims to raise awareness of PWS amongst parents and health and allied professionals.
PWS Thailand currently has 145 active members. The association has received funding to support their Annual Meeting, which has grown year on year; this will be the first in-person meeting for more than 3 years and members are excited and looking forward to the reunion. The association will also use the funds to print PWS information brochures for professionals and parents, and to help fund the implementation a PWS Medical Alert Card.
IPWSO was established so that PWS associations, families, clinicians and caregivers around the world could exchange information and support and have a united global voice under one umbrella.
Information for Medical Professionals
The latest medical and scientific research and information, plus guides into common medical issues affecting people with PWS.